It's April! So welcome to Autism Awareness Month!
Also, we are a mere 18 days away from our 2nd Annual Puzzled Over Autism Event. Who is ready to spend 12 hours puzzling with us???
On the last Saturday of April, we hold a 12 hour puzzle-a-thon in order to raise money and awareness for those with Autism.
This year we will be raising money for Maddy's summer speech program, which will have high co-pay costs.
Because Maddy has done so extraordinary, we are now taking applications for other families to be supported with our puzzle - a - thon. This years' "Friends of Maddy" include Chris Kincaid and Maggie Luibrand.
Chris Kincaid is a teenager who has Asperger's. I have had the privledge of knowing Chris for almost 2 years now and he is such an awesome guy! Skater and hip hopper...love him! He is in need of some educational tools to help get him through high school. He is mainstreamed and honestly he does amazing! But there are always areas that could be improved and we hope to help him.
This year we are branching out to help another girl in our community and while she does not have autism, she suffered a brain injury at birth. Maggie Luibrand has done some amazing things in her mere 2 years of life and we hope to continue to encourage her and her family to the best of our abilities. We recognize that families with ANY kind of special needs children need our help and we're asking for your help in us helping them!
So how can you help? On the sidebar, there is a link to our paypal page if you would like to sponsor Maddy in the puzzle a thon. Basically we ask for a flat rate to contribute and encourage Maddy in her puzzling. It can be any dollar amount. Just be sure to comment that it is for Maddy's Puzzled Over Autism sponsor.
Then come join us, if you are local, on April 28th from 10am to 10pm as we puzzle away! There will also be chili served from 11am to 7pm if you aren't a puzzler but would still like to join in the fun and eat some grub.
The flyer is coming soon and I will post it then. Thank you all for your continued support. Without you guys, we don't know where we would be!!! We can only hope to carry on that hope to many other families in our community!!
Much love.
If you know of a family that could use our support for next year, send us an email at maddysvoice@yahoo.com for an application for that family to be included as "Friends of Maddy".
Tuesday, April 10, 2012
Monday, February 20, 2012
happily mistaken.
Today I sat on the arm of my couch and looked out the window. (I know and yes, my mother did teach me that I shouldn't sit on the arm of furniture, but I still do it. I am teaching my kids horrible habits as I have never once told them not to do it. I let them jump on it too. shock and awe.) I was staring out there waiting to watch Justin drive by, off to his conference. The skies were gray and the clouds were telling me that it would be snowing soon.
I was feeling melancholy at the departure of my husband. After ten years of being together as a couple and married for eight of those years, he is my constant. I do feel a bit lost and a bit not all together with him gone. My best friend through it all. I love him more than words.
I heard a small creature clamber up beside me and from the corner of my eye, I saw a pink shirt and sandy hair. I heard, "what cha doing, Mommy?"
I kept staring out the window and said, "I'm just watching for Daddy to drive across. He's at Dennis' getting ready to go."
And as I turned to look at who I thought was my Eva, I found Maddy. I shook my head a little and smiled. "I thought you were Eva."
She shook her head, "No, I'm Maddy, Mommy."
"I know that, silly. I know. You just sounded like Eva."
To which, she just shrugged and pretended to fall off the arm of the couch into the game of Save me, Mommy. And I was left a little dumbfounded.
First let me address the obvious...Eva has sandy blond hair and Maddy's is kinda sandy brown...so how could I mistake blonde from brown? Well, Maddy has natural blond highlights on the top of her head and close around her face. Eva's hair also is how mine used to be where it would be almost bleach blonde in the summer from the sun and then sandy in the winter...so in a quick corner glance, it's easy to do.
She spoke like Eva. Eva, the first born, has never sounded like a baby. She started talking around 1 year and she always sounded like a grownup. There wasn't any baby speak or toddler speak...she just spoke. Maddy has toddler speak. Where they leave unimportant words out...or they phrase them differently: "what are you doing" in toddler speech is "what you doing".
And I, thinking that I am talking to Eva, responded in a way that I would to her. I told her exactly what I was doing...where if I knew it had been Maddy, I would have said, "oh just looking out the window to see when Daddy comes by"
It's a funny thing. How differently you talk to each of your kids. And I never really realized it until that moment.
But more importantly, I took that one quiet moment to realize that even when I try to relax and not worry about Maddy. When I try not look for any kinds of regression, that I really don't. Until I get a moment like that. An innocent moment that any parent has with their kids and mistaking them for someone else. But the fact that I could mistake Maddy for Eva was beautiful.
Not that Maddy needs to strive to be Eva.
Maddy will always be Maddy...with her quirks. And her love. And her literal words.
Eva will always be Eva...with her drama. And her love. And her big sister teaching.
Maelle will always be Maelle...with her temper. And her love. And her mothering.
Maddy has been sick alot this year. Any kid who is sick all the time is not their usual selves. They can be whiney, or clingy, or crabby, or distant. Maddy is absorbed and has a hard time focusing her attention when she is sick. It's normal...her Daddy is the same way when he is sick. He goes off to his own planet of sickness. It's also frustrating and worrisome for me. Because I have a huge part of my brain that knows she is fine. Then there is that other part of my brain...the autism mom brain...that is ticking away concerns and observations. And no matter how hard I try, Autism Mom Brain is really hard to shut up when Maddy acts distant.
She will be having her adenoids removed next week and tubes put in her ears. Yuck for surgery but having done part of this procedure on Maelle and seeing the major improvements, I know it is worth it.
Also worth it was our experience in the doctor's office when Maddy willingly let the good doctor look in her ears and nose. Then let him spray in her nose and shove a snake like light up her nose with minimal complaint. She was bright eyed, alert, and friendly....the Maddy that we all know and love.
Explaining to him her journey and see the shock and amazement on his face. The slow smile that crept across his face as he understood the gravity of Maddy. To hear him say what a miraculous child she is....
...that quiets Autism Mom Brain. And it makes me ever so thankful for the love and the journey that is Maddy.
I was feeling melancholy at the departure of my husband. After ten years of being together as a couple and married for eight of those years, he is my constant. I do feel a bit lost and a bit not all together with him gone. My best friend through it all. I love him more than words.
I heard a small creature clamber up beside me and from the corner of my eye, I saw a pink shirt and sandy hair. I heard, "what cha doing, Mommy?"
I kept staring out the window and said, "I'm just watching for Daddy to drive across. He's at Dennis' getting ready to go."
And as I turned to look at who I thought was my Eva, I found Maddy. I shook my head a little and smiled. "I thought you were Eva."
She shook her head, "No, I'm Maddy, Mommy."
"I know that, silly. I know. You just sounded like Eva."
To which, she just shrugged and pretended to fall off the arm of the couch into the game of Save me, Mommy. And I was left a little dumbfounded.
First let me address the obvious...Eva has sandy blond hair and Maddy's is kinda sandy brown...so how could I mistake blonde from brown? Well, Maddy has natural blond highlights on the top of her head and close around her face. Eva's hair also is how mine used to be where it would be almost bleach blonde in the summer from the sun and then sandy in the winter...so in a quick corner glance, it's easy to do.
She spoke like Eva. Eva, the first born, has never sounded like a baby. She started talking around 1 year and she always sounded like a grownup. There wasn't any baby speak or toddler speak...she just spoke. Maddy has toddler speak. Where they leave unimportant words out...or they phrase them differently: "what are you doing" in toddler speech is "what you doing".
And I, thinking that I am talking to Eva, responded in a way that I would to her. I told her exactly what I was doing...where if I knew it had been Maddy, I would have said, "oh just looking out the window to see when Daddy comes by"
It's a funny thing. How differently you talk to each of your kids. And I never really realized it until that moment.
But more importantly, I took that one quiet moment to realize that even when I try to relax and not worry about Maddy. When I try not look for any kinds of regression, that I really don't. Until I get a moment like that. An innocent moment that any parent has with their kids and mistaking them for someone else. But the fact that I could mistake Maddy for Eva was beautiful.
Not that Maddy needs to strive to be Eva.
Maddy will always be Maddy...with her quirks. And her love. And her literal words.
Eva will always be Eva...with her drama. And her love. And her big sister teaching.
Maelle will always be Maelle...with her temper. And her love. And her mothering.
Maddy has been sick alot this year. Any kid who is sick all the time is not their usual selves. They can be whiney, or clingy, or crabby, or distant. Maddy is absorbed and has a hard time focusing her attention when she is sick. It's normal...her Daddy is the same way when he is sick. He goes off to his own planet of sickness. It's also frustrating and worrisome for me. Because I have a huge part of my brain that knows she is fine. Then there is that other part of my brain...the autism mom brain...that is ticking away concerns and observations. And no matter how hard I try, Autism Mom Brain is really hard to shut up when Maddy acts distant.
She will be having her adenoids removed next week and tubes put in her ears. Yuck for surgery but having done part of this procedure on Maelle and seeing the major improvements, I know it is worth it.
Also worth it was our experience in the doctor's office when Maddy willingly let the good doctor look in her ears and nose. Then let him spray in her nose and shove a snake like light up her nose with minimal complaint. She was bright eyed, alert, and friendly....the Maddy that we all know and love.
Explaining to him her journey and see the shock and amazement on his face. The slow smile that crept across his face as he understood the gravity of Maddy. To hear him say what a miraculous child she is....
...that quiets Autism Mom Brain. And it makes me ever so thankful for the love and the journey that is Maddy.
Thursday, January 26, 2012
new definitions.
I'm sure some of you have seen the hype and controversy surrounding the latest changes in the DSM about autism. If you haven't, I suggest you google the words "autism" and "dsm 5" and you will be able to peruse all the articles and opinions in the matter.
Basically, the criteria for meeting the autism diagnosis is getting more strict.
Some people feel this is a necessary change to stop this very media friendly view of autism becoming an epidemic.
Some feel this is outright wrong and will deny thousands of innocent kids the services that they need.
Where do we sit on this issue?
More strict or not, Maddy doesn't meet any criteria for autism. Under the more broad terms and the more narrow ones.
Yet, in that, Maddy DID have autism at one time and, believe it or not, she DID meet the very strict "new" criteria that will be defined in the newest DSM.
So while these changes don't affect us, they affect thousands...if not millions...that's the truth of the matter. And I can kinda see both sides of the issue. I can kinda understand why the scientists and doctors feel they need to clamp down on the criteria because yes there is misdiagnosing going on.
Notice I used the word "kinda."
The problem with raising awareness to an illness is that while it helps get more people the help they need, it increases the number of people diagnosed, and makes everyone more aware of how "real" the problem is.
What you don't see is when new technology develops and scientists and doctors are able to pinpoint diabetes easier or heart disease easier or even cancer...they don't go and change the definition of what any of those illnesses are to avoid telling the public how "real" the numbers are for people having those illnesses. You see excitement in the medical community at the better prevention or early diagnosis possibilities.
Am I frustrated? yes.
Because any child, whether they are have a very severe case of autism or a very mild or "high functioning" case of it, deserves treatment. All of them. Every single one. Adults, teens, kids...all deserve care.
And when you take something and make it "harder to get" - all those people lose. Lose services. Lose understanding. Lose compassion. They just lose.
Did I want Maddy labeled? No. I really didn't. I didn't want Maddy to have ASD. I didn't want her to have the Autism label if she could potentially recover. What I learned was to not shy away from that label. It's nothing. It's just a word. Autism. And now, her official diagnosis being "autistic disorder REMISSION" - i wonder how the DSM people feel about that one.
Let's be honest. I really don't have to say ANYTHING about insurance companies because they didn't pay for crap BEFORE with the broad autism definition, that surely isn't gonna change now. Since, apparently, autism is a psychological problem and therefore not a medical one. (whatever.) And whatever people did get some money from them, they sure won't get it now.
The public opinion will change. It will. Because the adversity I hear now is gross. When they find out your child had autism, they assume that it was mild and say it to your face. "Oh it must have been just a mild case of it" as if it were nothing. It doesn't make it any easier. It doesn't bring back the years of her life when she was NOT herself. And by the way, she did NOT have a mild case of it. She had a very moderately severe case. And you just belittled everything we did. And you just belittled all the people that have a mild case of autism and are struggling to adjust to life. The ones you make fun of or think are weird...they have mild autism and you're not helping them. You are mocking them.
Finally let me just say this. If the DSM people want to make autism "harder to get" - though I'm sure they say it's just a more accurate - will they change how hard it is to have cancer? (sorry cancer folks, I really am NOT picking on you) Will they make criteria for that...if your tumor is not x amount of millimeters or centimeters or inches wide then technically you don't have cancer. You still need chemo or radiation but it's not large enough to be considered cancer. You will not get your treatment paid for by insurance companies because your case is mild. So foot the bill, do your treatment, fight your fight...but don't complain because you really don't have cancer. You just have a mild sign of it.
Ouch? yeah. I thought so.
Basically, the criteria for meeting the autism diagnosis is getting more strict.
Some people feel this is a necessary change to stop this very media friendly view of autism becoming an epidemic.
Some feel this is outright wrong and will deny thousands of innocent kids the services that they need.
Where do we sit on this issue?
More strict or not, Maddy doesn't meet any criteria for autism. Under the more broad terms and the more narrow ones.
Yet, in that, Maddy DID have autism at one time and, believe it or not, she DID meet the very strict "new" criteria that will be defined in the newest DSM.
So while these changes don't affect us, they affect thousands...if not millions...that's the truth of the matter. And I can kinda see both sides of the issue. I can kinda understand why the scientists and doctors feel they need to clamp down on the criteria because yes there is misdiagnosing going on.
Notice I used the word "kinda."
The problem with raising awareness to an illness is that while it helps get more people the help they need, it increases the number of people diagnosed, and makes everyone more aware of how "real" the problem is.
What you don't see is when new technology develops and scientists and doctors are able to pinpoint diabetes easier or heart disease easier or even cancer...they don't go and change the definition of what any of those illnesses are to avoid telling the public how "real" the numbers are for people having those illnesses. You see excitement in the medical community at the better prevention or early diagnosis possibilities.
Am I frustrated? yes.
Because any child, whether they are have a very severe case of autism or a very mild or "high functioning" case of it, deserves treatment. All of them. Every single one. Adults, teens, kids...all deserve care.
And when you take something and make it "harder to get" - all those people lose. Lose services. Lose understanding. Lose compassion. They just lose.
Did I want Maddy labeled? No. I really didn't. I didn't want Maddy to have ASD. I didn't want her to have the Autism label if she could potentially recover. What I learned was to not shy away from that label. It's nothing. It's just a word. Autism. And now, her official diagnosis being "autistic disorder REMISSION" - i wonder how the DSM people feel about that one.
Let's be honest. I really don't have to say ANYTHING about insurance companies because they didn't pay for crap BEFORE with the broad autism definition, that surely isn't gonna change now. Since, apparently, autism is a psychological problem and therefore not a medical one. (whatever.) And whatever people did get some money from them, they sure won't get it now.
The public opinion will change. It will. Because the adversity I hear now is gross. When they find out your child had autism, they assume that it was mild and say it to your face. "Oh it must have been just a mild case of it" as if it were nothing. It doesn't make it any easier. It doesn't bring back the years of her life when she was NOT herself. And by the way, she did NOT have a mild case of it. She had a very moderately severe case. And you just belittled everything we did. And you just belittled all the people that have a mild case of autism and are struggling to adjust to life. The ones you make fun of or think are weird...they have mild autism and you're not helping them. You are mocking them.
Finally let me just say this. If the DSM people want to make autism "harder to get" - though I'm sure they say it's just a more accurate - will they change how hard it is to have cancer? (sorry cancer folks, I really am NOT picking on you) Will they make criteria for that...if your tumor is not x amount of millimeters or centimeters or inches wide then technically you don't have cancer. You still need chemo or radiation but it's not large enough to be considered cancer. You will not get your treatment paid for by insurance companies because your case is mild. So foot the bill, do your treatment, fight your fight...but don't complain because you really don't have cancer. You just have a mild sign of it.
Ouch? yeah. I thought so.
Tuesday, January 24, 2012
happy new year.....
So sorry to miss the New Year! I will be writing a new entry tomorrow (too tired tonight)...stay tuned. Hope you all had a great christmas and new year! (and most of January too!
Thursday, December 15, 2011
...silence...
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.
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.
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.
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