I told all of you that we were having an IEP (Individual Education Plan)meeting this week to discuss both of the twins' development in school. To see if either of them needed to have an IEP in the works or not.
The conclusion, and while I don't talk about Maddy's twin, Maelle, on here too often, was that Maelle definitely needs further testing with the speech coordinator here. She has full cognition, she's just extremely shy and reserved and has pronunciation difficulties. We hoped having her adenoids and tonsils removed last May (though there were more pressing issues of her not sleeping and waking up gasping for air that brought about this surgery; we hoped it might help in her speech too) but that was not the case. She is doing better every day and she does go to speech weekly but now that they are in school...it's the school's job to help us out on this.
That was no surprise to me. I am Maelle's translator and even on my best days, I don't know sometimes what she is saying.
So we moved on to Maddy.
And I know that both Justin and I were feeling pretty nervous about it. Maddy is a firecracker. She's cute. Adorable. But she is always pressing the limit of what she can or should get away with.
Maddy does not qualify for services. None.
The only concern they had regarding Maddy was that she doesn't sit still. Ever. During circle time, they have given her 4 squares that she can move around on but she must stay within her boundaries. And she does. She is paying full attention, she just cannot sit still long enough. And this is a good start, they gave her limitations and she stuck with them so it's only a matter of time and effort to keep changing those limitations until she can sit still...ABA at its finest.
But really, the main concern is that a 3 year old can't sit still? Academically, we think she is bored. She scribbles all over her papers but she knows what she was supposed to be doing...just filling time. Typical Maddy...the girl who flew through ABA so quickly that 10 trials bored her to death and we had to do 5 just to keep up with her brain. This isn't too concerning either. She's 3.
So we left there thinking...wow. In a few short months, she will be done with speech at the Rehab Center and then....
nothing.
Then she just goes to school like every other kid.
really?!
I know some of you must be thinking...why is this so shocking? The child got an ASD recovery diagnosis this summer. Shouldn't this be expected?
The answer is no.
We could hope that we would get here but there are/were no guarantees. And after over 1.5 years (which is a mere blip in the timeline of most families dealing with autism) of constant appointments and therapies and therapists and meetings and programs...to see the end in sight....
surreal.
We will still have assessments, I'm sure. OT in May and Dr. MAL in June and we'll see when we talk with Jen at Rehab what her thoughts are...but nothing full time. Nothing all encompassing.
....wow...
Tonight, Maddy was extra cuddly with me. She showered me with hugs and kisses and "i love you mommy's" almost like she knew what had happened today. And I hugged, kissed and "I love you"'d back, soaking in every millisecond of it.
Recovery from Autism is so possible.
Thursday, December 15, 2011
Wednesday, December 7, 2011
miraculous.
No news is good news, right?
The blog has been pretty quiet which is really reflective of how things have been in the MV world.
Pretty Quiet.
Maddy is doing extraordinary. (as usual) She is growing, changing, learning, developing. Just like every other kid.
She had an OT reassessment in...was it November? I can't remember, either way, it went wonderfully. She is still struggling with pencil placement but overall, she continued to grow and surpassed many of her peers in her OT skills. She graduated from 3 month evals to 6 month evals and we won't be returning to Stephanie until May! Maddy still doesn't enjoy any kind of prehandwriting skills or even coloring, but she is getting better at it. She has begun to choose to color on her own in her play time and that is great to see. She needs to have the interest before she can really do it with any kind of passion.
Speech is going well - she is getting better at understanding concepts and categories. She doesn't seem to really have a speaking speech problem but more understanding things in a less "literal" form. She is doing well with this though. She now understands when we say "wash off your face" that we're not literally going to wipe her face clean. Or today when I asked if her nose was running again and she said yes, she knew I meant a snotty nose and not that her nose left her face and was running away. Oh the phrases we say!
Next week we will have another school meeting to see if the Special Education provider thinks if either twin will qualify for services. It's been a long process getting the girls' records from the Rehab Center to the school. (I think this was the point of the girls' 2:7 and 2:9 meetings last year so we could avoid all this time gap...but obviously that didn't work. Sorry, guys, I know you read this....not downplaying your roles, which were very important, but somehow there still seems to be a time lapse between meeting criteria for an IEP from 2:9 to 3:6)...I don't know. I will find out more next week. It's frustrating, I'll be honest. And I'm not frustrated with anyone in particular. I'm totally not. I love everyone that we are currently dealing with or have dealt with. It's just such a blind process and all attempts to make it less confusing only seem to add to it. And how do we fix that? I don't know.
In October, I had the opportunity to travel to our Capitol and speak before the Human Resources Committee about the current Autism bill. I also had the privilege to meet with the CEO of the Anne Carlsen Center. That was a great experience. Speaking before lawmakers is a humbling experience. I can also say that I'm really encouraged with what Anne Carlsen is doing now and what their future hopes are. I can only hope that Maddy's story and Maddy's Voice can continue to make a difference in the Autism Community in our state and, if I'm not too prideful, our country.
And now Christmas is upon us. What does Maddy want for Christmas? A firetruck. And if you ask her if she wants anything else, she will tell you she wants a fireman, a fire, and water to put the fire out. oh Maddy girl.
She is truly an amazing child. And any Christmas wish I had, has been fulfilled. Just watching all my children sharing the joy and the love of this season. To see them excited. To have all of them decorating the tree. To hear Maddy singing "Jingle Bells" at the top of her lungs. To hear Eva tell her sisters to be good so Santa will give them presents. To have them all shout for joy when I finally found the missing Mary from our nativity scene. The exclamations of the pretty Christmas lights. To hold my husband's hand and feel the strength of our marriage. To know we survived an unthinkable and were blessed with a miracle.
Merry Christmas everyone. Merry Christmas.
The blog has been pretty quiet which is really reflective of how things have been in the MV world.
Pretty Quiet.
Maddy is doing extraordinary. (as usual) She is growing, changing, learning, developing. Just like every other kid.
She had an OT reassessment in...was it November? I can't remember, either way, it went wonderfully. She is still struggling with pencil placement but overall, she continued to grow and surpassed many of her peers in her OT skills. She graduated from 3 month evals to 6 month evals and we won't be returning to Stephanie until May! Maddy still doesn't enjoy any kind of prehandwriting skills or even coloring, but she is getting better at it. She has begun to choose to color on her own in her play time and that is great to see. She needs to have the interest before she can really do it with any kind of passion.
Speech is going well - she is getting better at understanding concepts and categories. She doesn't seem to really have a speaking speech problem but more understanding things in a less "literal" form. She is doing well with this though. She now understands when we say "wash off your face" that we're not literally going to wipe her face clean. Or today when I asked if her nose was running again and she said yes, she knew I meant a snotty nose and not that her nose left her face and was running away. Oh the phrases we say!
Next week we will have another school meeting to see if the Special Education provider thinks if either twin will qualify for services. It's been a long process getting the girls' records from the Rehab Center to the school. (I think this was the point of the girls' 2:7 and 2:9 meetings last year so we could avoid all this time gap...but obviously that didn't work. Sorry, guys, I know you read this....not downplaying your roles, which were very important, but somehow there still seems to be a time lapse between meeting criteria for an IEP from 2:9 to 3:6)...I don't know. I will find out more next week. It's frustrating, I'll be honest. And I'm not frustrated with anyone in particular. I'm totally not. I love everyone that we are currently dealing with or have dealt with. It's just such a blind process and all attempts to make it less confusing only seem to add to it. And how do we fix that? I don't know.
In October, I had the opportunity to travel to our Capitol and speak before the Human Resources Committee about the current Autism bill. I also had the privilege to meet with the CEO of the Anne Carlsen Center. That was a great experience. Speaking before lawmakers is a humbling experience. I can also say that I'm really encouraged with what Anne Carlsen is doing now and what their future hopes are. I can only hope that Maddy's story and Maddy's Voice can continue to make a difference in the Autism Community in our state and, if I'm not too prideful, our country.
And now Christmas is upon us. What does Maddy want for Christmas? A firetruck. And if you ask her if she wants anything else, she will tell you she wants a fireman, a fire, and water to put the fire out. oh Maddy girl.
She is truly an amazing child. And any Christmas wish I had, has been fulfilled. Just watching all my children sharing the joy and the love of this season. To see them excited. To have all of them decorating the tree. To hear Maddy singing "Jingle Bells" at the top of her lungs. To hear Eva tell her sisters to be good so Santa will give them presents. To have them all shout for joy when I finally found the missing Mary from our nativity scene. The exclamations of the pretty Christmas lights. To hold my husband's hand and feel the strength of our marriage. To know we survived an unthinkable and were blessed with a miracle.
Merry Christmas everyone. Merry Christmas.
Wednesday, October 12, 2011
search no more.
Yesterday I took the twins for a "fun day" as Eva was off to watch Barney Live with Justin. We did mostly shopping with a quick trip at the indoor playground. I'm not sure how much "fun" they would tell you it was, but surely it had to be better than the usual trip to see Jen and Heidi (their SLPs), Target, and back home in time to pick up E.
We were in Menards (yes, i realize that NOTHING about Menards sounds fun, and if you are wondering what Menards is - think walmart but with tools and home improvement....we needed dog food, thus the trip....) and they were over at the early Christmas display playing around. In that moment, it was like my watchful autism brain clicked off and I watched the two of them pretend to be in a castle with soldiers and reindeer and Christmas trees. They made up little games and danced to the music. They giggled and twirled and did what every other little 3 year old girl does at the thought of Christmas, snow, and dazzling lights. They were so normal. So free.
I decided in that moment that I could start to stop. Stop analyzing. Stop looking. Stop trying to control what I cannot possibly control. It's not up to me. I know this. I knew this. But it's a big step to decide that you aren't going to look for it anymore. You aren't going to make any potential arguments for a wrong remission diagnosis. There is nothing wrong.
There is nothing wrong.
She can be literal. So what.
She can hate loud sounds. So what.
She can still detest sandwiches. So what.
Those silly little things do not amount to anything other than quirks that make Maddy who she is. without autism.
I can live in agony of fear or I can live now. I can appreciate now. I can trust that if, God forbid, she regresses, that He will show me. He will tell me. He will guide me. Just like He did before. He is above Autism. I am not.
I'm in the process of cleaning out our spare room to make it into an office (yes, I am going to write a book...you all are going to buy it, right?!) and it's a mess. Okay, it's a catastrophe. Seriously. I thought for a moment to take a picture to prove it's awfulness but then quickly said no. I don't really NEED to prove that. Just trust me. Imagine a year of ABA materials piled into a room. Then remember Maddy's rate of growth and how much we FLEW through ABA...you get the visual picture. Data sheets. EVERYWHERE.
In this process, I found the yellow book.
The Yellow Book (no, not the phone book...haha...does anyone still use those? I digress...) was our communication source from ABA therapist to the next. We wrote (when we remembered) updates, how our sessions went, how Maddy is doing and so forth. So many memories came flooding back. I remember opening that book and staring so blankly at the first page trying, willing, myself to think of something super inspirational to write. I didn't find anything. So it was a boring "hey, this is what we are doing. you guys rock." type of entry to the beginning of our journey. Woo.
And of course, I'm going to keep it. Like so many things from the ABA journey. I don't know where I'm gonna store all of it but I can't let it go. And it reminded me of the inevitable.
Telling Maddy someday.
Eva is almost 5.5 and while she knows that April is Autism month, she hasn't asked yet why we care so much about Autism. I don't know if she knows that Maddy had autism. I think she might but at 5.5, there isn't too much detail needed for her brain. But there will be. And I don't know, really, how to explain it to her.
Oh I know, there are books on this very topic. Telling your other children about their sibling's autism. But this is not that generic. Maddy had autism. We did therapy. God is awesome and she's better now. That's not enough.
I'm not going to hide it. I will tell her. I will tell Maelle. I will tell Maddy. I mean, how could they not know. I just don't really know how. I am trusting that God will give me some awesome words and mothering ability. To explain what I don't know if I understand.
Seems silly to worry about that now. I just want to make it a good thing. An awesome, inspiring thing. Yes, she had autism...but she's so great now! Look at her! God can do some really amazing things! That whole "I can do all things through Christ who strengthens me" verse is real.
Either way, I know I should make some type of mental preparation as history shows (the yellow book) that given the last minute, I am not very creative. I think I probably would say "why do we talk about autism? Oh cuz Maddy had it but God rocks and now she doesn't" and hope that was enough. And while most kids would be fine with that...Maddy will want to know a heck of alot more. I know I would if it were me!
So let me mull that around for awhile, for now, I can say I'm done searching for what is not there. So, Autism, your grip is over. Farewell. I'm gonna let you go now too.
We were in Menards (yes, i realize that NOTHING about Menards sounds fun, and if you are wondering what Menards is - think walmart but with tools and home improvement....we needed dog food, thus the trip....) and they were over at the early Christmas display playing around. In that moment, it was like my watchful autism brain clicked off and I watched the two of them pretend to be in a castle with soldiers and reindeer and Christmas trees. They made up little games and danced to the music. They giggled and twirled and did what every other little 3 year old girl does at the thought of Christmas, snow, and dazzling lights. They were so normal. So free.
I decided in that moment that I could start to stop. Stop analyzing. Stop looking. Stop trying to control what I cannot possibly control. It's not up to me. I know this. I knew this. But it's a big step to decide that you aren't going to look for it anymore. You aren't going to make any potential arguments for a wrong remission diagnosis. There is nothing wrong.
There is nothing wrong.
She can be literal. So what.
She can hate loud sounds. So what.
She can still detest sandwiches. So what.
Those silly little things do not amount to anything other than quirks that make Maddy who she is. without autism.
I can live in agony of fear or I can live now. I can appreciate now. I can trust that if, God forbid, she regresses, that He will show me. He will tell me. He will guide me. Just like He did before. He is above Autism. I am not.
I'm in the process of cleaning out our spare room to make it into an office (yes, I am going to write a book...you all are going to buy it, right?!) and it's a mess. Okay, it's a catastrophe. Seriously. I thought for a moment to take a picture to prove it's awfulness but then quickly said no. I don't really NEED to prove that. Just trust me. Imagine a year of ABA materials piled into a room. Then remember Maddy's rate of growth and how much we FLEW through ABA...you get the visual picture. Data sheets. EVERYWHERE.
In this process, I found the yellow book.
The Yellow Book (no, not the phone book...haha...does anyone still use those? I digress...) was our communication source from ABA therapist to the next. We wrote (when we remembered) updates, how our sessions went, how Maddy is doing and so forth. So many memories came flooding back. I remember opening that book and staring so blankly at the first page trying, willing, myself to think of something super inspirational to write. I didn't find anything. So it was a boring "hey, this is what we are doing. you guys rock." type of entry to the beginning of our journey. Woo.
And of course, I'm going to keep it. Like so many things from the ABA journey. I don't know where I'm gonna store all of it but I can't let it go. And it reminded me of the inevitable.
Telling Maddy someday.
Eva is almost 5.5 and while she knows that April is Autism month, she hasn't asked yet why we care so much about Autism. I don't know if she knows that Maddy had autism. I think she might but at 5.5, there isn't too much detail needed for her brain. But there will be. And I don't know, really, how to explain it to her.
Oh I know, there are books on this very topic. Telling your other children about their sibling's autism. But this is not that generic. Maddy had autism. We did therapy. God is awesome and she's better now. That's not enough.
I'm not going to hide it. I will tell her. I will tell Maelle. I will tell Maddy. I mean, how could they not know. I just don't really know how. I am trusting that God will give me some awesome words and mothering ability. To explain what I don't know if I understand.
Seems silly to worry about that now. I just want to make it a good thing. An awesome, inspiring thing. Yes, she had autism...but she's so great now! Look at her! God can do some really amazing things! That whole "I can do all things through Christ who strengthens me" verse is real.
Either way, I know I should make some type of mental preparation as history shows (the yellow book) that given the last minute, I am not very creative. I think I probably would say "why do we talk about autism? Oh cuz Maddy had it but God rocks and now she doesn't" and hope that was enough. And while most kids would be fine with that...Maddy will want to know a heck of alot more. I know I would if it were me!
So let me mull that around for awhile, for now, I can say I'm done searching for what is not there. So, Autism, your grip is over. Farewell. I'm gonna let you go now too.
Thursday, September 22, 2011
from the other side
We are what, 2 months removed from the big REMISSION announcement?
And what have I gleaned from being on this side of the autism world?
This side is joyous and scary at the same time. For as much as you LOVE your life now, you fear it too. I know that I need to give myself some more time to get a more accurate idea of what remission, recovery, feels like. I know this.
I also know the fear of the possibility that your child is regressing but you are missing it. Or worse. You are in denial.
That's the detriment of autism. It's subjective to opinion. By anyone. By everyone.
The hard part of recognising autism in your child is pushing through denial to see truth. To stop explaining away their actions. To stop saying, "oh, she's a little delayed but not every kid gets EVERYTHING when they should." And when they are 18 months and not really caring about anything other than rocking or flapping or lining up toys or screeching at the top of their lungs for no apparent reason or whatever their stereopy is...well, then it's quite evident.
But as a parent or caregiver, you always think back to BEFORE that consumed their life. BEFORE that was all they did to find some kind of early warning sign that you ignored. And IF you are blessed enough to go through the entire Autism and ABA process and find that beautiful child once again, you again think back for some kind of warning sign. something. so you don't make that mistake of missing something so evident. again.
It's hard. I'm being honest.
And no I'm not...'oh poor me, my child has been blessed with recovery and I still want to find something to cry about or get sympathy over.' I'm not. I'm honestly telling you that I think it will be YEARS before I will be able to relax about Maddy's development. If ever. The curse of a mother and the curse of a mother who has seen autism in her child.
Yes, I can see how wonderful she is. I can see the amazingness of having her back. I also see the delay. The literalness of her brain. I quiz her things and then quiz Maelle and when their responses are similar...then I breathe a breath of relief. And I am FOREVER grateful that I have Maelle to bounce is this normal? behavioral questions off of. (and yes I am grateful for Mae-Mae for more than that. She is SUCH a wonderful child. VERY loving and honestly, the best thing for Maddy. She mothers her and always makes sure she is taken care of. She has the sweetest heart and will make such a wonderful mother someday. Because that's what she loves to do. Mother. and LOVE.)
Maddy is still very literal. She does not comprehend things like "what do your hands feel?" I can see her brain thinking...my hands don't FEEL anything. They are not happy or sad or scared or mad or surprised. They are hands. They touch....so I find myself having to stop and rephrase things often. And I find that when Maddy is the MOST defiant about something...it's because she doesn't understand what the heck I am talking about. Even tonight I was telling her that when I talk, she needs to listen and she just stood there looking at me with a blank face. She didn't know what "listen" meant. Okay...you need to hear me. And then I explained that "listen" meant the same thing as "hear" - you hear with your ears. You listen with your ears. She smiled, understanding and off she went in her happy self. And I sat back and went...crap. What else am I saying that she has no idea about? And I seriously need to find a way to teach her that when she doesn't understand me to ask me what in the world I am talking about....on a three year old level.
She is doing well in school and seems to have friends there. Her school work is improving and I think she loves it. She really does seem to do well in the social aspect of school.
Overall, she has her quirks but is still learning and growing on her own without the use of ABA and that was the goal.
I know there are millions of parents out there that would give anything to be in our shoes. To only have to worry about constantly over analyzing their child's behavior instead of having to deal with daily ABA schedules for years and years on end. With only seeing minimal improvements and ultimately NOT getting their child back. I know this too.
I would be lying if it was all roses after the RECOVERED diagnosis. It's not. It's still completely awesome and I would NEVER want to lose it...and that is why it's so hard. Because we all had those smiley babies once and Autism took them once, to get them back and lose them again would be unthinkable and terrifying.
I refuse to live in constant fear. For now, just slight paranoia. I know it will subside. I have hope in that. God has assured me of that.
I have learned I have to let myself feel these things. I have to feel them. I have to go through them. I have to process and move on. And I share that with all of you because it's the reality. the honesty. another part of our journey through autism.
And what have I gleaned from being on this side of the autism world?
This side is joyous and scary at the same time. For as much as you LOVE your life now, you fear it too. I know that I need to give myself some more time to get a more accurate idea of what remission, recovery, feels like. I know this.
I also know the fear of the possibility that your child is regressing but you are missing it. Or worse. You are in denial.
That's the detriment of autism. It's subjective to opinion. By anyone. By everyone.
The hard part of recognising autism in your child is pushing through denial to see truth. To stop explaining away their actions. To stop saying, "oh, she's a little delayed but not every kid gets EVERYTHING when they should." And when they are 18 months and not really caring about anything other than rocking or flapping or lining up toys or screeching at the top of their lungs for no apparent reason or whatever their stereopy is...well, then it's quite evident.
But as a parent or caregiver, you always think back to BEFORE that consumed their life. BEFORE that was all they did to find some kind of early warning sign that you ignored. And IF you are blessed enough to go through the entire Autism and ABA process and find that beautiful child once again, you again think back for some kind of warning sign. something. so you don't make that mistake of missing something so evident. again.
It's hard. I'm being honest.
And no I'm not...'oh poor me, my child has been blessed with recovery and I still want to find something to cry about or get sympathy over.' I'm not. I'm honestly telling you that I think it will be YEARS before I will be able to relax about Maddy's development. If ever. The curse of a mother and the curse of a mother who has seen autism in her child.
Yes, I can see how wonderful she is. I can see the amazingness of having her back. I also see the delay. The literalness of her brain. I quiz her things and then quiz Maelle and when their responses are similar...then I breathe a breath of relief. And I am FOREVER grateful that I have Maelle to bounce is this normal? behavioral questions off of. (and yes I am grateful for Mae-Mae for more than that. She is SUCH a wonderful child. VERY loving and honestly, the best thing for Maddy. She mothers her and always makes sure she is taken care of. She has the sweetest heart and will make such a wonderful mother someday. Because that's what she loves to do. Mother. and LOVE.)
Maddy is still very literal. She does not comprehend things like "what do your hands feel?" I can see her brain thinking...my hands don't FEEL anything. They are not happy or sad or scared or mad or surprised. They are hands. They touch....so I find myself having to stop and rephrase things often. And I find that when Maddy is the MOST defiant about something...it's because she doesn't understand what the heck I am talking about. Even tonight I was telling her that when I talk, she needs to listen and she just stood there looking at me with a blank face. She didn't know what "listen" meant. Okay...you need to hear me. And then I explained that "listen" meant the same thing as "hear" - you hear with your ears. You listen with your ears. She smiled, understanding and off she went in her happy self. And I sat back and went...crap. What else am I saying that she has no idea about? And I seriously need to find a way to teach her that when she doesn't understand me to ask me what in the world I am talking about....on a three year old level.
She is doing well in school and seems to have friends there. Her school work is improving and I think she loves it. She really does seem to do well in the social aspect of school.
Overall, she has her quirks but is still learning and growing on her own without the use of ABA and that was the goal.
I know there are millions of parents out there that would give anything to be in our shoes. To only have to worry about constantly over analyzing their child's behavior instead of having to deal with daily ABA schedules for years and years on end. With only seeing minimal improvements and ultimately NOT getting their child back. I know this too.
I would be lying if it was all roses after the RECOVERED diagnosis. It's not. It's still completely awesome and I would NEVER want to lose it...and that is why it's so hard. Because we all had those smiley babies once and Autism took them once, to get them back and lose them again would be unthinkable and terrifying.
I refuse to live in constant fear. For now, just slight paranoia. I know it will subside. I have hope in that. God has assured me of that.
I have learned I have to let myself feel these things. I have to feel them. I have to go through them. I have to process and move on. And I share that with all of you because it's the reality. the honesty. another part of our journey through autism.
Thursday, July 21, 2011
one year. one jigsaw.
One year ago, I was in despair. Absolute. Horrible. Despair.
What I remember of last July was the feeling of loss. It felt like my heart had been ripped out of my chest and I had no clue where to find it or how to piece it together again. I felt like an absolute failure. Truly. Because you want to be able to fix any problem that your kids have. Anything. From small to huge. You are the parent. Your job is to fix, right? Well...sure there are lots of problems that you simply cannot fix. Those are the problems that pull at your heart strings. And this gutted me.
Autism.
If you have never read this, I encourage you to read how I felt one year ago on my personal blog. The entry title is called Empty Jigsaw.
I have a hard time reading that...I feel too much of it yet.
On the 8th of this month...we received the official letter from Dr. MAL that Maddy was in remission. Her observed and tested scores proved that she was Non-Autistic (yes, I know...i hate that word too...autistic....). But it wasn't just those words that freed us. It wasn't just that we got to see the words REMISSION in all caps. It was the fact that a year ago, this child was suffering from moderate autism. Her overall age level was well below average at the 7th percentile.
7th. This isn't like height/weight...this is her cognitional living. 7th percent of her peers. It still makes me want to throw up.
Today she is at 63rd. She is average...slightly above average. 63! In one year.
Dr. MAL writes "The profile observed today is consistent with that of a typical functioning 3 year old."
Typical.
When you are a teen...you hope to be anything BUT typical...and someday I hope she does strive to be as non-typical as she wants in those years...but for now...TYPICAL is an awesome word.
I wrote last year that "they say there is no cure for autism. I say you don't know my God." Those were some heavy words. I will admit it. I probably erased that phrase a million times before I published the post. I hesitated. Who am I to be so bold? Who am I to declare that? Then I thought, who am I then if I don't believe that? Surely not a Christian. If I didn't believe that God was capable of removing Autism from my child then does that make Autism greater than God?
And let me say this...I believe that God moved mountains in our life. I believe He did amazing things. The FULL credit goes to Him.
I think sometimes people get confused by this though...that if they just pray and do nothing then somehow it was God's fault for not moving. I think we still have to work for it. He is in control but we have to be willing to do whatever. whenever. however. Trusting in Him. Proverbs 3: 5-6 says this "Trust in the Lord with all your heart and lean not on your own understanding, in all your ways, submit to Him and He will make your paths straight."
I know I'm getting preachy...hang with me. Where is the evidence of this...here we go. So first off, we just happened to move to a place where I would just happen to meet the most amazing group of friends and when Maddy was diagnosed, we just happen to be under the supervision of a doc who just happened to have studied under Dr. Mulich in Ohio who just happened to know alot about ABA, and when we just happened to pick Ann Carlsen Foundation, they just happened to send us to a conference with CARD who just happened to be founded by Dr. G. who just happened to be involved in the original Lovaas study with ABA and Autism....and CARD just happened to be working on the SKILLS database and they just happened to have a spot on their bata program for us and we just happened to be able to find a group of people willing to do ABA who almost all of them just happened to move here right around the same time as we did. And Maddy just happened to respond really well with ABA taught by a bunch of complete amateurs (don't worry guys, I'm board certified, right?! ;) ha) who 2 years ago had never thought about the steps to chain ABA programs. All of that just happened. Purely a coincidence. Right? I think not. I think that is God. Moving.
Dr. MAL writes "the support and advocacy that Maddy has within her family and community is outstanding, and her progress is directly related to their time and dedication. Her results are not typical of the expectations for ABA in general."
So thank you. all of you. My team. My prayer warriors. My community. My family. My God. Everyone. thank you.
When I wrote "empty jigsaw" - I could have never imagined writing this entry one year later. Never. And that is testament to how amazing our God is and how wonderful Maddy is. She is a miracle. She is a blessing. She's still three. She still has her quirks...today she tried to convince me she couldn't remember her alphabet (she can...she was just being 3).
Tonight after reading books, I set the books on the floor and stood up to put the girls to bed and Maddy says "No, wait, gotta clean up the books first, Mommy."
Really, kid?
Go for it.
This morning when she woke up, about an hour after her sisters, she walked into the living room and said "good morning, girls."
At supper with pizza all over her face she says, "look at me girls, I'm all messy!" And I love that she calls her sisters "girls" and "sisters" as well as their actual names.
Yesterday I asked her how she was and she said "I'm four." LOL. We're still working on that one!
I will not forget July 15, 2010. I will never forget the agony.
I will never forget the first time Maddy held my hand after an ABA session.
I will never forget the first time she looked into my eyes and said "i love you, Mommy"
I will never forget July 8, 2011. I will never forget the joy.
What I remember of last July was the feeling of loss. It felt like my heart had been ripped out of my chest and I had no clue where to find it or how to piece it together again. I felt like an absolute failure. Truly. Because you want to be able to fix any problem that your kids have. Anything. From small to huge. You are the parent. Your job is to fix, right? Well...sure there are lots of problems that you simply cannot fix. Those are the problems that pull at your heart strings. And this gutted me.
Autism.
If you have never read this, I encourage you to read how I felt one year ago on my personal blog. The entry title is called Empty Jigsaw.
I have a hard time reading that...I feel too much of it yet.
On the 8th of this month...we received the official letter from Dr. MAL that Maddy was in remission. Her observed and tested scores proved that she was Non-Autistic (yes, I know...i hate that word too...autistic....). But it wasn't just those words that freed us. It wasn't just that we got to see the words REMISSION in all caps. It was the fact that a year ago, this child was suffering from moderate autism. Her overall age level was well below average at the 7th percentile.
7th. This isn't like height/weight...this is her cognitional living. 7th percent of her peers. It still makes me want to throw up.
Today she is at 63rd. She is average...slightly above average. 63! In one year.
Dr. MAL writes "The profile observed today is consistent with that of a typical functioning 3 year old."
Typical.
When you are a teen...you hope to be anything BUT typical...and someday I hope she does strive to be as non-typical as she wants in those years...but for now...TYPICAL is an awesome word.
I wrote last year that "they say there is no cure for autism. I say you don't know my God." Those were some heavy words. I will admit it. I probably erased that phrase a million times before I published the post. I hesitated. Who am I to be so bold? Who am I to declare that? Then I thought, who am I then if I don't believe that? Surely not a Christian. If I didn't believe that God was capable of removing Autism from my child then does that make Autism greater than God?
And let me say this...I believe that God moved mountains in our life. I believe He did amazing things. The FULL credit goes to Him.
I think sometimes people get confused by this though...that if they just pray and do nothing then somehow it was God's fault for not moving. I think we still have to work for it. He is in control but we have to be willing to do whatever. whenever. however. Trusting in Him. Proverbs 3: 5-6 says this "Trust in the Lord with all your heart and lean not on your own understanding, in all your ways, submit to Him and He will make your paths straight."
I know I'm getting preachy...hang with me. Where is the evidence of this...here we go. So first off, we just happened to move to a place where I would just happen to meet the most amazing group of friends and when Maddy was diagnosed, we just happen to be under the supervision of a doc who just happened to have studied under Dr. Mulich in Ohio who just happened to know alot about ABA, and when we just happened to pick Ann Carlsen Foundation, they just happened to send us to a conference with CARD who just happened to be founded by Dr. G. who just happened to be involved in the original Lovaas study with ABA and Autism....and CARD just happened to be working on the SKILLS database and they just happened to have a spot on their bata program for us and we just happened to be able to find a group of people willing to do ABA who almost all of them just happened to move here right around the same time as we did. And Maddy just happened to respond really well with ABA taught by a bunch of complete amateurs (don't worry guys, I'm board certified, right?! ;) ha) who 2 years ago had never thought about the steps to chain ABA programs. All of that just happened. Purely a coincidence. Right? I think not. I think that is God. Moving.
Dr. MAL writes "the support and advocacy that Maddy has within her family and community is outstanding, and her progress is directly related to their time and dedication. Her results are not typical of the expectations for ABA in general."
So thank you. all of you. My team. My prayer warriors. My community. My family. My God. Everyone. thank you.
When I wrote "empty jigsaw" - I could have never imagined writing this entry one year later. Never. And that is testament to how amazing our God is and how wonderful Maddy is. She is a miracle. She is a blessing. She's still three. She still has her quirks...today she tried to convince me she couldn't remember her alphabet (she can...she was just being 3).
Tonight after reading books, I set the books on the floor and stood up to put the girls to bed and Maddy says "No, wait, gotta clean up the books first, Mommy."
Really, kid?
Go for it.
This morning when she woke up, about an hour after her sisters, she walked into the living room and said "good morning, girls."
At supper with pizza all over her face she says, "look at me girls, I'm all messy!" And I love that she calls her sisters "girls" and "sisters" as well as their actual names.
Yesterday I asked her how she was and she said "I'm four." LOL. We're still working on that one!
I will not forget July 15, 2010. I will never forget the agony.
I will never forget the first time Maddy held my hand after an ABA session.
I will never forget the first time she looked into my eyes and said "i love you, Mommy"
I will never forget July 8, 2011. I will never forget the joy.
Wednesday, July 20, 2011
Maddy 3.0
I know...ack...I have SO MUCH TO SAY! The details of her ASD Remission...but first I had to write a post about her turning 3 last month...you can find that entry on my own personal blog ~Kitty Korner ~ Maddy 3.0
I will be back soon to post the details of remission. promise.
I will be back soon to post the details of remission. promise.
Friday, July 8, 2011
officially.
Maddy is considered to be in Autistic Spectrum Disorder REMISSION.
yes.
and I have so much to say.
But first I must celebrate.
Be back soon to tell you all the wonderful details....and they are wonderful.
yes.
and I have so much to say.
But first I must celebrate.
Be back soon to tell you all the wonderful details....and they are wonderful.
Thursday, June 23, 2011
how life is different now.
"Come on, friends! Let's pray!" Maddy exclaimed last night during supper. Ever the vigilante about mealtime prayer, Maddy makes sure we always thank God before, during, and after we eat.
Which is fitting. We should be ever thankful. For so many reasons.
Every night at supper, we sit around the table and talk about our favorite events of the day. We knew things were changing in February when Maddy started asking "what your day of the day?" - her version of what's your favorite time of the day today? and now she can answer for herself, whatever small thing it is, from going outside to play to eating Dora fruit snacks or playing at the church. And last night when she shouted that out during favorite time, I burst out laughing and Justin affirmed that that very moment was his favorite time of the day.
We are in the full swing of summer now. The summer schedule....which is...really...nothing. Both of the twins still have speech on Fridays and Maddy is doing a peer group speech session that involves 1 hour of peer time with her same speech teacher, Jen, and two other boys who have very limited speech. It is amazing to see our little chatterbox in a room with boys teaching them how to speak more. Sure, she has her own social speech issues to learn...she still answers the question: How are you? with I'm Maddy! but I cut her some slack since Maelle only just learned to answer that question with good, or fine, or great. If everything remains on schedule, she will learn that herself in about a month from now and I am thankful that she will learn it and the gap is no further than it always has been. Maelle is definitely more lingual and precise where Maddy is more physical and care-free. Maelle is shy and Maddy is overly outgoing. Ah, twins.
And that is how life is different now. I really do have twins again.
Yesterday I was working downstairs trying to organize my basement and I began reflecting on the contrast from last year to this year. First of all, let me just say that organizing my basement is an understatement. I tell everyone that now that we are done with ABA...my goal is to recover my house. Housework took a beyond the backseat position in my priorities last year and I'm seeing the results now. Thankfully, it's just stuff and it really doesn't matter when it gets cleaned or organized....just as long as it does.
So reflecting last year, I have come to the conclusion that I didn't have twins last year, I had a 4 year old, a 2 year old, and 1 year old who was becoming increasingly younger stuck in a 2 year old body. That doesn't sound very pretty or nice. It sounds kind of mean and it's not meant to sound mean, at all, just the reality of having a child regressing so quickly into autism.
Now...the twins play together. Now I have the challenge of having 2 three year olds. And that is a challenge. Most people will tell you that the "terrible twos" is a sham and really three is the major challenge and I will concur. 3 is awful and great at the same time. They are old enough that they can do some things, they don't need minute by minute supervision....but they probably should have it for the things they come up with. 2 minutes of silence is 2 minutes too long. Lesson learned yesterday when they were both downstairs and quiet. I discover them eating a bag of lollypop suckers. AN ENTIRE BAG. They are covered in the sweet sticky goodness with grins on their faces and hair matted to their faces. Partners in crime. I have learned to laugh about these things and i threw them both in the bathtub...where they played for a good 30 minutes talking their Ariel dolls and swimming and laughing.
Now...I can explain things to her and know that if she doesn't get it, I can find ways in my own brain to explain it to her. I am capable of mothering my kids regardless of how incompetent I feel. That's the truth. That's the sneaky thing about motherhood...no one really warns you how dumb you will feel when you are in charge and you have no idea what you are doing. Marching through autism has taught me that. It has thickened my skin - so to say - and allowed me to take charge of my life, my kids, and my happiness. And ABA has taught me a new way of explaining things to all my kids, not just Maddy. I think I use my ABA brain more on Maelle and Eva than Maddy these days.
Now...the girls can spend the day with their great grandma and aunt and I have minimal worry. I don't have to be the mother hawk all day hovering over everything they do but I can let them spread their wings with others and know that it's ok. And for those watching them, I know how difficult the task of 3 kids is...but how much easier it is now than it was then. Then, it was not possible to leave them with anyone. Not for the sake that no one was capable, because people were....but it was beyond overwhelming to care for Maddy - let alone the other two.
Now...I've learned to worry less and love more. Maddy has her quirks and I hope someday we can lessen them but I'm not overly concerned about her future anymore than I am of my other girls. Sure....we all worry about our kids but I know she has a bright future just like Eva does and just like Maelle
Now...not one person could look at Maddy and say to me "she seems Autistic to me" (a phrase I will NEVER say about any child. The child has autism...but they are not autistic. It does NOT define them....you have cancer you are not canceric, are you?) - she looks and acts like every other three year old on the playground.
and Now, I must go because Maddy just walked up to me and asked for a Handy Manny band-aid for her boo-boo so it will make it all better. then - maddy might have known she had a boo-boo but surely wouldn't have done anything about it. She would have never thought to find me, to seek help, to ask for help, that band-aids are to make boo-boo's better or that they even exist, and that Handy Manny has band aids and that we own some of those said band-aids.
oh how life is different now. and how forever thankful I am to God for that. So come on friends, let's pray and give thanks for such a wonderful blessing.
Which is fitting. We should be ever thankful. For so many reasons.
Every night at supper, we sit around the table and talk about our favorite events of the day. We knew things were changing in February when Maddy started asking "what your day of the day?" - her version of what's your favorite time of the day today? and now she can answer for herself, whatever small thing it is, from going outside to play to eating Dora fruit snacks or playing at the church. And last night when she shouted that out during favorite time, I burst out laughing and Justin affirmed that that very moment was his favorite time of the day.
We are in the full swing of summer now. The summer schedule....which is...really...nothing. Both of the twins still have speech on Fridays and Maddy is doing a peer group speech session that involves 1 hour of peer time with her same speech teacher, Jen, and two other boys who have very limited speech. It is amazing to see our little chatterbox in a room with boys teaching them how to speak more. Sure, she has her own social speech issues to learn...she still answers the question: How are you? with I'm Maddy! but I cut her some slack since Maelle only just learned to answer that question with good, or fine, or great. If everything remains on schedule, she will learn that herself in about a month from now and I am thankful that she will learn it and the gap is no further than it always has been. Maelle is definitely more lingual and precise where Maddy is more physical and care-free. Maelle is shy and Maddy is overly outgoing. Ah, twins.
And that is how life is different now. I really do have twins again.
Yesterday I was working downstairs trying to organize my basement and I began reflecting on the contrast from last year to this year. First of all, let me just say that organizing my basement is an understatement. I tell everyone that now that we are done with ABA...my goal is to recover my house. Housework took a beyond the backseat position in my priorities last year and I'm seeing the results now. Thankfully, it's just stuff and it really doesn't matter when it gets cleaned or organized....just as long as it does.
So reflecting last year, I have come to the conclusion that I didn't have twins last year, I had a 4 year old, a 2 year old, and 1 year old who was becoming increasingly younger stuck in a 2 year old body. That doesn't sound very pretty or nice. It sounds kind of mean and it's not meant to sound mean, at all, just the reality of having a child regressing so quickly into autism.
Now...the twins play together. Now I have the challenge of having 2 three year olds. And that is a challenge. Most people will tell you that the "terrible twos" is a sham and really three is the major challenge and I will concur. 3 is awful and great at the same time. They are old enough that they can do some things, they don't need minute by minute supervision....but they probably should have it for the things they come up with. 2 minutes of silence is 2 minutes too long. Lesson learned yesterday when they were both downstairs and quiet. I discover them eating a bag of lollypop suckers. AN ENTIRE BAG. They are covered in the sweet sticky goodness with grins on their faces and hair matted to their faces. Partners in crime. I have learned to laugh about these things and i threw them both in the bathtub...where they played for a good 30 minutes talking their Ariel dolls and swimming and laughing.
Now...I can explain things to her and know that if she doesn't get it, I can find ways in my own brain to explain it to her. I am capable of mothering my kids regardless of how incompetent I feel. That's the truth. That's the sneaky thing about motherhood...no one really warns you how dumb you will feel when you are in charge and you have no idea what you are doing. Marching through autism has taught me that. It has thickened my skin - so to say - and allowed me to take charge of my life, my kids, and my happiness. And ABA has taught me a new way of explaining things to all my kids, not just Maddy. I think I use my ABA brain more on Maelle and Eva than Maddy these days.
Now...the girls can spend the day with their great grandma and aunt and I have minimal worry. I don't have to be the mother hawk all day hovering over everything they do but I can let them spread their wings with others and know that it's ok. And for those watching them, I know how difficult the task of 3 kids is...but how much easier it is now than it was then. Then, it was not possible to leave them with anyone. Not for the sake that no one was capable, because people were....but it was beyond overwhelming to care for Maddy - let alone the other two.
Now...I've learned to worry less and love more. Maddy has her quirks and I hope someday we can lessen them but I'm not overly concerned about her future anymore than I am of my other girls. Sure....we all worry about our kids but I know she has a bright future just like Eva does and just like Maelle
Now...not one person could look at Maddy and say to me "she seems Autistic to me" (a phrase I will NEVER say about any child. The child has autism...but they are not autistic. It does NOT define them....you have cancer you are not canceric, are you?) - she looks and acts like every other three year old on the playground.
and Now, I must go because Maddy just walked up to me and asked for a Handy Manny band-aid for her boo-boo so it will make it all better. then - maddy might have known she had a boo-boo but surely wouldn't have done anything about it. She would have never thought to find me, to seek help, to ask for help, that band-aids are to make boo-boo's better or that they even exist, and that Handy Manny has band aids and that we own some of those said band-aids.
oh how life is different now. and how forever thankful I am to God for that. So come on friends, let's pray and give thanks for such a wonderful blessing.
Monday, May 9, 2011
unsolicated.
I do have alot to say. I have much to report on as far as our Puzzle Event, our "good-bye to ABA" party and things.
I will get to those items. I'm just having a hard time finding the time to blog lately. As soon as one part of our journey slows, another part speeds up. I am not complaining. It's just been a bit eye opening as I thought as soon as ABA ended that things would ease up a bit and the truth is that while from Maddy's perspective, they have, but not for me. Granted, I do NOT spend my evenings staring at data sheets anymore nor to I spend my Monday nights holed up in my pseudo office trying to piece together material for our Monday night meetings.
Either way, we're all adjusting to life without ABA and soon enough, we'll be adjusting to summer and the break from preschool. The end of our state provided Early Intervention Services as the girls turn 3. Summer Speech Camp for Maddy and life in general with a 5 year old and 3 year old twins.
I will admit that things are easier. It's almost scary to say that. But it's true. Gone are the days when I couldn't go to the store alone with all my kids. I don't even remember the last time I have had to use the double stroller that I so heavily depended on not long ago. As we prepare for our trip to Indiana, I don't even know if we'll bring it. Both are so independent now that the stroller would be more of a nuisance now than anything.
So, with this new found freedom, I found myself with the twins at the store on Friday after speech therapy. I was gathering materials for our "Goodbye to ABA" party and the girls were being very good. Remarkably good. We definitely have awesome days and not so awesome days but this is normal. It is normal to have days when your nearly 3 year old twins don't want to comply to a single word that is coming out of your mouth. It is normal to have days when they are complete angel children.
Either way, it was a great day. As we pushed the cart into the check out lane, I got the inevitable, "Are they twins?" from the cashier. A mid-50s looking woman with a smile on her face.
I smiled taking a secret tally in my brain on how many zillion times I have been asked this question. "yes, they are."
"Oh one must look like dad and the other like mom."
"yes," I respond again.
"How old are they?" At this point, this is seemingly normal conversation for me and any random stranger.
"3 weeks from 3."
"My grandsons are 3. They're twins too." She shared with me, then out of the blue asks, "are they potty trained?"
Weird, but ok. "One of them is and the other is working on it." Ironic since not only was I buying party supplies but I was also buying Maelle's Good Job Potty Training presents (that consisted of baby toys...as in a baby crib, baby swing, baby highchair...because she loves to play with her babies) for finally being fully potty trained.
She frowned at me. "Oh really?"
I kinda chuckled and said, "yes, and that's fine with me. I'd rather do one at a time then dealing with both of them at the same time."
"We didn't want to do that. We wanted to be done with it at once. My grandsons are potty trained," she clearly bragged at me.
"Good for them," I said honestly. Knowing what a relief it is to have potty trained children and how relieving it will be when all of mine are.
"You should really get her potty trained. Really. Before she is 3." She said in a pushy tone.
I shrug, getting agitated. "We're working on it."
I'm fairly certain that the girls must have distracted the conversation at that point. I don't remember much more than that.
Part of me really wanted to stop that woman and try my best to explain to her what Maddy has accomplished in the past months that most children will not be able to boast about. She has nearly conquered Autism in those months.
Part of me rejoices that the next hurdle we have to cross is potty training. Something as normal as potty training. I no longer have to worry about trying to get her brain to make the connection that I'm in the room or that I'm her mother or that I'm talking to her or that I want her to want to be near me. I no longer have to worry that she doesn't care about the world around her. She no longer has the blank face but a face full of hope and love and joy and spitfire. The face of a child. Not the face of hollow fear.
I am slowly being able to accept her new behavior that is normal for a nearly three year old. Granted, she has her quirks, I am not denying that. She still does rock at night instead of sleep...we're working on it. She does repeat phrases like "hi, I'm Maddy" to me, as if I, the woman who named her, wouldn't already know that. But again, we're working on it. Socially, she is doing really well. That is the main concern. Can she socially interact and yes, she can. Does she still have moments where you can see in her eyes that she is getting near her limit of stimulation...yes? But those are few and far between. She is still 2. Even at 3, this is socially acceptable behavior. She is behaving in a way that her twin does and all it really takes is to ask ourselves, "would Maelle do this?" If the answer is yes...we can rest easy. If not, we access and deal with it.
I know that woman had no idea. She just saw happy nearly three year old twins. She saw a potty trained child and one that wears Pull-Ups. She did not see neuro-typical twin and twin with autism. Yes, we can be happy about that.
Don't get me wrong, there's still a part of me that kinda wanted to emotionally slap that woman for the judgement she threw at me. I'm pretty sure that is normal too. heh.
I will get to those items. I'm just having a hard time finding the time to blog lately. As soon as one part of our journey slows, another part speeds up. I am not complaining. It's just been a bit eye opening as I thought as soon as ABA ended that things would ease up a bit and the truth is that while from Maddy's perspective, they have, but not for me. Granted, I do NOT spend my evenings staring at data sheets anymore nor to I spend my Monday nights holed up in my pseudo office trying to piece together material for our Monday night meetings.
Either way, we're all adjusting to life without ABA and soon enough, we'll be adjusting to summer and the break from preschool. The end of our state provided Early Intervention Services as the girls turn 3. Summer Speech Camp for Maddy and life in general with a 5 year old and 3 year old twins.
I will admit that things are easier. It's almost scary to say that. But it's true. Gone are the days when I couldn't go to the store alone with all my kids. I don't even remember the last time I have had to use the double stroller that I so heavily depended on not long ago. As we prepare for our trip to Indiana, I don't even know if we'll bring it. Both are so independent now that the stroller would be more of a nuisance now than anything.
So, with this new found freedom, I found myself with the twins at the store on Friday after speech therapy. I was gathering materials for our "Goodbye to ABA" party and the girls were being very good. Remarkably good. We definitely have awesome days and not so awesome days but this is normal. It is normal to have days when your nearly 3 year old twins don't want to comply to a single word that is coming out of your mouth. It is normal to have days when they are complete angel children.
Either way, it was a great day. As we pushed the cart into the check out lane, I got the inevitable, "Are they twins?" from the cashier. A mid-50s looking woman with a smile on her face.
I smiled taking a secret tally in my brain on how many zillion times I have been asked this question. "yes, they are."
"Oh one must look like dad and the other like mom."
"yes," I respond again.
"How old are they?" At this point, this is seemingly normal conversation for me and any random stranger.
"3 weeks from 3."
"My grandsons are 3. They're twins too." She shared with me, then out of the blue asks, "are they potty trained?"
Weird, but ok. "One of them is and the other is working on it." Ironic since not only was I buying party supplies but I was also buying Maelle's Good Job Potty Training presents (that consisted of baby toys...as in a baby crib, baby swing, baby highchair...because she loves to play with her babies) for finally being fully potty trained.
She frowned at me. "Oh really?"
I kinda chuckled and said, "yes, and that's fine with me. I'd rather do one at a time then dealing with both of them at the same time."
"We didn't want to do that. We wanted to be done with it at once. My grandsons are potty trained," she clearly bragged at me.
"Good for them," I said honestly. Knowing what a relief it is to have potty trained children and how relieving it will be when all of mine are.
"You should really get her potty trained. Really. Before she is 3." She said in a pushy tone.
I shrug, getting agitated. "We're working on it."
I'm fairly certain that the girls must have distracted the conversation at that point. I don't remember much more than that.
Part of me really wanted to stop that woman and try my best to explain to her what Maddy has accomplished in the past months that most children will not be able to boast about. She has nearly conquered Autism in those months.
Part of me rejoices that the next hurdle we have to cross is potty training. Something as normal as potty training. I no longer have to worry about trying to get her brain to make the connection that I'm in the room or that I'm her mother or that I'm talking to her or that I want her to want to be near me. I no longer have to worry that she doesn't care about the world around her. She no longer has the blank face but a face full of hope and love and joy and spitfire. The face of a child. Not the face of hollow fear.
I am slowly being able to accept her new behavior that is normal for a nearly three year old. Granted, she has her quirks, I am not denying that. She still does rock at night instead of sleep...we're working on it. She does repeat phrases like "hi, I'm Maddy" to me, as if I, the woman who named her, wouldn't already know that. But again, we're working on it. Socially, she is doing really well. That is the main concern. Can she socially interact and yes, she can. Does she still have moments where you can see in her eyes that she is getting near her limit of stimulation...yes? But those are few and far between. She is still 2. Even at 3, this is socially acceptable behavior. She is behaving in a way that her twin does and all it really takes is to ask ourselves, "would Maelle do this?" If the answer is yes...we can rest easy. If not, we access and deal with it.
I know that woman had no idea. She just saw happy nearly three year old twins. She saw a potty trained child and one that wears Pull-Ups. She did not see neuro-typical twin and twin with autism. Yes, we can be happy about that.
Don't get me wrong, there's still a part of me that kinda wanted to emotionally slap that woman for the judgement she threw at me. I'm pretty sure that is normal too. heh.
Sunday, April 17, 2011
Friday, April 8, 2011
so quickly.
I don't know anyone else in our position.
I know people whose children have autism. I do not know any people, personally, whose child has autism and has recovered. I don't know anyone whose child has reached near recovery in such a short amount of time.
And here is the truth of it.
It's terrifying.
It's great, wonderful, bliss, the best feeling in the world. Yes, it is those things.
But it is very scary.
Because I keep searching. Analyzing. Watching. Worrying. Waiting for the other shoe to drop.
When you take a child who was fine until 20 months, then suddenly regresses to a child in such a unrelative state, then quickly emerges into the vibrant, smiley, happy, sociable child that you hoped she would be; it's alot to take in.
And you have to remember that this child is two years old. TWO. And most two year olds are volatile little things. Prone to temper tantrums. Everything is an emotional battle from getting into a carseat to putting a shirt on. They are stubborn, misunderstood, and wild. They can be the sweetest things on the planet but they are...two.
So take an autism diagnosis, a near recovery process, and suddenly a two year old. In the midst of another two year old who is used to running her own show.
It's chaotic.
And it's scary.
Lately, Justin and I have discussed in length about how scary it is. We are always over analyzing everything she does. She can be sweet and then in an instant completely tune us out. And most two year olds tune you out. Most two year olds do not listen to you and want to do whatever they please. But the minute she doesn't respond to her name, we panic.
Tonight, after a long day single parenting while Justin is away at a funeral, I had all three of them in the bathtub and I was attempting to wash her hair. I know Maddy doesn't like getting her hair washed. None of my kids do. But she was just being SO outrageously naughty. She was pushing and screaming and just wild. I raised my voice and she raised hers and it became this horrible battle between her and I. Finally I realized what I was doing.
I was acting out my own fears. My own fears that without ABA she was slowly regressing. She was slowly not answering her name. She was becoming erratic. But the reality is, that she wasn't doing any of these things out of context to a two year old. I grabbed her out of the tub, wrapped a towel around her and whisked her into my arms.
She didn't want to look at me. She didn't want anything to do with me. I don't blame her. We struggled for a minute and I apologized to her. She smiled at me, told me she was sorry, and wanted to get back into the tub.
I let her go into the tub and as she splashed with her sisters, I sobbed on the floor. What is wrong with me? I am so terrified that I am going to lose her again. I can't lose her again. I can't. We worked so hard.
And there it was. There I was. Trying to control something that I cannot control.
So there I was, again, on my knees praying to God that I would trust Him again in this. Trust Him. I have no control over this, no matter what I think. I don't.
She is so amazing that I can't bear to go through that again. I couldn't bear to go through it with any of my children...they are all amazing. I don't wish Autism on any one's child. I don't. It's heart wrenching. Even in the best outcome possible, there are still hardships.
So as I sobbed on the bathroom floor with my daughters in the tub, Maddy says to me, "Mama. Mama. Open eyes, Mama."
So I looked at her.
She says, "Mama sad."
I said "yes, Maddy. Mama is sad."
Maddy says, "It's ok, Mama. I love you."
"I love you too, Maddy. Oh how I love you." I manage to say to her beautiful eyes.
And that. is. so. amazing.
Thank You, God. You always have exactly what I need.
Even in joyous times, fear can creep in. And so quickly. But the fact that my daughter with Autism can tell me to open my eyes, recognize that I am sad, and tell me that she loves me in order to comfort me, that tells me that hope always blinds out fear.
May I always remember this moment when I am questioning. May I always think back to the time when I cried out and she comforted me. May I always remember that I'm not in charge. God is. That I will trust in Him and His ways.
There is always hope.
I know people whose children have autism. I do not know any people, personally, whose child has autism and has recovered. I don't know anyone whose child has reached near recovery in such a short amount of time.
And here is the truth of it.
It's terrifying.
It's great, wonderful, bliss, the best feeling in the world. Yes, it is those things.
But it is very scary.
Because I keep searching. Analyzing. Watching. Worrying. Waiting for the other shoe to drop.
When you take a child who was fine until 20 months, then suddenly regresses to a child in such a unrelative state, then quickly emerges into the vibrant, smiley, happy, sociable child that you hoped she would be; it's alot to take in.
And you have to remember that this child is two years old. TWO. And most two year olds are volatile little things. Prone to temper tantrums. Everything is an emotional battle from getting into a carseat to putting a shirt on. They are stubborn, misunderstood, and wild. They can be the sweetest things on the planet but they are...two.
So take an autism diagnosis, a near recovery process, and suddenly a two year old. In the midst of another two year old who is used to running her own show.
It's chaotic.
And it's scary.
Lately, Justin and I have discussed in length about how scary it is. We are always over analyzing everything she does. She can be sweet and then in an instant completely tune us out. And most two year olds tune you out. Most two year olds do not listen to you and want to do whatever they please. But the minute she doesn't respond to her name, we panic.
Tonight, after a long day single parenting while Justin is away at a funeral, I had all three of them in the bathtub and I was attempting to wash her hair. I know Maddy doesn't like getting her hair washed. None of my kids do. But she was just being SO outrageously naughty. She was pushing and screaming and just wild. I raised my voice and she raised hers and it became this horrible battle between her and I. Finally I realized what I was doing.
I was acting out my own fears. My own fears that without ABA she was slowly regressing. She was slowly not answering her name. She was becoming erratic. But the reality is, that she wasn't doing any of these things out of context to a two year old. I grabbed her out of the tub, wrapped a towel around her and whisked her into my arms.
She didn't want to look at me. She didn't want anything to do with me. I don't blame her. We struggled for a minute and I apologized to her. She smiled at me, told me she was sorry, and wanted to get back into the tub.
I let her go into the tub and as she splashed with her sisters, I sobbed on the floor. What is wrong with me? I am so terrified that I am going to lose her again. I can't lose her again. I can't. We worked so hard.
And there it was. There I was. Trying to control something that I cannot control.
So there I was, again, on my knees praying to God that I would trust Him again in this. Trust Him. I have no control over this, no matter what I think. I don't.
She is so amazing that I can't bear to go through that again. I couldn't bear to go through it with any of my children...they are all amazing. I don't wish Autism on any one's child. I don't. It's heart wrenching. Even in the best outcome possible, there are still hardships.
So as I sobbed on the bathroom floor with my daughters in the tub, Maddy says to me, "Mama. Mama. Open eyes, Mama."
So I looked at her.
She says, "Mama sad."
I said "yes, Maddy. Mama is sad."
Maddy says, "It's ok, Mama. I love you."
"I love you too, Maddy. Oh how I love you." I manage to say to her beautiful eyes.
And that. is. so. amazing.
Thank You, God. You always have exactly what I need.
Even in joyous times, fear can creep in. And so quickly. But the fact that my daughter with Autism can tell me to open my eyes, recognize that I am sad, and tell me that she loves me in order to comfort me, that tells me that hope always blinds out fear.
May I always remember this moment when I am questioning. May I always think back to the time when I cried out and she comforted me. May I always remember that I'm not in charge. God is. That I will trust in Him and His ways.
There is always hope.
Thursday, March 31, 2011
rockstar.
We are one day from the beginning of Autism Awareness Month. I'm so hyped.
I've been waiting awhile for a FULL month of dedication to Autism and raising awareness. Just when I think everyone on the planet has heard of Autism, I get random comments from people, "What's Autism?"
pause.
So here is an entire month for explanation and awareness.
Another reason why April is so near and dear to me is that, merely a year ago, I called Early Intervention about my concern for Maddy. April 16th, to be exact. It has been one wild year. I had no idea then what I was facing. No clue.
I went back through my emails with my bestie, Deanna, trying to remember what things were like at the beginning. It's kinda shocking because I know Maddy regressed further back than from the time I wrote this email.
April 13, 2010
Maddy.... I've had concerns with her from the beginning...like as a baby because she was never really all that great about eye contact. She was just so laid back and happy that I didn't think too much of it. She is such a busy little thing, independent, and happy. But can be in her own little world too. She rocks and moans...the ped assured me that was normal for kids learning to self soothe...but should she be doing that at the dinner table? She sometimes responds to her name. More times not. She will tune out everything and just stare...last night at the table, I kept saying her name and she would not respond and then I started waving at her and saying hello and soon Maelle started waving and saying hello and then Eva and finally she seemed to come back to us and saw us all waving and saying hi to her that she started giggling. She does point and she does acknowledge when I or Justin walk into the room when she isn't too engrossed in her playing. She says "hi, mama, up, down, ball, uh-oh, and hi there" but that is all. So I'm torn if she's just too laid back to care and I'm being over obsessed or if I'm missing something. Of course I will bring this up to my ped. when they have their 2 yr. check up in June and who knows, maybe in 2 months a switch will go off and they will both be talking up a storm. I can say that she does babble nonstop all day...it's just nonsense words in her own little language...making me feel like once she really gets it, she will never stop talking. Anyway...there was 20 minutes worth of me rambling about my worries.
By the time she was assessed at the end of April, she was not pointing. She was not doing any type of name recognition. She was not acknowledging Justin nor my own presence in the room. Her few words were gone. Gone.
I thought for awhile that Maddy never really regressed, she just stopped. Wow, was I wrong. She did, in a big way, in a short amount of time.
Alot of people tell me "oh you caught it just in time...good job Mom!" but I have to correct that. While, yes, I did have my concerns, it was Deanna who urged me to seek out Early Intervention. And being my bestie in the entire planet, her words were gospel and I did just that. Because, frankly, I didn't even KNOW about Early Intervention and if our state had such a thing.
Clearly I was clueless and my heart aches for all the other parents out there that have NO idea what kind of services are available to them. That is my heart's desire. So that no other mother has to send out that email and have no idea what to do. I knew when I looked at all the red flags for Autism that Maddy was them. Almost every single one of them.
Now.
Now Maddy is an Autism and ABA rockstar. She just is. She has truly kicked Autism's butt. She has given us so much hope. Any diagnosis is not the end all be all. ABA is what Maddy needed. It clicked in her brain. It put things back in her brain. And we are extremely fortunate to find such great people and resources. I have amazing friends and amazing people in their fields working hard for Maddy. An amazing creator guiding us all and giving us the blessing that she is. She is amazing. She is evidence of Him working.
We had a conference call about Maddy's progress with OT this morning and Stephanie said herself that her progress is nothing short of amazing. More astounding numbers and progress. When Stephanie had tested her in January, Maddy was still lagging behind in the OT world. She was, overall, less than 1% of kids her age. She had an 8 month delay, her hand eye coordination was less than 2% and her manual dexterity was less than 4%.
Those words were hard to hear in January. She had been soaring through everything and to hear that OT was still slowly progressing was awful. Stephanie could tell my dismay and reminded me of how hard we had to work just to get the cognition before she could really truly perform these activities. And that made sense. Logically. But my heart still hurt.
She retested her in March. She gained 6 months developmentally in 2 months chronological time. She gained 4 months on her peers and now only has a 4 month delay. This is within normal parameters since most kids have some kind of delay. Her grasping is at 50%, her hand use is 61%, eye hand coordination 41% (remember that less then 2% two months ago) and her manual dexterity is 47% (January was less than 4%). Her overall score is 39%. Amazing when you consider that you want it to be 50% to be considered "average".
Our twice a week trips have suddenly turned into once a week trips to the rehab center.
Suddenly.
We're not exactly sure what switch was flipped in her brain in January, but something clicked. Something happened. Because here she is. Our Autism Rockstar.
If someone sat me down and told me exactly what was going to happen last April, I would have laughed at their face...told them they were nuts...and walked away. If someone would have explained the depths of what we were going to do, I would have been terrified. I think back to July, August, September, October...such scary months. Such dark months. And now....
there is such hope now.
We have swam the depths of Autism, we were nearing shore, and now we are at the shore. Steadily shaking the last drips of water off our skin, as we walk, hand in hand, to the hope of the future.
Are we glancing back?
yes.
Because I will not let any child be abandoned out in that water.
ABA doesn't work for everyone. I get that. But it doesn't hurt anyone either. There is so much to be gained. SO much. If I had done all that work and the only thing I gained was the ability to hold Maddy's hand, I would have done it. No question. I would have done it. And I would do it again. And again. And again. I would do it until....
Please seek out your resources. Your child deserves it. Even if you have to be that loud mouth mom at a conference asking how your child can gain access to that free trial software...do it. Do it. I was that mom. And now this mom is rejoicing.
(Huge thanks again to Dr. Tarbox for listening to this mom and giving her a chance, to CARD, and to the SKILLS people. We heart you all. )
Never. Ever. give up.
If you need help, ask. You are NEVER alone. never.
I've been waiting awhile for a FULL month of dedication to Autism and raising awareness. Just when I think everyone on the planet has heard of Autism, I get random comments from people, "What's Autism?"
pause.
So here is an entire month for explanation and awareness.
Another reason why April is so near and dear to me is that, merely a year ago, I called Early Intervention about my concern for Maddy. April 16th, to be exact. It has been one wild year. I had no idea then what I was facing. No clue.
I went back through my emails with my bestie, Deanna, trying to remember what things were like at the beginning. It's kinda shocking because I know Maddy regressed further back than from the time I wrote this email.
April 13, 2010
Maddy.... I've had concerns with her from the beginning...like as a baby because she was never really all that great about eye contact. She was just so laid back and happy that I didn't think too much of it. She is such a busy little thing, independent, and happy. But can be in her own little world too. She rocks and moans...the ped assured me that was normal for kids learning to self soothe...but should she be doing that at the dinner table? She sometimes responds to her name. More times not. She will tune out everything and just stare...last night at the table, I kept saying her name and she would not respond and then I started waving at her and saying hello and soon Maelle started waving and saying hello and then Eva and finally she seemed to come back to us and saw us all waving and saying hi to her that she started giggling. She does point and she does acknowledge when I or Justin walk into the room when she isn't too engrossed in her playing. She says "hi, mama, up, down, ball, uh-oh, and hi there" but that is all. So I'm torn if she's just too laid back to care and I'm being over obsessed or if I'm missing something. Of course I will bring this up to my ped. when they have their 2 yr. check up in June and who knows, maybe in 2 months a switch will go off and they will both be talking up a storm. I can say that she does babble nonstop all day...it's just nonsense words in her own little language...making me feel like once she really gets it, she will never stop talking. Anyway...there was 20 minutes worth of me rambling about my worries.
By the time she was assessed at the end of April, she was not pointing. She was not doing any type of name recognition. She was not acknowledging Justin nor my own presence in the room. Her few words were gone. Gone.
I thought for awhile that Maddy never really regressed, she just stopped. Wow, was I wrong. She did, in a big way, in a short amount of time.
Alot of people tell me "oh you caught it just in time...good job Mom!" but I have to correct that. While, yes, I did have my concerns, it was Deanna who urged me to seek out Early Intervention. And being my bestie in the entire planet, her words were gospel and I did just that. Because, frankly, I didn't even KNOW about Early Intervention and if our state had such a thing.
Clearly I was clueless and my heart aches for all the other parents out there that have NO idea what kind of services are available to them. That is my heart's desire. So that no other mother has to send out that email and have no idea what to do. I knew when I looked at all the red flags for Autism that Maddy was them. Almost every single one of them.
Now.
Now Maddy is an Autism and ABA rockstar. She just is. She has truly kicked Autism's butt. She has given us so much hope. Any diagnosis is not the end all be all. ABA is what Maddy needed. It clicked in her brain. It put things back in her brain. And we are extremely fortunate to find such great people and resources. I have amazing friends and amazing people in their fields working hard for Maddy. An amazing creator guiding us all and giving us the blessing that she is. She is amazing. She is evidence of Him working.
We had a conference call about Maddy's progress with OT this morning and Stephanie said herself that her progress is nothing short of amazing. More astounding numbers and progress. When Stephanie had tested her in January, Maddy was still lagging behind in the OT world. She was, overall, less than 1% of kids her age. She had an 8 month delay, her hand eye coordination was less than 2% and her manual dexterity was less than 4%.
Those words were hard to hear in January. She had been soaring through everything and to hear that OT was still slowly progressing was awful. Stephanie could tell my dismay and reminded me of how hard we had to work just to get the cognition before she could really truly perform these activities. And that made sense. Logically. But my heart still hurt.
She retested her in March. She gained 6 months developmentally in 2 months chronological time. She gained 4 months on her peers and now only has a 4 month delay. This is within normal parameters since most kids have some kind of delay. Her grasping is at 50%, her hand use is 61%, eye hand coordination 41% (remember that less then 2% two months ago) and her manual dexterity is 47% (January was less than 4%). Her overall score is 39%. Amazing when you consider that you want it to be 50% to be considered "average".
Our twice a week trips have suddenly turned into once a week trips to the rehab center.
Suddenly.
We're not exactly sure what switch was flipped in her brain in January, but something clicked. Something happened. Because here she is. Our Autism Rockstar.
If someone sat me down and told me exactly what was going to happen last April, I would have laughed at their face...told them they were nuts...and walked away. If someone would have explained the depths of what we were going to do, I would have been terrified. I think back to July, August, September, October...such scary months. Such dark months. And now....
there is such hope now.
We have swam the depths of Autism, we were nearing shore, and now we are at the shore. Steadily shaking the last drips of water off our skin, as we walk, hand in hand, to the hope of the future.
Are we glancing back?
yes.
Because I will not let any child be abandoned out in that water.
ABA doesn't work for everyone. I get that. But it doesn't hurt anyone either. There is so much to be gained. SO much. If I had done all that work and the only thing I gained was the ability to hold Maddy's hand, I would have done it. No question. I would have done it. And I would do it again. And again. And again. I would do it until....
Please seek out your resources. Your child deserves it. Even if you have to be that loud mouth mom at a conference asking how your child can gain access to that free trial software...do it. Do it. I was that mom. And now this mom is rejoicing.
(Huge thanks again to Dr. Tarbox for listening to this mom and giving her a chance, to CARD, and to the SKILLS people. We heart you all. )
Never. Ever. give up.
If you need help, ask. You are NEVER alone. never.
Wednesday, March 30, 2011
Puzzled flyer.
updated to add: Location is Cavalier Evangelical Free Church
Monday, March 28, 2011
the funny thing about it.
I miss ABA.
I know. I know. Katt, are you nuts?!
Probably.
Okay, I don't totally miss ABA. I miss the camaraderie that ABA had brought us. My "ABAers" would meet every Monday night. We would have our weekly agenda and all the gab that comes with a group of 8 people coming together, week after week, to discuss one common goal: recover Maddy.
We would gather around my house, or Melissa's house, or the church and talk about our lives, talk about Maddy, and just talk. We had some interesting conversations. And our meetings, regardless of how "short" I promised each one would be, they always ended up being at least 2 hours...if not more.
You see, I love these people.
I love everything about them. I love how they gave up a part of their lives to help me get a huge part of mine back. They would come, week after week, and listen to me drone on about ABA. They put up with Maddy screaming and throwing tantrums at them. They did countless hours in a tiny room with that little girl. They put their heart and soul into teaching my little girl how to make the connections in her brain again. And they all did it...willingly. They cherished their time. They looked forward to their time. They loved on my little girl just as much as her own Mommy and Daddy did.
And now, our meetings are sparse. Maddy still has her sessions and they are peer play themed. Not much instruction is needed at this point. Teach Maddy to keep playing and to play appropriately with other people.
I'm not complaining about my miracle. I'm not.
I couldn't imagine my life without these people. I can't imagine my life any other way.
I just miss them. I miss our Mondays. I miss the closeness of us. I entrusted them with one of THE most precious things in the world. My baby.
Do I miss data sheets? NO. NEVER.
Do I miss having to keep up the insane pace of my genius daughter? Not really.
Do I miss the feeling that I have no idea what I'm doing? I don't know if that will ever truly leave me...but I've got peace that Maddy's ultimate life experience isn't up to me.
And it's not like I don't see my people. They are my best friends. I see them almost every day. I'm just such an emotional person. When I become as close as I have come with these people, I miss them about ten minutes after I said good bye to them. I'm such an emotional person, I was just distraught for days when my favorite television shows ended because I would MISS the characters. Silly. I know. But truth. When I form a connection, it is deep. And this connection is very deep.
I am forever grateful and thankful for my sisters. That's what they are to me. My ABA sisters. (Justin shouldn't be offended since he was the only boy...being that he's my husband and it would be weird to refer to him as my ABA brother)
I am happy to close the ABA chapter. I am. I just don't know any adequate way of thanking someone for helping me bring my daughter back. A simple thank you does not cut it. "Thanks again for that..." sounds ridiculous. Like they picked up Maddy from school and brought her home.
I know that just seeing her be the miracle she is...is probably more than enough for them. But I love them. And I hope they know that. I hope they know that they will forever be a very important part of my life. No matter where that life leads any of us.
Love you guys. I still think we need to get that bumper sticker that says "HONK if you love ABA" :)
I know. I know. Katt, are you nuts?!
Probably.
Okay, I don't totally miss ABA. I miss the camaraderie that ABA had brought us. My "ABAers" would meet every Monday night. We would have our weekly agenda and all the gab that comes with a group of 8 people coming together, week after week, to discuss one common goal: recover Maddy.
We would gather around my house, or Melissa's house, or the church and talk about our lives, talk about Maddy, and just talk. We had some interesting conversations. And our meetings, regardless of how "short" I promised each one would be, they always ended up being at least 2 hours...if not more.
You see, I love these people.
I love everything about them. I love how they gave up a part of their lives to help me get a huge part of mine back. They would come, week after week, and listen to me drone on about ABA. They put up with Maddy screaming and throwing tantrums at them. They did countless hours in a tiny room with that little girl. They put their heart and soul into teaching my little girl how to make the connections in her brain again. And they all did it...willingly. They cherished their time. They looked forward to their time. They loved on my little girl just as much as her own Mommy and Daddy did.
And now, our meetings are sparse. Maddy still has her sessions and they are peer play themed. Not much instruction is needed at this point. Teach Maddy to keep playing and to play appropriately with other people.
I'm not complaining about my miracle. I'm not.
I couldn't imagine my life without these people. I can't imagine my life any other way.
I just miss them. I miss our Mondays. I miss the closeness of us. I entrusted them with one of THE most precious things in the world. My baby.
Do I miss data sheets? NO. NEVER.
Do I miss having to keep up the insane pace of my genius daughter? Not really.
Do I miss the feeling that I have no idea what I'm doing? I don't know if that will ever truly leave me...but I've got peace that Maddy's ultimate life experience isn't up to me.
And it's not like I don't see my people. They are my best friends. I see them almost every day. I'm just such an emotional person. When I become as close as I have come with these people, I miss them about ten minutes after I said good bye to them. I'm such an emotional person, I was just distraught for days when my favorite television shows ended because I would MISS the characters. Silly. I know. But truth. When I form a connection, it is deep. And this connection is very deep.
I am forever grateful and thankful for my sisters. That's what they are to me. My ABA sisters. (Justin shouldn't be offended since he was the only boy...being that he's my husband and it would be weird to refer to him as my ABA brother)
I am happy to close the ABA chapter. I am. I just don't know any adequate way of thanking someone for helping me bring my daughter back. A simple thank you does not cut it. "Thanks again for that..." sounds ridiculous. Like they picked up Maddy from school and brought her home.
I know that just seeing her be the miracle she is...is probably more than enough for them. But I love them. And I hope they know that. I hope they know that they will forever be a very important part of my life. No matter where that life leads any of us.
Love you guys. I still think we need to get that bumper sticker that says "HONK if you love ABA" :)
Sunday, March 20, 2011
Puzzled Over Autism.
Our 1st Annual "Puzzled Over Autism" event is happening April 30th. Yes, the last day of April, which is Autism Awareness Month.
We will be puzzling for 12 hours straight in raising awareness for autism. Local community people can get registration forms to become a "puzzler" and then ask for monetary pledges for how many hours they will be puzzling.
The symbol for Autism is the puzzle piece, if you are wondering where this comes from.
There will be a Spaghetti Benefit Supper at 5pm that evening to raise money for our medical bills.
If you are unable to attend but would like to donate, you can through this blog or you can email me at maddysvoice@yahoo.com or find us on Facebook http://www.facebook.com/maddysvoice
Thank you for all your support! I "hear" that we've been getting alot more readers than I had originally thought. Thank you for reading and sharing this blog. We hope that in writing of our experience we might give hope to others out there, no matter what they are facing. There is hope. There is a loving God who is always there. Trust in that.
We will be puzzling for 12 hours straight in raising awareness for autism. Local community people can get registration forms to become a "puzzler" and then ask for monetary pledges for how many hours they will be puzzling.
The symbol for Autism is the puzzle piece, if you are wondering where this comes from.
There will be a Spaghetti Benefit Supper at 5pm that evening to raise money for our medical bills.
If you are unable to attend but would like to donate, you can through this blog or you can email me at maddysvoice@yahoo.com or find us on Facebook http://www.facebook.com/maddysvoice
Thank you for all your support! I "hear" that we've been getting alot more readers than I had originally thought. Thank you for reading and sharing this blog. We hope that in writing of our experience we might give hope to others out there, no matter what they are facing. There is hope. There is a loving God who is always there. Trust in that.
Sunday, March 13, 2011
here we are.
There is a buzz around Facebook.
A buzz that I created, I will admit it.
A simple post that said, so much to say, but for now, say good-bye to ABA.
I left you all in a bit of a shadowy mist wondering what in the world was happening. Good-bye to ABA?! Are you nuts?!
The fact is this. She doesn't need it anymore. We've expounded our limits of what we can appropriately teach a girl who is almost 3 years old. We could easily teach her to read, ABA style, but most almost 3 year olds don't read. Most 3 year olds don't care to read. They love to play. And giggle. And run. And sing. And be goofy.
And the sole purpose of ABA is to teach basic life skills. To rewire the brain from Autism world to reality. And we have done that.
We have met with Dr. MAL, who continues to be astounded by Maddy's progress. She is amazed. With every new emerging detail of Maddy's development, her eyes would grow larger and the smile broader. Maddy, herself, was at the latest meeting and while the first half she was grumpy, tired, and coughing from her cold; she eventually moved into her happy bubbly self, playing with toys, singing songs, and cuddling with us. Answering questions. Full eye contact. Even called Dr. MAL by her first name when I asked her to.
Maddy had begun her ABA journey with just shy of 30 hours a week in September. Full intensive ABA. About 3 months in, we had to backpeddle to 20 hours, purely due to losing Melissa to bedrest, but she did fine with it. In January (was it January?) we cut her ABA in half to see how she would do and added peer play. By late February, we were down to 5 hours a week...with 5 hours of peer play and another 2 hours of Speech and OT. Her peer play included going into the private preschool that her sisters attend for 30 minutes at a time with 3 year olds.
Last week, she was sick with a double ear infection, Justin was away on business, and another member of our team went on bedrest. So there was no ABA last week. And Maddy...was...fine. Granted, she was sick, but she was ok. No regression.
So it is time to test the waters. To see how well Maddy can do with just peer play and general one-on-one time with her teachers. We plan to be adding more and more time in the preschool while it is still in session, with a goal of having her attending the preschool for the full 2 hours (with one of us to help her) by the end of May when school lets out. To prepare her, the best we can, for what this fall will bring. We have taught her all that we can, now we must apply it fully.
The day that we had the meeting with Dr. MAL, I was with my brother and his family as he had undergone a thyroidectomy to remove cancer. (he is doing really well, by the way) So I went to the meeting, then drove the hour drive back to see my brother, spent the night and came home to a busy Thursday. Friday, we had Eva's best friend over and all 4 girls played together nicely. Then yesterday.
It was a typical Saturday with Justin working and the girls and I were storm stayed at home (a major blizzard had blown through and prevented any kind of outdoor activity.) And Maddy was just purely amazing. I can't even describe it. She was just so....Maddy. She followed Eva around like her shadow and played every single game that E wanted to play. She played Little People with Maelle. She giggled with me at the kitchen table. She told me "secrets", gave me "big hugs", danced to the Alphabet song, worked on potty training (she is doing REALLY well at this!), and was about as neuro-typical as she could possibly be. She took her nap. She watched TV. She ate her supper (kinda...my kids don't eat). She wrestled with Justin. She sat on the couch, ate popcorn and watched Aladdin with her sisters. And at bedtime, without any melatonin, I could hear her in her room, talking herself to sleep.
I have never before heard Maddy talk herself to sleep. Even as a baby, she never did this. She would always be rocking and groaning. Or just groaning before she was able to rock.
If you have never heard a child talk themselves to sleep, I encourage you to find someone with kids and ask to hear it. It's beautiful. She was carrying on about something and giggling. Every so often she would get loud then soft. Eventually, she did rock, but only to get me to come into her room where she informed me that her "MILK EMPTY! EMPTY! EMPTY!" and once I gave her more, off to sleep she went. (I know. I should not give her milk at bedtime. She has a pacifier too. these are the least of my major concerns. If, at 16, she requires these things...I will become alarmed)
I could honestly cry, for days, about what this feels like. To see your child go from happy baby, to lost in autism, to emerging giggling toddler/preschooler. To see the sparkle return to her eyes. To hear full sentence explanations coming out of her mouth. To have her reach for my hand. To look into her eyes and she says "love you, mommy" before you ever even have a chance to tell her that you love her.
It is. amazing.
And any given moment, I want to thank God for this amazing miracle child that He has given me. You never want to ask for a miracle but when you are blessed with one, you can never, EVER, deny His existence. He is. And though we should not need proof, Maddy is it. Miracles do happen.
The dark side to this would be the doubters. The people that claim she must have been misdiagnosed or that we're CRAZY to think that she is doing so well.
Misdiagnosis?
She was not misdiagnosed. And to say that she was does a disservice to me, Maddy, my whole family, our whole team, the autism and ABA community, and God himself. Miracles happen in the world of cancer and other related diseases daily. They don't skip over autism.
Are we crazy?
Well, yes, everyone is a bit crazy. But anyone who knew Maddy before and knows her now would say we are not. She is doing so well. In September, we sat for hours just to get her to LOOK at us and now, she searches for our eyes for confirmation of what she is feeling or asking.
Is she recovered?
This is the trickiest of questions. My answer is....not yet. Close. But not yet. We are approaching this with cautionary optimism. She is still dealing with some sensory issues and hand strength. But we came from a time when we didn't even know what she was cognitively understanding to having weak hands with sensitivity. Her head sensitivity is getting better. She lets me do her hair now and gets excited when she has her "piggies" or any kind of pony tail. Yesterday she let me clean one of her ears, before I couldn't even look at her ears, let alone touch them. But her sisters were having their ears cleaned and she said "Maddy's turn!" and laid on my lap and let me clean one of them before she was done.
Off handedly we asked her if her name was Maelle and she said, "No. I'm Maddy. That's me. Maddy. Not Maelle." (funny since she pronounces Maelle like MAIL and not May-el. But Maelle still calls her Manny from time to time so I think they're even)
We go back to see Dr. MAL in 2-3 months. When, most likely, she will reassess the autism diagnosis. When, most likely and Lord willing, she will lose her autism diagnosis. Our insurance company now is blaming the paperwork that states they are paying for her visits on an error by a reviewer and that we are accountable. Amazing that we have to pay for someone else's mistake. Oh the world of insurance.
But it does not even barely shadow what was happened. Nothing can touch this. I have my daughter back. The beautiful, happy, giggly, sweet, goofy, energetic, social, laid-back little girl that I always dreamed she would be. And more. When she was born, she was such a sweet baby. Always grinning. Quiet and content. I had dreams of what she would be like when she was 3. To see her become them and more so, is breathtaking.
I prayed to God that my baby would return to me by the time she was 4. Please. God. bring her back to me by 4. (most aba programs are 2-4 years long) Please. If you bring her back, I can survive those 2 years of blackness. I will. I can. Please. God.
7 months later. My baby is back. 7 months.
7 months.
Thank you God. I can never say thank you enough. Thank you. Thank YOU.
Thank you for all my beautiful friends and family who work with us, daily. Who listened to my sobs. Who brought meals for my family. Who prayed. and prayed. and prayed. Who gave up time with their own families to help mine. Who gave to us financially. Who read this blog and encouraged me. Who shared this blog. Who sent me facebook messages. All of you. Thank you.
Maddy is back. She is our miracle. Eva and Maelle have their sister back. Justin and I have our daughter back.
Here we are. all of us. Thank you, Jesus.
A buzz that I created, I will admit it.
A simple post that said, so much to say, but for now, say good-bye to ABA.
I left you all in a bit of a shadowy mist wondering what in the world was happening. Good-bye to ABA?! Are you nuts?!
The fact is this. She doesn't need it anymore. We've expounded our limits of what we can appropriately teach a girl who is almost 3 years old. We could easily teach her to read, ABA style, but most almost 3 year olds don't read. Most 3 year olds don't care to read. They love to play. And giggle. And run. And sing. And be goofy.
And the sole purpose of ABA is to teach basic life skills. To rewire the brain from Autism world to reality. And we have done that.
We have met with Dr. MAL, who continues to be astounded by Maddy's progress. She is amazed. With every new emerging detail of Maddy's development, her eyes would grow larger and the smile broader. Maddy, herself, was at the latest meeting and while the first half she was grumpy, tired, and coughing from her cold; she eventually moved into her happy bubbly self, playing with toys, singing songs, and cuddling with us. Answering questions. Full eye contact. Even called Dr. MAL by her first name when I asked her to.
Maddy had begun her ABA journey with just shy of 30 hours a week in September. Full intensive ABA. About 3 months in, we had to backpeddle to 20 hours, purely due to losing Melissa to bedrest, but she did fine with it. In January (was it January?) we cut her ABA in half to see how she would do and added peer play. By late February, we were down to 5 hours a week...with 5 hours of peer play and another 2 hours of Speech and OT. Her peer play included going into the private preschool that her sisters attend for 30 minutes at a time with 3 year olds.
Last week, she was sick with a double ear infection, Justin was away on business, and another member of our team went on bedrest. So there was no ABA last week. And Maddy...was...fine. Granted, she was sick, but she was ok. No regression.
So it is time to test the waters. To see how well Maddy can do with just peer play and general one-on-one time with her teachers. We plan to be adding more and more time in the preschool while it is still in session, with a goal of having her attending the preschool for the full 2 hours (with one of us to help her) by the end of May when school lets out. To prepare her, the best we can, for what this fall will bring. We have taught her all that we can, now we must apply it fully.
The day that we had the meeting with Dr. MAL, I was with my brother and his family as he had undergone a thyroidectomy to remove cancer. (he is doing really well, by the way) So I went to the meeting, then drove the hour drive back to see my brother, spent the night and came home to a busy Thursday. Friday, we had Eva's best friend over and all 4 girls played together nicely. Then yesterday.
It was a typical Saturday with Justin working and the girls and I were storm stayed at home (a major blizzard had blown through and prevented any kind of outdoor activity.) And Maddy was just purely amazing. I can't even describe it. She was just so....Maddy. She followed Eva around like her shadow and played every single game that E wanted to play. She played Little People with Maelle. She giggled with me at the kitchen table. She told me "secrets", gave me "big hugs", danced to the Alphabet song, worked on potty training (she is doing REALLY well at this!), and was about as neuro-typical as she could possibly be. She took her nap. She watched TV. She ate her supper (kinda...my kids don't eat). She wrestled with Justin. She sat on the couch, ate popcorn and watched Aladdin with her sisters. And at bedtime, without any melatonin, I could hear her in her room, talking herself to sleep.
I have never before heard Maddy talk herself to sleep. Even as a baby, she never did this. She would always be rocking and groaning. Or just groaning before she was able to rock.
If you have never heard a child talk themselves to sleep, I encourage you to find someone with kids and ask to hear it. It's beautiful. She was carrying on about something and giggling. Every so often she would get loud then soft. Eventually, she did rock, but only to get me to come into her room where she informed me that her "MILK EMPTY! EMPTY! EMPTY!" and once I gave her more, off to sleep she went. (I know. I should not give her milk at bedtime. She has a pacifier too. these are the least of my major concerns. If, at 16, she requires these things...I will become alarmed)
I could honestly cry, for days, about what this feels like. To see your child go from happy baby, to lost in autism, to emerging giggling toddler/preschooler. To see the sparkle return to her eyes. To hear full sentence explanations coming out of her mouth. To have her reach for my hand. To look into her eyes and she says "love you, mommy" before you ever even have a chance to tell her that you love her.
It is. amazing.
And any given moment, I want to thank God for this amazing miracle child that He has given me. You never want to ask for a miracle but when you are blessed with one, you can never, EVER, deny His existence. He is. And though we should not need proof, Maddy is it. Miracles do happen.
The dark side to this would be the doubters. The people that claim she must have been misdiagnosed or that we're CRAZY to think that she is doing so well.
Misdiagnosis?
She was not misdiagnosed. And to say that she was does a disservice to me, Maddy, my whole family, our whole team, the autism and ABA community, and God himself. Miracles happen in the world of cancer and other related diseases daily. They don't skip over autism.
Are we crazy?
Well, yes, everyone is a bit crazy. But anyone who knew Maddy before and knows her now would say we are not. She is doing so well. In September, we sat for hours just to get her to LOOK at us and now, she searches for our eyes for confirmation of what she is feeling or asking.
Is she recovered?
This is the trickiest of questions. My answer is....not yet. Close. But not yet. We are approaching this with cautionary optimism. She is still dealing with some sensory issues and hand strength. But we came from a time when we didn't even know what she was cognitively understanding to having weak hands with sensitivity. Her head sensitivity is getting better. She lets me do her hair now and gets excited when she has her "piggies" or any kind of pony tail. Yesterday she let me clean one of her ears, before I couldn't even look at her ears, let alone touch them. But her sisters were having their ears cleaned and she said "Maddy's turn!" and laid on my lap and let me clean one of them before she was done.
Off handedly we asked her if her name was Maelle and she said, "No. I'm Maddy. That's me. Maddy. Not Maelle." (funny since she pronounces Maelle like MAIL and not May-el. But Maelle still calls her Manny from time to time so I think they're even)
We go back to see Dr. MAL in 2-3 months. When, most likely, she will reassess the autism diagnosis. When, most likely and Lord willing, she will lose her autism diagnosis. Our insurance company now is blaming the paperwork that states they are paying for her visits on an error by a reviewer and that we are accountable. Amazing that we have to pay for someone else's mistake. Oh the world of insurance.
But it does not even barely shadow what was happened. Nothing can touch this. I have my daughter back. The beautiful, happy, giggly, sweet, goofy, energetic, social, laid-back little girl that I always dreamed she would be. And more. When she was born, she was such a sweet baby. Always grinning. Quiet and content. I had dreams of what she would be like when she was 3. To see her become them and more so, is breathtaking.
I prayed to God that my baby would return to me by the time she was 4. Please. God. bring her back to me by 4. (most aba programs are 2-4 years long) Please. If you bring her back, I can survive those 2 years of blackness. I will. I can. Please. God.
7 months later. My baby is back. 7 months.
7 months.
Thank you God. I can never say thank you enough. Thank you. Thank YOU.
Thank you for all my beautiful friends and family who work with us, daily. Who listened to my sobs. Who brought meals for my family. Who prayed. and prayed. and prayed. Who gave up time with their own families to help mine. Who gave to us financially. Who read this blog and encouraged me. Who shared this blog. Who sent me facebook messages. All of you. Thank you.
Maddy is back. She is our miracle. Eva and Maelle have their sister back. Justin and I have our daughter back.
Here we are. all of us. Thank you, Jesus.
Tuesday, February 22, 2011
for the record.
I am only trying to help my daughter.
Our focus is on nothing less than helping our daughter grow into a responsible, intelligent, capable human being. To be able to live a full life. Have a job. Contribute to society. To share the love of God (Lord willing that she will grow to know Him and love Him). To laugh. To cry. To giggle with her sisters. To call us on the phone from college and ask for more money. To be everything that she was created to be.
Nothing more.
Nothing less.
And yet.....
Yesterday and today in a round about way, with much of confusion, we discovered that our insurance company (the Blues) decided to not pay for our Skype visits with Dr. MAL. To not pay for our ABA workshop. To request their money back for the payments they have already made for these appointments.
We have been getting countless letters from the Blues stating that they are paying for the visits. We (the parents) are not responsible for payment of the services rendered. So, we, the silly humans that we are, believed these written letters and thought we had made some kind of triumph in the world of insurance.
Apparently not.
Because, apparently, if you are an insurance company, you can demand to get your money back on things you already deemed covered and paid for.
Really, Blues, because I would love to get the last year of my life back. Can you manage that too?
Can you look my daughter in the eye, (assuming she can look you in the eye, she did have to learn that through ABA, after all) and tell her that you won't pay for her services? Can you look at her and tell her that she must live the rest of her life in her own little world without any regard to what is around her, because she was born that way? Can you tell her, that's too bad? "Sorry, kid, you got a bad hand. There is this treatment over here that has been proven to work but we don't cover that. Because we're in it for the money. And frankly, you're too expensive."
Because I can't.
I do not care what I have to do. My daughter will have a life.
If I have to live out of my car, in the dead of winter, just to give her a glimmer of the sun, I will.
Don't pay for her visits. That's fine.
She will prove all of your "doctors" wrong.
Our focus is on nothing less than helping our daughter grow into a responsible, intelligent, capable human being. To be able to live a full life. Have a job. Contribute to society. To share the love of God (Lord willing that she will grow to know Him and love Him). To laugh. To cry. To giggle with her sisters. To call us on the phone from college and ask for more money. To be everything that she was created to be.
Nothing more.
Nothing less.
And yet.....
Yesterday and today in a round about way, with much of confusion, we discovered that our insurance company (the Blues) decided to not pay for our Skype visits with Dr. MAL. To not pay for our ABA workshop. To request their money back for the payments they have already made for these appointments.
We have been getting countless letters from the Blues stating that they are paying for the visits. We (the parents) are not responsible for payment of the services rendered. So, we, the silly humans that we are, believed these written letters and thought we had made some kind of triumph in the world of insurance.
Apparently not.
Because, apparently, if you are an insurance company, you can demand to get your money back on things you already deemed covered and paid for.
Really, Blues, because I would love to get the last year of my life back. Can you manage that too?
Can you look my daughter in the eye, (assuming she can look you in the eye, she did have to learn that through ABA, after all) and tell her that you won't pay for her services? Can you look at her and tell her that she must live the rest of her life in her own little world without any regard to what is around her, because she was born that way? Can you tell her, that's too bad? "Sorry, kid, you got a bad hand. There is this treatment over here that has been proven to work but we don't cover that. Because we're in it for the money. And frankly, you're too expensive."
Because I can't.
I do not care what I have to do. My daughter will have a life.
If I have to live out of my car, in the dead of winter, just to give her a glimmer of the sun, I will.
Don't pay for her visits. That's fine.
She will prove all of your "doctors" wrong.
Tuesday, February 15, 2011
wondering.
I was looking through pictures today. I have a dear friend of mine who just had her baby boy and with me, and probably with all moms, the new baby makes me want to look at pictures of when my girls were babies. When they were so tiny. Just little 7 and 5 pounders.
But I have this problem when I look at pictures of when they were babies. I'm not too sure that I can even truly describe how I feel when I look at them. But it's extremely crushing to look at pictures of Maddy in her infant and early toddler stages.
Even in this wonderful time where she is getting so much better and her future is looking so bright. It is still exceptionally hard.
I see her bright smiles and goofy grins. She was such a beautiful infant.
I find myself searching those pictures for some kind of sign. Some kind of hint. Where was it? When was it? When did autism begin to creep in? Can I see it?
And I can. and it's not necessarily IN the pictures themselves but in the absence of them. There is quite a stretch of time that I don't really have any pictures. Of any of the girls. And I can make all the excuses in the world about how busy we were with 2 toddlers and a preschooler but the fact remains that the pictures aren't there. There are a few. But not the magnitude of them before and after.
Then there are the Easter pictures from last year and when Maddy hurt her finger. And I almost get physically ill just thinking about that time.
The case could be made that the wounds are still too open and raw. I haven't had time for real, true, healing from that time. What a dark dark time. I think it was by far the hardest time in my life. And I have had alot of hard times. Trust me. And I probably have many more to come...that's just how life is. Good times and hard times.
The Easter pictures are cute but you cannot ignore the vacant look on Maddy's face. The hollowness of her stare. The fact that she wouldn't even look at the camera most times. And it was so....instant. Yet at the time, it wasn't. But looking at the dates and the pictures .... she has a bright smile in January and by April she was vacant.
She had underlying issues all along. I know this. But seeing them in photographic bibliography...it looks so sudden.
Example: here is the two of us in January of 2010
But I have this problem when I look at pictures of when they were babies. I'm not too sure that I can even truly describe how I feel when I look at them. But it's extremely crushing to look at pictures of Maddy in her infant and early toddler stages.
Even in this wonderful time where she is getting so much better and her future is looking so bright. It is still exceptionally hard.
I see her bright smiles and goofy grins. She was such a beautiful infant.
I find myself searching those pictures for some kind of sign. Some kind of hint. Where was it? When was it? When did autism begin to creep in? Can I see it?
And I can. and it's not necessarily IN the pictures themselves but in the absence of them. There is quite a stretch of time that I don't really have any pictures. Of any of the girls. And I can make all the excuses in the world about how busy we were with 2 toddlers and a preschooler but the fact remains that the pictures aren't there. There are a few. But not the magnitude of them before and after.
Then there are the Easter pictures from last year and when Maddy hurt her finger. And I almost get physically ill just thinking about that time.
The case could be made that the wounds are still too open and raw. I haven't had time for real, true, healing from that time. What a dark dark time. I think it was by far the hardest time in my life. And I have had alot of hard times. Trust me. And I probably have many more to come...that's just how life is. Good times and hard times.
The Easter pictures are cute but you cannot ignore the vacant look on Maddy's face. The hollowness of her stare. The fact that she wouldn't even look at the camera most times. And it was so....instant. Yet at the time, it wasn't. But looking at the dates and the pictures .... she has a bright smile in January and by April she was vacant.
She had underlying issues all along. I know this. But seeing them in photographic bibliography...it looks so sudden.
Example: here is the two of us in January of 2010
Here she is in April of 2010. Yes a very cute picture and she just got a haircut. But I could not get her to look at me or the camera.
I do love both of those pictures. I think her Easter picture is cute. But I remember all of what wasn't happening in her while taking that picture.
I bring up this subject because every year I make a photobook for each of their grandparents and for us to have. I am not a scrapbooker (scrapper) and I don't have time to post pictures all the time. But every January, I sit down for several hours and create these photobooks for the prior year. And I love those books!
This year. It just wasn't getting done. And at first I blamed it on my very real and very busy schedule. But then today while I'm sick with the stomach flu, it donned on me. The real reason why I hadn't made those books yet.
I can't face last year.
Not yet.
It's gut wrenching to think of where we were. I KNOW where we are now. And I need to stay in the "how we are doing now" mentality and not focus on where we were. Not yet.
I wonder when exactly I will be able to deal with then.
And I don't think anyone can tell me the answer to that unless they have been where I have. I don't know any other mothers of recovered autistic children. How sad is that. Sad for all those moms out there.
I remember Catherine Maurice writing about how she would watch Anne-Marie after she had been recovered and how she would be searching for any sort of missed sign of autism. She wondered when she would stop doing that. Nice to know that's natural.
Maddy isn't 100% fully recovered at this point. But it is quite clear that she will be someday.
Don't get me wrong. I am completely THRILLED beyond measure and THANKFUL beyond depth that Maddy is doing so amazing. This isn't any kind of pity party. Just the reality of the emotion of being a mother.
I don't know if I will ever be able to fully talk about the "dark time" and I'm sure all of my girls will ask about it. I can be thankful that I will able to have a conversation with Maddy about this time in her life and that she will fully comprehend and have an actual conversation with me about it.
I can be exceptionally happy with that.
Thursday, February 10, 2011
the littlest of things.
Anyone with a child with special needs will tell you that you will quickly begin to rejoice in the little things. Tiny. Obscure. Little. Things.
And you won't really know when or what you will be rejoicing.
For us, we hit a recent milestone when we could finally put pillowcases on her pillows again. Sounds funny but Maddy used to crawl inside the pillow case with the pillow in it and rock against the wall or the side of her bed. We could understand her wanting that type of closeness but really didn't want her to suffocate in the process.
She has not had a pillow case on her pillow for well over a year now. Sometimes we would catch her in her sisters' room in their pillow cases just rocking for the fun of it. So we had to be very careful about where she was and what she was doing.
Then a few weeks ago when she was sick with the stomach flu, on a whim, I put Justin's pillow in there so she could sit up higher and make her tummy feel better. I didn't even THINK about the pillow case. She didn't bother it. So I kept it in there. And then a few days later put a new pillow case on the other pillow and still nothing.
Last night I bought her new bedding for her bed. Pillow cases and shams and all. I was so excited to finally be able to "trust" her with her bedding.
It sounds so odd. I know it does. But it's so great.
This is what I mean by the littlest of things. Most parents don't get a thrill from buying their kids a pillowcase.
Lately she has let me put her hair in pigtails and gets overly excited when she sees her cute little piggies in the mirror. She loves them. Now what is still sort of a struggle is getting easier. She's understanding that I'm not trying to torture her by fixing her hair. I'm making her "pretty" and she can grasp what "pretty" means. In relation to a 2 year old, anyway.
It is so fascinating watching her come out of her autism shell. Every parent gets excited when their child starts to talk and interact with them. When you have worked as hard as we have and continue to work, it's even more thrilling. It's hard sometimes when she does things that we know she can do better at. When she throws a tantrum and we get frustrated but then have to remember she is still TWO after all. So that isn't necessarily an "autism tantrum" but just a normal "two year old - I don't want to do anything you tell me" tantrum.
All of this work...while we are so very tired...is very much worth it. For every little moment. Every little blessing that God shows us through Maddy. Worth it.
So we'll keep on. Worn and tired but inspired by something so little as a pillow case.
And you won't really know when or what you will be rejoicing.
For us, we hit a recent milestone when we could finally put pillowcases on her pillows again. Sounds funny but Maddy used to crawl inside the pillow case with the pillow in it and rock against the wall or the side of her bed. We could understand her wanting that type of closeness but really didn't want her to suffocate in the process.
She has not had a pillow case on her pillow for well over a year now. Sometimes we would catch her in her sisters' room in their pillow cases just rocking for the fun of it. So we had to be very careful about where she was and what she was doing.
Then a few weeks ago when she was sick with the stomach flu, on a whim, I put Justin's pillow in there so she could sit up higher and make her tummy feel better. I didn't even THINK about the pillow case. She didn't bother it. So I kept it in there. And then a few days later put a new pillow case on the other pillow and still nothing.
Last night I bought her new bedding for her bed. Pillow cases and shams and all. I was so excited to finally be able to "trust" her with her bedding.
It sounds so odd. I know it does. But it's so great.
This is what I mean by the littlest of things. Most parents don't get a thrill from buying their kids a pillowcase.
Lately she has let me put her hair in pigtails and gets overly excited when she sees her cute little piggies in the mirror. She loves them. Now what is still sort of a struggle is getting easier. She's understanding that I'm not trying to torture her by fixing her hair. I'm making her "pretty" and she can grasp what "pretty" means. In relation to a 2 year old, anyway.
It is so fascinating watching her come out of her autism shell. Every parent gets excited when their child starts to talk and interact with them. When you have worked as hard as we have and continue to work, it's even more thrilling. It's hard sometimes when she does things that we know she can do better at. When she throws a tantrum and we get frustrated but then have to remember she is still TWO after all. So that isn't necessarily an "autism tantrum" but just a normal "two year old - I don't want to do anything you tell me" tantrum.
All of this work...while we are so very tired...is very much worth it. For every little moment. Every little blessing that God shows us through Maddy. Worth it.
So we'll keep on. Worn and tired but inspired by something so little as a pillow case.
Thursday, January 27, 2011
welcome back.
On the heels of such great news about our insurance coverage comes other good news. It is news that we were not expecting to hear this soon. News that we hoped we would hear someday...
We are in the middle of the "transition" from Early Intervention to preschool. There is alot of jargon that I will spare you with, but basically the state intervention services stop and the state school system takes over. All of this is federally mandated. So when I say "state" it really is state and federal...but that's really beside the point.
Because of that transition, the school system requires a renewal of all the prior assessments. That means the EI team comes out again with their big bag of toys, along with speech or OT or PT...and they do the same testing that they initially did on your child to see where they are. On top of that, they ask for assessments from any other sources like the SLP they see on a more frequent basis.
Bottom line. It's alot of testing.
So when the SLP came out to reassess Maddy, something was quite obvious. Maddy.
And after her testing, she looked at me and asked, "so what concerns do you have with her speech now?"
And I looked at her and looked at Maddy and I was baffled. "um...none. I mean, sure, it'd be great if she spoke more often in full sentences but she is quickly getting there and she is well within the age range."
Then I kind of stopped. Wait. I have no concerns? No viable major pressing issues?
I thought, wow. How did we get here?
Shortly after their visit, we had a meeting with Dr. MAL. The main issue was Maddy's sleep and how amazing it had changed in the last 2 weeks. Shorten a nap and reinforce a wake up time and suddenly, she's sleeping a heck of a lot better. Wild.
Dr. MAL paused for a moment and said, "I've never gotten to say this to anyone before, but I think it's time that we start decreasing her ABA hours."
Welcome to uncharted territory.
We were just starting to introduce peer play; finding the peers and the times to do it and now suddenly we can take that ABA time and cut it in half and replace that time with functional peer play. We're going from 20 hours weekly of ABA to 10.
She's doing that well.
She has managed to master in a matter of nearly six months what most "good" ABA students accomplish in two years.
Did you catch that?
2 years worth of learning in 6 months.
Dr. MAL has never had a child phase out of ABA like this. Usually, she told us, they are phasing out ABA because the child is going to be starting school and they have to cut back in order to make the time for kindergarten.
She is academically over the requirements for preschool.
Socially...she is learning. And as usual, Maddy is a quick study. We have hopes of potentially letting her "try out" preschool in May for a few sessions at a time.
Now before I get too ahead of myself...let me say this, we're not out of the woods yet. There are still things that we need to work on.
But I can say this...we're at the edge of the forest. Instead of being fully engulfed in a sea of autism, we are in shallow waters with our eyes focusing on the ever increasing shoreline.
To take a child who less than a year ago, would not look you in the eye, would not respond to her name, would not even acknowledge your presence in the room, would never request anything from you....to suddenly a bright brown eyed girl who walks into the room and says while waving, "Hi guys! I'm Maddy!" and "Mama, come here. Open gate. Me in. please."
The last two weeks we have been experiencing "twin moments" to the point where it is almost daily now. Maddy and her twin, Maelle, playing tiny little games together. Making pretend snow angels on the carpet in Maddy's room, doing puzzles on their play table while sharing the pieces, running from room to room while dancing to their little music boxes, and making funny faces at each other in the window at the hospital. Suddenly, this friendship is erupting. Granted, they still fight. ALOT. But to see them socially playing together and finding the companionship of having a twin sister....brings me to tears.
Last Friday I took them into Rehab therapy without the stroller. Without the backpacks. Just two little 2.5 year olds holding each of my hands. And they were great. They walked with me. They listened to me. They took turns going potty. They washed their hands. They walked right with me in all the little steps they had to do in order to get to their speech therapy. It was a wonderful moment. I finally felt like I had a handle on this. This "twin" thing.
That finally my hopes and dreams for my little girls are beginning to form again. It's not that I ever lost them, they got blurry for awhile. They got lost for awhile. I got lost for awhile.
If you can look at all of that and see how amazing she is. How extraordinary her story is. You cannot deny the presence of God in all of this. I'm sorry but you can't. These are unreal results. Unreal. Everyone is speechless. In awe of this beautiful little girl.
She is so bright and so is her future. Welcome back to the world, my sunshine. Welcome back.
We are in the middle of the "transition" from Early Intervention to preschool. There is alot of jargon that I will spare you with, but basically the state intervention services stop and the state school system takes over. All of this is federally mandated. So when I say "state" it really is state and federal...but that's really beside the point.
Because of that transition, the school system requires a renewal of all the prior assessments. That means the EI team comes out again with their big bag of toys, along with speech or OT or PT...and they do the same testing that they initially did on your child to see where they are. On top of that, they ask for assessments from any other sources like the SLP they see on a more frequent basis.
Bottom line. It's alot of testing.
So when the SLP came out to reassess Maddy, something was quite obvious. Maddy.
And after her testing, she looked at me and asked, "so what concerns do you have with her speech now?"
And I looked at her and looked at Maddy and I was baffled. "um...none. I mean, sure, it'd be great if she spoke more often in full sentences but she is quickly getting there and she is well within the age range."
Then I kind of stopped. Wait. I have no concerns? No viable major pressing issues?
I thought, wow. How did we get here?
Shortly after their visit, we had a meeting with Dr. MAL. The main issue was Maddy's sleep and how amazing it had changed in the last 2 weeks. Shorten a nap and reinforce a wake up time and suddenly, she's sleeping a heck of a lot better. Wild.
Dr. MAL paused for a moment and said, "I've never gotten to say this to anyone before, but I think it's time that we start decreasing her ABA hours."
Welcome to uncharted territory.
We were just starting to introduce peer play; finding the peers and the times to do it and now suddenly we can take that ABA time and cut it in half and replace that time with functional peer play. We're going from 20 hours weekly of ABA to 10.
She's doing that well.
She has managed to master in a matter of nearly six months what most "good" ABA students accomplish in two years.
Did you catch that?
2 years worth of learning in 6 months.
Dr. MAL has never had a child phase out of ABA like this. Usually, she told us, they are phasing out ABA because the child is going to be starting school and they have to cut back in order to make the time for kindergarten.
She is academically over the requirements for preschool.
Socially...she is learning. And as usual, Maddy is a quick study. We have hopes of potentially letting her "try out" preschool in May for a few sessions at a time.
Now before I get too ahead of myself...let me say this, we're not out of the woods yet. There are still things that we need to work on.
But I can say this...we're at the edge of the forest. Instead of being fully engulfed in a sea of autism, we are in shallow waters with our eyes focusing on the ever increasing shoreline.
To take a child who less than a year ago, would not look you in the eye, would not respond to her name, would not even acknowledge your presence in the room, would never request anything from you....to suddenly a bright brown eyed girl who walks into the room and says while waving, "Hi guys! I'm Maddy!" and "Mama, come here. Open gate. Me in. please."
The last two weeks we have been experiencing "twin moments" to the point where it is almost daily now. Maddy and her twin, Maelle, playing tiny little games together. Making pretend snow angels on the carpet in Maddy's room, doing puzzles on their play table while sharing the pieces, running from room to room while dancing to their little music boxes, and making funny faces at each other in the window at the hospital. Suddenly, this friendship is erupting. Granted, they still fight. ALOT. But to see them socially playing together and finding the companionship of having a twin sister....brings me to tears.
Last Friday I took them into Rehab therapy without the stroller. Without the backpacks. Just two little 2.5 year olds holding each of my hands. And they were great. They walked with me. They listened to me. They took turns going potty. They washed their hands. They walked right with me in all the little steps they had to do in order to get to their speech therapy. It was a wonderful moment. I finally felt like I had a handle on this. This "twin" thing.
That finally my hopes and dreams for my little girls are beginning to form again. It's not that I ever lost them, they got blurry for awhile. They got lost for awhile. I got lost for awhile.
If you can look at all of that and see how amazing she is. How extraordinary her story is. You cannot deny the presence of God in all of this. I'm sorry but you can't. These are unreal results. Unreal. Everyone is speechless. In awe of this beautiful little girl.
She is so bright and so is her future. Welcome back to the world, my sunshine. Welcome back.
Thursday, January 20, 2011
take that.
So. This is what has happened.
In September, Dr. MAL came up and put on a workshop to train all of us in EIBI or ABA. Basically she instructed us on what Autism is. What behavioral training is. How to do it and what would be expected of us and of Maddy in this whole process. We watched a video, did some training, and away we went. We knew beforehand that most likely our insurance would not cover this workshop. Typical insurance companies were denying coverage of this and even though she has condensed what used to be a 4 day training session into a matter of 8 or 9 hours, they would most likely not cover this.
We really didn't have any choice in the matter. We could do this and potentially recover our daughter from Autism or watch her slide further and further into her own world and lose our window of opportunity. So we did it.
The bill was sent to insurance and they denied it. Stating: No benefits are provided for this psychiatric service.
Dr. MAL wasn't surprised and nor were we. We had called the insurance company several times BEFORE the workshop asking if this was covered and why not and what could we do to get it covered. They wanted to know her diagnosis. Fine. Dr. MAL gave her an autism diagnosis. And still they insisted that ABA was not a covered service.
So Dr. MAL sent in an appeal. And we waited. And we waited.
Meanwhile, our state is in the process of creating a bill to get insurance companies to pay for ABA. It's in rough form and was approved to go before the state legislature but it wasn't recommended...we're going to fight hard for it but we have no lobbyists and autism treatment is vast and at best, only 47% successful. This might be a long time coming but we will fight for all those families out there who are less fortunate than us.
Then yesterday.
There was a pile of "explanation of benefits" letters waiting in the mail for us. We get alot of them since our insurance company and Medicaid are nice enough to cover Maddy's speech and occupational therapy. I assumed that's what it was.
I was wrong.
There it was. Approval of our appeal and our ABA workshop was paid. In full.
Paid.
I think my hands were trembling when I looked at Justin standing next to me. He wasn't really looking at what I was reading until I said, "no way."
"what?"
"they paid it."
"no way," and he ripped the paper out of my hands to see for himself. Both of us trying desperately to get to the second page for the true explanation of why they had approved the appeal.
The explanation was simple : this claim is being adjusted based on the medical information submitted by the provider.
Did you catch that? the medical information. Not the psychiatric information but the medical information.
Oh...do you say, dear insurance company, that autism is a Medical condition and not a psychological condition???????????
We're shocked. It's not just about the money. We're taking this as a small victory in a huge battle. We can't insight change without support. Sure, the bill was large and we've been fundraising to pay for it and all the other costs that come with a child with autism. But suddenly, it's gone. Paid. Done.
Wow.
This means the next time a family is sitting in Dr. MAL's office and hearing the words "autism" and "early intense behavioral intervention" - they don't need to be quite so scared. They don't need to worry about payment but rather the treatment for their child.
I know that I pick on cancer quite a bit. Sorry for that. It's just the most "popular" medical illness. And while not all cancer treatment is paid in full either and there are steep co-pays and bills, but most families with insurance don't have to face covering all the costs out of their pocket. That is the entire point of having insurance, right? So they can maneuver through this scary process and not be staring at the dollar signs the entire time.
We just took a small step towards that in autism and while ABA is NOT the cure, it is the most successful process at recovering children from autism when it is performed correctly. We (as in the autism community) have miles to go as far as finding cause and proper 100% treatment. But every little step counts.
Every little step counts.
In September, Dr. MAL came up and put on a workshop to train all of us in EIBI or ABA. Basically she instructed us on what Autism is. What behavioral training is. How to do it and what would be expected of us and of Maddy in this whole process. We watched a video, did some training, and away we went. We knew beforehand that most likely our insurance would not cover this workshop. Typical insurance companies were denying coverage of this and even though she has condensed what used to be a 4 day training session into a matter of 8 or 9 hours, they would most likely not cover this.
We really didn't have any choice in the matter. We could do this and potentially recover our daughter from Autism or watch her slide further and further into her own world and lose our window of opportunity. So we did it.
The bill was sent to insurance and they denied it. Stating: No benefits are provided for this psychiatric service.
Dr. MAL wasn't surprised and nor were we. We had called the insurance company several times BEFORE the workshop asking if this was covered and why not and what could we do to get it covered. They wanted to know her diagnosis. Fine. Dr. MAL gave her an autism diagnosis. And still they insisted that ABA was not a covered service.
So Dr. MAL sent in an appeal. And we waited. And we waited.
Meanwhile, our state is in the process of creating a bill to get insurance companies to pay for ABA. It's in rough form and was approved to go before the state legislature but it wasn't recommended...we're going to fight hard for it but we have no lobbyists and autism treatment is vast and at best, only 47% successful. This might be a long time coming but we will fight for all those families out there who are less fortunate than us.
Then yesterday.
There was a pile of "explanation of benefits" letters waiting in the mail for us. We get alot of them since our insurance company and Medicaid are nice enough to cover Maddy's speech and occupational therapy. I assumed that's what it was.
I was wrong.
There it was. Approval of our appeal and our ABA workshop was paid. In full.
Paid.
I think my hands were trembling when I looked at Justin standing next to me. He wasn't really looking at what I was reading until I said, "no way."
"what?"
"they paid it."
"no way," and he ripped the paper out of my hands to see for himself. Both of us trying desperately to get to the second page for the true explanation of why they had approved the appeal.
The explanation was simple : this claim is being adjusted based on the medical information submitted by the provider.
Did you catch that? the medical information. Not the psychiatric information but the medical information.
Oh...do you say, dear insurance company, that autism is a Medical condition and not a psychological condition???????????
We're shocked. It's not just about the money. We're taking this as a small victory in a huge battle. We can't insight change without support. Sure, the bill was large and we've been fundraising to pay for it and all the other costs that come with a child with autism. But suddenly, it's gone. Paid. Done.
Wow.
This means the next time a family is sitting in Dr. MAL's office and hearing the words "autism" and "early intense behavioral intervention" - they don't need to be quite so scared. They don't need to worry about payment but rather the treatment for their child.
I know that I pick on cancer quite a bit. Sorry for that. It's just the most "popular" medical illness. And while not all cancer treatment is paid in full either and there are steep co-pays and bills, but most families with insurance don't have to face covering all the costs out of their pocket. That is the entire point of having insurance, right? So they can maneuver through this scary process and not be staring at the dollar signs the entire time.
We just took a small step towards that in autism and while ABA is NOT the cure, it is the most successful process at recovering children from autism when it is performed correctly. We (as in the autism community) have miles to go as far as finding cause and proper 100% treatment. But every little step counts.
Every little step counts.
Sunday, January 9, 2011
into the new year.
Happy New Year, everyone!
I know I'm over a week late on that. Sorry. But I hope you all had a great celebration and the new year is starting out nicely for you all.
We've returned to life as usual after the holidays. Thankfully, even with the light schedule over Christmas and New Year, Maddy didn't really seem affected. She continued on her upward progress. That's a blessing.
We are charting her sleep - on week 3 of charting so far and there appears to be no major pattern that we're seeing. Though, it does seem that she will sleep slightly better when she goes to bed earlier. We did actually have one night that she slept through but at 2.5...MOST kids should be sleeping through. I know that it's "typical" for children with delays and/or autism to have sleeping problems. But I'm not going to leave it at that. Typical or not, I'm going to do my best to find out why. I don't know if we'll get an answer but there has to be some kind of solution. Not only for myself and Justin, but for Maddy. No one can possibly function properly on continuous lack of sleep. We will meet with Dr. MAL on Tuesday of this week to see what she thinks of it plus go over the progress charts from CARD on how she is doing.
I wish I had a before picture to show you the less than stellar organization that was going on. Either way, it's been great to have everything organized and even Maddy was happy to see the shelving. The other money donations will go to the CARD Skills subscription, which will start in February at $250 a month.
I know I'm over a week late on that. Sorry. But I hope you all had a great celebration and the new year is starting out nicely for you all.
We've returned to life as usual after the holidays. Thankfully, even with the light schedule over Christmas and New Year, Maddy didn't really seem affected. She continued on her upward progress. That's a blessing.
We are charting her sleep - on week 3 of charting so far and there appears to be no major pattern that we're seeing. Though, it does seem that she will sleep slightly better when she goes to bed earlier. We did actually have one night that she slept through but at 2.5...MOST kids should be sleeping through. I know that it's "typical" for children with delays and/or autism to have sleeping problems. But I'm not going to leave it at that. Typical or not, I'm going to do my best to find out why. I don't know if we'll get an answer but there has to be some kind of solution. Not only for myself and Justin, but for Maddy. No one can possibly function properly on continuous lack of sleep. We will meet with Dr. MAL on Tuesday of this week to see what she thinks of it plus go over the progress charts from CARD on how she is doing.
We have finally been through all of the donations through the tree donation in our community. It was humbling to have such an outpouring from the community for us and for Maddy. We have been thrilled (the team included) by all the new materials. Maddy is most excited about the paint - what child wouldn't love to paint all day? Some of the money donations went to organizing her room. Isn't it great?
I wish I had a before picture to show you the less than stellar organization that was going on. Either way, it's been great to have everything organized and even Maddy was happy to see the shelving. The other money donations will go to the CARD Skills subscription, which will start in February at $250 a month. The gas cards have been awesome. I think I'm most thrilled about the fact that you swipe the card and it automatically fills to the amount on the card. ha. The funny things that thrill you at this point.
But more importantly, all of this has been a true help. Not only with financial means or physical objects, but just to know that there is a community backing us and all that we are doing to improve her life. It's amazing. I don't hope that any of you ever have to go through what we are going through but if you do, I hope you will feel the amount of love that we have. To feel supported in the fight for your daughter's life.
You've all seen the news, I won't go in depth about findings that Dr. Wakefield falsified his findings in the link between vaccines and autism. I've never supported that belief in Maddy's case. I can remember (of what little I do remember of the twins' infancy) the subtle signs when Maddy was an infant that something seemed to be a bit different with her.
We are about 2 weeks from a big change in the team, Miss Melissa - aka the Organizer - will be starting her maternity leave. I wish her all the best and cannot wait to meet little Isaiah! Though I would be lying if I didn't say how nervous I am to be without her for a few weeks. I have great friends and great help and everyone of them has their special task they do for me and when I lose one, I'm lost! So I'm doing my best to mentally prepare myself for losing my right arm again for awhile (haha). And when I get her back, Miss Laurel will be off on her maternity leave (another baby boy that I can't wait to meet!) but I'll get my right arm back in time to lose my left. (And it just occurred to me that Laurel doesn't have a nickname....better work on that. Almost everyone else does...)
But there is prospect of newbies and that's exciting. (Interested in being a newbie? - email me: maddysvoice@yahoo.com or send me a comment on Facebook under Maddy's Voice)
I'm off for now. Just wanted to update everyone about the new happenings. Thank you for all the prayers and support! Love you all.
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