Monday, August 30, 2010
Sunday, August 29, 2010
the waters edge.
We took the girls to the beach for the first time last week. Correction, we took ALL the girls to the beach for the first time. Both Eva and Maelle had already been to there but I we hadn't been brave enough to take all three girls at once before now. The idea of the twins around a body of water with only "zone defense" parenting was never appealing to me. My brain works against me, most of the time.
But Justin got it in his head that we could do this and then invited our friends and their kids over for a day at the beach and on the tiny little sailboat that we own. Being that it is late August, I figured now was the time. I couldn't really avoid it much longer - I have seen snow in September here, after all.
So off we went. Life jackets and Mommy's paranoia...to the beach!
Side note: our "beach" is but a small one on a lake that would be considered small to most people...even most landlocked folks like us, consider this a small lake. Given that at one time, Justin and I lived on the eastern shores of Lake Michigan, yes, this is a tiny dot in the lake chart. BUT it was a body of water...a large body of water compared to my tiny 28 pound Maddy.
Eva and Maelle were very much at home at the beach since they had been there before. Maddy was quiet but excited. She walked right down (with her monkey backpack and me close at her side) to the edge of the water and watched the tiny waves for a few seconds and then wanted to continue in. She didn't make any sounds at first...just quiet observance.
She loves the water to begin with so it was no shock that she just wanted to walk right in the lake and keep going. I corralled her back to the beach to switch out her monkey backpack for her life vest. She played the morning away on the beach and in the water with me by her side. She learned the word "castle" and on her own, she would shout "SWIM! SWIM!" when she was in the water. When she saw Daddy and Bill on the boat, she wanted to literally walk through the water to it.
She ate minimal sand, so that's a plus. If you don't know, Maddy still very much likes to put everything in her mouth to taste it. She seems to love dirt, sand, and chalk the best. Gross, I know. There is a syndrome called pica that involves eating inedible things. It does follow some kids with autism but at 2, I think that a pica diagnosis is a bit inappropriate. She is aged developmentally 15-18 months (with peaks at 24 months) at this point...and lots of 15 to 18 month olds still eat everything.
She seemed to like the sailboat. Mommy sure didn't. As we shoved off on the tiny sail boat on the tiny lake...I looked at my kids...4 and 2 and 2. Okay, none of them can swim. I doubt that even my 4 year old could tred water to keep her head above. And there are 2 adults. I don't like those odds. YES, they all had life jackets on but still. My anxiety was at an all time high. I had visions of Maddy climbing out of the boat, Justin diving in after her, thus knocking the boat off kilter so it dumps the rest of us out. I would be in the water trying to keep Maelle and Eva afloat along with myself??? Then I just told my brain to shut up!
We did well until Maddy did start to climb out of the boat and I gave Justin that look that says GET US OUT OF HERE. Only we are on a sailboat. And suddenly the wind died. Oh God. Okay. I'm supposed to trust Him. So I stopped panicking and became Distracting Mommy.
"Does anyone see a bird? Let's look for a bird," as I overly gestured.
Looking in the sky there was nothing. Come on....there has to be a bird. I need a bird. I need some kind of distraction while we wait for the wind to come up again. Then suddenly...in the middle of the lake there was a hummingbird. A hummingbird? In the middle of the lake? Yep.
When we moved here...in the midst of my 2nd bout of postpartum depression when the twins were infants, I often would look out the window in hopes of seeing something uplifting and there was always that "same" green hummingbird to greet me. I don't know the life span of hummingbird (wiki says 3 to 5 years) but the symbolism was outstanding. Whenever I seemed to need some kind of uplifting assurance...there was a hummingbird. And there she (or he?) was again. I don't know if hummingbirds usually fly across the lake...maybe they do...but this one was so close to us, literally we could have reached out and touched her.
The wind picked up and off we went back to shore. Safe. Sound. Land.
Maddy and I walked the beach some more as I soaked up her tiny innocence. She was quiet and I wondered what she was thinking. If only I could crawl inside that little brain of hers and see what was working in there. If I could just go in and see what she sees. Hear what she hears. And KNOW that she was ok. To KNOW that someday we would be walking this beach and she would be running and laughing and telling me about every new thing she found. To bring me buckets of sand with her sisters and say "look Mommy! Look what we made!"
I don't want to put a damper on a great day. It was a good day. It was a stressful day for me but for every other player, a great day. That's what I wanted it to be for them. Just a fun day at the beach. With no care in their minds. Just fun. Happiness.
The thing about becoming a mom is that you can lose that innocent fun. You can wrap yourself very tightly in a web of worry. A web of unknowns. There are no crystal balls. We don't hold the future. We are intrusted with these tiny beings to protect, nurture, and love. (I mean dads too...I'm not trying to exclude you men)
On Friday we had our first therapy day "in the city". It was a good day but a hard day. The twins had a good time. Maddy did the best with the new surrounding. Despite her autism...she adapts to change just fine. She doesn't like the transitional change from activity to activity but as far as daily schedule goes...she is VERY adaptable. She loves to go places and see people. LOVES it. (so non autism there) Maelle is shy. She didn't like it much. But she did well...she went with the SLP (speech and language pathologist) and I sat in the waiting room taking it all in.
There were all sorts of children there. Mentally handicapped. Downs. OCD. Some appearing to be spectrum kids. Two girls struck me...while they were 8 or 9 from their outside features...they seemed to be functioning around 2 or possibly 3. I don't know if those girls were spectrum kids or not. It's not like picking out veggies...spectrum kids are as unique as their fingerprints. Either way, it was eerie to watch them. Not that they were eerie themselves but just the gravity of everything. The weary parents were talking to the therapists about pool therapy. The parents looked exhausted. They looked how I felt.
I looked at my borrowed People magazine trying not to be that annoying onlooker gawking at them. I wanted to cry. I imagine that was how parents of newly diagnosed cancer kids felt when they toured the cancer unit of Mayo clinic. This shock and awe type feeling. Not that those amazing kids were scary...just the situation was. The reality was. Wondering if I was going to be them in 6 years. And some new mom will be sitting in my seat trying not to burst out in tears.
I don't know. That's just it. I don't know. And I kept looking at these new therapists like "are you really good enough for my Maddy? Are you the most qualified person I should be working with? Is OT really going to help or will it be a waste of my time? Speech play therapy? What is that? What are you doing that I'm not already doing at home? Don't you understand???? Doesn't anyone understand this? She is wandering farther and farther into the lake and pretty soon I won't be able to reach her...she's on the beach with her toes in right now. We gotta turn her around. Turn her from those dark waters. wrap her in our loving warm arms and run. RUN. Thinking...that was so close. We almost lost her!"
Autism is our modern age epidemic. It is. 1 in 91 kids have it. In some form. And while it is so common. The treatment is not. I asked the OT therapist (I don't even know what her name is..how bad is that?) what exactly she would be doing with Maddy and she gave me some vague response about working out her sensory issues. I nodded but thought "huh?" I should have said...no...what are you DOING. Like the actual activity. And maybe that's what will come out of my mouth on Friday when we go again. I'm not saying that OT is worthless...i just want to know what the heck it is. And what are the goals. Fine motor skills. Okay I get that...she does have problems with her hands....sometimes it seems like she doesn't know what to do with them. So how do we fix that? Tell me HOW.
I think the problem is that we went from no one hearing of autism to now everyone hears it. The problem is that most of us still feel like we are alone in this battle (I mean as parents, I have a wonderful support group of friends that are with me through this) - if it is so common, where is everyone else? Ashamed? In denial? Embarrassed? Where are you?
I believe that autism is a medical disorder. Not a mental disorder. For whatever reason some wires get crossed in the brain and the child just stops developing or regresses. Maddy hasn't regressed...she just stopped at 15 months. Just stopped. So there is nothing embarrassing about autism. Is cancer embarrassing? I don't think there should be any differential. Instead of having a brain tumor, she has a brain connection problem.
I had a great friend (actually ex boyfriend) in high school who had brain cancer. He was an amazing person. He was exceptionally smart. He called his tumor Betty. He had great humor about it...he knew he wasn't going to make it but he was gonna LIVE. He was going to do everything he could to fight Betty (including two brain surgeries) but he would not hide it. He was not ashamed of it. He knew it was awkward for people to except his boldness about his cancer but he didn't care. It was part of his life. It did not define him...just a part of him.
If he were living, he would tell me to march forward to find Maddy. To recover her the best we could. To never let the autism win. To never be ashamed of it. To never fear it either. Autism does not define Maddy. It is a part of her life...whether it remains to be a part of her life for her entire life remains to be seen. I will not give up on her. I will not hide her either. She is an amazing sunshine of life. Radiant and beautiful.
Autism is dark waters. I feel like I'm trudging through a thick cloud of therapies and remedies and experts...trying to decipher what is best for Maddy. Thank God for her light. She is so bright.
But Justin got it in his head that we could do this and then invited our friends and their kids over for a day at the beach and on the tiny little sailboat that we own. Being that it is late August, I figured now was the time. I couldn't really avoid it much longer - I have seen snow in September here, after all.
So off we went. Life jackets and Mommy's paranoia...to the beach!
Side note: our "beach" is but a small one on a lake that would be considered small to most people...even most landlocked folks like us, consider this a small lake. Given that at one time, Justin and I lived on the eastern shores of Lake Michigan, yes, this is a tiny dot in the lake chart. BUT it was a body of water...a large body of water compared to my tiny 28 pound Maddy.
Eva and Maelle were very much at home at the beach since they had been there before. Maddy was quiet but excited. She walked right down (with her monkey backpack and me close at her side) to the edge of the water and watched the tiny waves for a few seconds and then wanted to continue in. She didn't make any sounds at first...just quiet observance.
She loves the water to begin with so it was no shock that she just wanted to walk right in the lake and keep going. I corralled her back to the beach to switch out her monkey backpack for her life vest. She played the morning away on the beach and in the water with me by her side. She learned the word "castle" and on her own, she would shout "SWIM! SWIM!" when she was in the water. When she saw Daddy and Bill on the boat, she wanted to literally walk through the water to it.
She ate minimal sand, so that's a plus. If you don't know, Maddy still very much likes to put everything in her mouth to taste it. She seems to love dirt, sand, and chalk the best. Gross, I know. There is a syndrome called pica that involves eating inedible things. It does follow some kids with autism but at 2, I think that a pica diagnosis is a bit inappropriate. She is aged developmentally 15-18 months (with peaks at 24 months) at this point...and lots of 15 to 18 month olds still eat everything.
She seemed to like the sailboat. Mommy sure didn't. As we shoved off on the tiny sail boat on the tiny lake...I looked at my kids...4 and 2 and 2. Okay, none of them can swim. I doubt that even my 4 year old could tred water to keep her head above. And there are 2 adults. I don't like those odds. YES, they all had life jackets on but still. My anxiety was at an all time high. I had visions of Maddy climbing out of the boat, Justin diving in after her, thus knocking the boat off kilter so it dumps the rest of us out. I would be in the water trying to keep Maelle and Eva afloat along with myself??? Then I just told my brain to shut up!
We did well until Maddy did start to climb out of the boat and I gave Justin that look that says GET US OUT OF HERE. Only we are on a sailboat. And suddenly the wind died. Oh God. Okay. I'm supposed to trust Him. So I stopped panicking and became Distracting Mommy.
"Does anyone see a bird? Let's look for a bird," as I overly gestured.
Looking in the sky there was nothing. Come on....there has to be a bird. I need a bird. I need some kind of distraction while we wait for the wind to come up again. Then suddenly...in the middle of the lake there was a hummingbird. A hummingbird? In the middle of the lake? Yep.
When we moved here...in the midst of my 2nd bout of postpartum depression when the twins were infants, I often would look out the window in hopes of seeing something uplifting and there was always that "same" green hummingbird to greet me. I don't know the life span of hummingbird (wiki says 3 to 5 years) but the symbolism was outstanding. Whenever I seemed to need some kind of uplifting assurance...there was a hummingbird. And there she (or he?) was again. I don't know if hummingbirds usually fly across the lake...maybe they do...but this one was so close to us, literally we could have reached out and touched her.
The wind picked up and off we went back to shore. Safe. Sound. Land.
Maddy and I walked the beach some more as I soaked up her tiny innocence. She was quiet and I wondered what she was thinking. If only I could crawl inside that little brain of hers and see what was working in there. If I could just go in and see what she sees. Hear what she hears. And KNOW that she was ok. To KNOW that someday we would be walking this beach and she would be running and laughing and telling me about every new thing she found. To bring me buckets of sand with her sisters and say "look Mommy! Look what we made!"
I don't want to put a damper on a great day. It was a good day. It was a stressful day for me but for every other player, a great day. That's what I wanted it to be for them. Just a fun day at the beach. With no care in their minds. Just fun. Happiness.
The thing about becoming a mom is that you can lose that innocent fun. You can wrap yourself very tightly in a web of worry. A web of unknowns. There are no crystal balls. We don't hold the future. We are intrusted with these tiny beings to protect, nurture, and love. (I mean dads too...I'm not trying to exclude you men)
On Friday we had our first therapy day "in the city". It was a good day but a hard day. The twins had a good time. Maddy did the best with the new surrounding. Despite her autism...she adapts to change just fine. She doesn't like the transitional change from activity to activity but as far as daily schedule goes...she is VERY adaptable. She loves to go places and see people. LOVES it. (so non autism there) Maelle is shy. She didn't like it much. But she did well...she went with the SLP (speech and language pathologist) and I sat in the waiting room taking it all in.
There were all sorts of children there. Mentally handicapped. Downs. OCD. Some appearing to be spectrum kids. Two girls struck me...while they were 8 or 9 from their outside features...they seemed to be functioning around 2 or possibly 3. I don't know if those girls were spectrum kids or not. It's not like picking out veggies...spectrum kids are as unique as their fingerprints. Either way, it was eerie to watch them. Not that they were eerie themselves but just the gravity of everything. The weary parents were talking to the therapists about pool therapy. The parents looked exhausted. They looked how I felt.
I looked at my borrowed People magazine trying not to be that annoying onlooker gawking at them. I wanted to cry. I imagine that was how parents of newly diagnosed cancer kids felt when they toured the cancer unit of Mayo clinic. This shock and awe type feeling. Not that those amazing kids were scary...just the situation was. The reality was. Wondering if I was going to be them in 6 years. And some new mom will be sitting in my seat trying not to burst out in tears.
I don't know. That's just it. I don't know. And I kept looking at these new therapists like "are you really good enough for my Maddy? Are you the most qualified person I should be working with? Is OT really going to help or will it be a waste of my time? Speech play therapy? What is that? What are you doing that I'm not already doing at home? Don't you understand???? Doesn't anyone understand this? She is wandering farther and farther into the lake and pretty soon I won't be able to reach her...she's on the beach with her toes in right now. We gotta turn her around. Turn her from those dark waters. wrap her in our loving warm arms and run. RUN. Thinking...that was so close. We almost lost her!"
Autism is our modern age epidemic. It is. 1 in 91 kids have it. In some form. And while it is so common. The treatment is not. I asked the OT therapist (I don't even know what her name is..how bad is that?) what exactly she would be doing with Maddy and she gave me some vague response about working out her sensory issues. I nodded but thought "huh?" I should have said...no...what are you DOING. Like the actual activity. And maybe that's what will come out of my mouth on Friday when we go again. I'm not saying that OT is worthless...i just want to know what the heck it is. And what are the goals. Fine motor skills. Okay I get that...she does have problems with her hands....sometimes it seems like she doesn't know what to do with them. So how do we fix that? Tell me HOW.
I think the problem is that we went from no one hearing of autism to now everyone hears it. The problem is that most of us still feel like we are alone in this battle (I mean as parents, I have a wonderful support group of friends that are with me through this) - if it is so common, where is everyone else? Ashamed? In denial? Embarrassed? Where are you?
I believe that autism is a medical disorder. Not a mental disorder. For whatever reason some wires get crossed in the brain and the child just stops developing or regresses. Maddy hasn't regressed...she just stopped at 15 months. Just stopped. So there is nothing embarrassing about autism. Is cancer embarrassing? I don't think there should be any differential. Instead of having a brain tumor, she has a brain connection problem.
I had a great friend (actually ex boyfriend) in high school who had brain cancer. He was an amazing person. He was exceptionally smart. He called his tumor Betty. He had great humor about it...he knew he wasn't going to make it but he was gonna LIVE. He was going to do everything he could to fight Betty (including two brain surgeries) but he would not hide it. He was not ashamed of it. He knew it was awkward for people to except his boldness about his cancer but he didn't care. It was part of his life. It did not define him...just a part of him.
If he were living, he would tell me to march forward to find Maddy. To recover her the best we could. To never let the autism win. To never be ashamed of it. To never fear it either. Autism does not define Maddy. It is a part of her life...whether it remains to be a part of her life for her entire life remains to be seen. I will not give up on her. I will not hide her either. She is an amazing sunshine of life. Radiant and beautiful.
Autism is dark waters. I feel like I'm trudging through a thick cloud of therapies and remedies and experts...trying to decipher what is best for Maddy. Thank God for her light. She is so bright.
Tuesday, August 24, 2010
beginning scheduling.
So we finally heard back from our hospital and our Speech and Occupational Therapy is now scheduled! I could not be more thrilled about this! FINALLY! I feel like I made into the cool group or something of that caliber to finally have a set schedule of Maddy's non home based therapies.
There was a lot of scheduling to be done in order to fit Maddy's therapies back to back and to fit Maelle in there once a week for speech as well...and at the same time so we are only there for an hour...yes, 3 hours of driving for an hour of therapy....crazy right? But we're doing it. That's all there is to it.
Monday - Maddy will be doing her own ST and OT on Monday mornings and after thinking about it, Justin decided to take a half day on Monday and take Maddy to therapy on Monday mornings. I am willing to do it myself...even if it does mean leaving at 7 am....but I was very upset about having to give up my Mommy Bible study on Mondays. I know...in the grand scheme of everything, it may seem minor...having to stop going to bible study. Yet, I was heartbroken about it. I love those ladies and I love having that time to focus on ME and my relationship with my creator. And I can't be the sole therapy lady...it seems fair that one of us goes once a week and I'm not going twice a week all the time. It also means that most likely Maddy will nap on the way home and I can do her EIBI therapy in the afternoon while Maelle naps. Eva....I'm thinking about maybe she could take that time to spend with her great grandma, but I will need to check with her for that. I'm sure when Maelle gives up her naps in the afternoon, this will change...but for now that seems to work.
Tuesday/Thursday - Maddy will have her EIBI therapy from 9 to 11. I will need either a therapist or childcare those days...
Wednesday - We have Early intervention at our house at 10:30 so it looks like maybe we'll just have an hour of EIBI in the morning before Lori comes and possibly doing something in the afternoon after nap time...I'm not sure yet on Wednesdays. Possibly doing a 2 hour block after 3pm??? I would need a therapist or childcare from 3-5 then.
Friday - Both girls have speech and Maddy has OT - we will be gone roughly 9:30 to 1:30....the girls will nap in the car those days, I would imagine. So I would need a therapist/childcare from 2 to 4. And possibly someone to take Eva those mornings...she can come with, but you can imagine how boring of a trip that would be weekly for her!
The weekends, we will handle on our own....unless there are some of you who want to help and can only do her therapy on a weekend...we'll take ya then. I know for many the weekend is family time so I understand.
So email me....facebook me...comment...let me know if you can help or if there is another time that you can help or what not. I know alot of you have offered to help me...here is the childcare/therapy section of our support group. I will put up a weekly calendar once I have things more concrete. The EIBI part will obviously not start until after the workshop on the 13th. BUT the ST/OT part of therapy starts this Friday... The Monday speech will not start until Sept. 20.
To clarify...I need potential childcare for Eva on Fridays now until mid-September when everything else starts up too. Also, I need childcare for Monday Sept. 13. - ALL DAY for the workshop.
Also if you want to do childcare but can't commit to EVERY Thursday...we could potentially do a rotating schedule where you would only do it every other Thursday or something of that nature...if we get to that point, I'll probably ask one of you to schedule that for me as I have a billion things on my plate...anyone LOVE to schedule? lol. I need you. Whoever you are.
Okay....so that's that. I don't think I made any sense.
On a good note, we were in "the city" (as I don't want to specify where...this is the Internet after all) today at Target . Maddy was sitting in her double stroller with Maelle when suddenly I saw her start to gesture with her hands and then say "roun n roun....roun n roun" - totally singing "the wheels on the bus" - something that I have been singing to her all week after supper. She did the entire hand motions with me and Eva!!! On her own! I can't tell you how awesome it is to hear your child sing a song for the first time. While all she sang was 'roun n roun' - it was great.
So great to see her so connected.
There was a lot of scheduling to be done in order to fit Maddy's therapies back to back and to fit Maelle in there once a week for speech as well...and at the same time so we are only there for an hour...yes, 3 hours of driving for an hour of therapy....crazy right? But we're doing it. That's all there is to it.
Monday - Maddy will be doing her own ST and OT on Monday mornings and after thinking about it, Justin decided to take a half day on Monday and take Maddy to therapy on Monday mornings. I am willing to do it myself...even if it does mean leaving at 7 am....but I was very upset about having to give up my Mommy Bible study on Mondays. I know...in the grand scheme of everything, it may seem minor...having to stop going to bible study. Yet, I was heartbroken about it. I love those ladies and I love having that time to focus on ME and my relationship with my creator. And I can't be the sole therapy lady...it seems fair that one of us goes once a week and I'm not going twice a week all the time. It also means that most likely Maddy will nap on the way home and I can do her EIBI therapy in the afternoon while Maelle naps. Eva....I'm thinking about maybe she could take that time to spend with her great grandma, but I will need to check with her for that. I'm sure when Maelle gives up her naps in the afternoon, this will change...but for now that seems to work.
Tuesday/Thursday - Maddy will have her EIBI therapy from 9 to 11. I will need either a therapist or childcare those days...
Wednesday - We have Early intervention at our house at 10:30 so it looks like maybe we'll just have an hour of EIBI in the morning before Lori comes and possibly doing something in the afternoon after nap time...I'm not sure yet on Wednesdays. Possibly doing a 2 hour block after 3pm??? I would need a therapist or childcare from 3-5 then.
Friday - Both girls have speech and Maddy has OT - we will be gone roughly 9:30 to 1:30....the girls will nap in the car those days, I would imagine. So I would need a therapist/childcare from 2 to 4. And possibly someone to take Eva those mornings...she can come with, but you can imagine how boring of a trip that would be weekly for her!
The weekends, we will handle on our own....unless there are some of you who want to help and can only do her therapy on a weekend...we'll take ya then. I know for many the weekend is family time so I understand.
So email me....facebook me...comment...let me know if you can help or if there is another time that you can help or what not. I know alot of you have offered to help me...here is the childcare/therapy section of our support group. I will put up a weekly calendar once I have things more concrete. The EIBI part will obviously not start until after the workshop on the 13th. BUT the ST/OT part of therapy starts this Friday... The Monday speech will not start until Sept. 20.
To clarify...I need potential childcare for Eva on Fridays now until mid-September when everything else starts up too. Also, I need childcare for Monday Sept. 13. - ALL DAY for the workshop.
Also if you want to do childcare but can't commit to EVERY Thursday...we could potentially do a rotating schedule where you would only do it every other Thursday or something of that nature...if we get to that point, I'll probably ask one of you to schedule that for me as I have a billion things on my plate...anyone LOVE to schedule? lol. I need you. Whoever you are.
Okay....so that's that. I don't think I made any sense.
On a good note, we were in "the city" (as I don't want to specify where...this is the Internet after all) today at Target . Maddy was sitting in her double stroller with Maelle when suddenly I saw her start to gesture with her hands and then say "roun n roun....roun n roun" - totally singing "the wheels on the bus" - something that I have been singing to her all week after supper. She did the entire hand motions with me and Eva!!! On her own! I can't tell you how awesome it is to hear your child sing a song for the first time. While all she sang was 'roun n roun' - it was great.
So great to see her so connected.
Monday, August 23, 2010
I got this.
Yesterday was a bit of a break through day. When I look at it, last week was a breakthrough week. On Tuesday she began saying "oh no" when her shoe came off. By Thursday she was saying "Oh no, my shoe!" and by Sunday she said this: "oh no, my shoe come off!" An entire six word sentence. And she did it not once but twice so both Justin and I could hear it. And we did.
No fluke. A real sentence.
Then in the moments after her shoe came off the first time, she did something even more amazing than that. I know...a month ago that sentence would have been unheard of and so would have this:
So Maddy was up during nap time since she had napped earlier in the day. Just Eva and Maddy were up playing and Maelle was in her room napping. After an hour and half into her nap, she started crying. This isn't totally unusual. I'm sure she just lost her Nuk or something (yes, my nearly 27 month old twins still use pacifiers to sleep...shoot me. But Eva used hers to sleep with until she was a month shy of 3...and she's fine.) And I normally just ignore her and she will put herself back to sleep. Only this time....this beautiful time. Maddy heard her. And she became alarmed that her sister was crying in her room. She stopped what she was doing, looked at me, I acknowledged that I heard it too, she walked over to Maelle's door and began to gesture to me that we should go help Maelle. She said "open" when she got to the door (open is a famous word in our house these days) and waited for me to open the door. So, I did. She ran into the room...yelling "HI!" as if to save the day, found Maelle in her toddler bed, ran around to the side of it and noticing that Maelle had her Nuk, she pointed to it and said to me "baby".
Wow.
That series of events, while seemingly normal for any other child, are HUGE for Maddy. HUGE. Like Mount Everest huge. To show how huge this is...let me break it down. Not that I think you are too dumb to figure it out but for my own mind...here it goes.
So the fact that she did those entire series of events shows me that she is becoming more of our world. She is plugging in to us and out of her autism world. I could cry. If she did nothing else, if she reverted back to her own autism utopia...I know that she was here. We had her. I'm gonna do my best to keep drawing her out and with us. She can do this.
When we made the decision to switch therapists for Speech and I wrote about how horrible making decisions were, I had the underlying theme that I had no idea if I was doing the right thing. I had told Justin and my friend Laurel that it's not like life is a game show where you get this instant response. There are no flashing lights and some fake announcer voice booming into a microphone, "Congratulations, you have made the best choice....Johnny, tell them what they've won!"
It just isn't like that. And maybe in some ways I was asking God for a sign of some sorts. A kind of reassurance that we were doing what we were supposed to be doing. And I think I got it.
There is alot of ideals out there on asking God for signs and reading into things....I'm not going to get into that. I am going to say that I did feel His presence yesterday when she was with me. I did feel a sense of "relax, my child, I got this. Look at her. No...really...LOOK AT HER. Trust Me, I got this."
Even when our news isn't always so great. I feel peace. Today we found out that Maelle will not be able to go to preschool because the teacher had lost her helper. I know she felt really bad about having offered to help and then having to back out of it. I was a little saddened but I understand. I feel for her more than anything. It does kinda bring me back to square one as I thought I had 2 days of childcare taken care of while I did Maddy's therapy but that's ok. It will work out somehow. I don't know how. I have entirely NO clue. But it will.
For a moment I flipped out this morning as I lay in bed protesting that it was Monday morning, worrying about child care when we have the EIBI workshop at the church. Everyone I know who usually babysits for us will be at the training...and it's an entire day. My grandmother offered to watch them at the church but the ENTIRE day? I can't have them there all day long...that just won't work. But then I just stopped. It will work out somehow. It just will. I don't know. I have NO clue. But it will.
So while there a billion unknowns...I know there is one thing I am sure of. He's got this. No matter how it turns out. He's got it.
No fluke. A real sentence.
Then in the moments after her shoe came off the first time, she did something even more amazing than that. I know...a month ago that sentence would have been unheard of and so would have this:
So Maddy was up during nap time since she had napped earlier in the day. Just Eva and Maddy were up playing and Maelle was in her room napping. After an hour and half into her nap, she started crying. This isn't totally unusual. I'm sure she just lost her Nuk or something (yes, my nearly 27 month old twins still use pacifiers to sleep...shoot me. But Eva used hers to sleep with until she was a month shy of 3...and she's fine.) And I normally just ignore her and she will put herself back to sleep. Only this time....this beautiful time. Maddy heard her. And she became alarmed that her sister was crying in her room. She stopped what she was doing, looked at me, I acknowledged that I heard it too, she walked over to Maelle's door and began to gesture to me that we should go help Maelle. She said "open" when she got to the door (open is a famous word in our house these days) and waited for me to open the door. So, I did. She ran into the room...yelling "HI!" as if to save the day, found Maelle in her toddler bed, ran around to the side of it and noticing that Maelle had her Nuk, she pointed to it and said to me "baby".
Wow.
That series of events, while seemingly normal for any other child, are HUGE for Maddy. HUGE. Like Mount Everest huge. To show how huge this is...let me break it down. Not that I think you are too dumb to figure it out but for my own mind...here it goes.
- she HEARD maelle cry. Alot of time ASD kids with hearing sensory issues cannot pin point one sound to the next. To them it is a jumbled mess of noise all at the exact same frequency. While you and I might hear a soft baby crying and a loud squeaky toy...she hears them both at the same level. So she had to pick out Maelle's cry from all the other things going on in the house.
- She stopped what she was doing. Because she hears things the same level - it all becomes a blur that she can easily tune out. But it appears that by our persistence to make her part of our world instead of hers, she could assess that Maelle's crying was something different and she needed to do something.
- She looked for me. She recognized that I am Mommy and I can help. That when someone is in trouble, Mommy should be told.
- She went to Maelle's door. She could tell that her sister was not in the same room with her so she followed the noise to the source.
- She asked to open the door. She vocalized with the actual word that she needed something done for her.
- She ran in to save the day. By her smiling and saying "HI!", in her mind, would help her sister feel better. She was considering her sister. Something I have rarely, if ever, saw her do.
- Seeing the nuk, she identified it as a object that a "baby" would have and she saw that her sister was, in a sense, pretending to be a baby.
So the fact that she did those entire series of events shows me that she is becoming more of our world. She is plugging in to us and out of her autism world. I could cry. If she did nothing else, if she reverted back to her own autism utopia...I know that she was here. We had her. I'm gonna do my best to keep drawing her out and with us. She can do this.
When we made the decision to switch therapists for Speech and I wrote about how horrible making decisions were, I had the underlying theme that I had no idea if I was doing the right thing. I had told Justin and my friend Laurel that it's not like life is a game show where you get this instant response. There are no flashing lights and some fake announcer voice booming into a microphone, "Congratulations, you have made the best choice....Johnny, tell them what they've won!"
It just isn't like that. And maybe in some ways I was asking God for a sign of some sorts. A kind of reassurance that we were doing what we were supposed to be doing. And I think I got it.
There is alot of ideals out there on asking God for signs and reading into things....I'm not going to get into that. I am going to say that I did feel His presence yesterday when she was with me. I did feel a sense of "relax, my child, I got this. Look at her. No...really...LOOK AT HER. Trust Me, I got this."
Even when our news isn't always so great. I feel peace. Today we found out that Maelle will not be able to go to preschool because the teacher had lost her helper. I know she felt really bad about having offered to help and then having to back out of it. I was a little saddened but I understand. I feel for her more than anything. It does kinda bring me back to square one as I thought I had 2 days of childcare taken care of while I did Maddy's therapy but that's ok. It will work out somehow. I don't know how. I have entirely NO clue. But it will.
For a moment I flipped out this morning as I lay in bed protesting that it was Monday morning, worrying about child care when we have the EIBI workshop at the church. Everyone I know who usually babysits for us will be at the training...and it's an entire day. My grandmother offered to watch them at the church but the ENTIRE day? I can't have them there all day long...that just won't work. But then I just stopped. It will work out somehow. It just will. I don't know. I have NO clue. But it will.
So while there a billion unknowns...I know there is one thing I am sure of. He's got this. No matter how it turns out. He's got it.
Saturday, August 21, 2010
trust.
We decided to switch Speech Therapists.
Neither one of us knows if this is the best idea or not but we didn't feel comfortable with leaving things how they were. I didn't want to waste anyone's time if I didn't feel that we were seeing the person who best fits Maddy's needs. I am sure that ST does a great job with the other patients she sees. She just wasn't right for Maddy, in my opinion, so it's best to sever ties early.
Of course this leaves us with a new issues of now having to travel a much longer distance twice a week for speech and OT therapy. It isn't too much of an issue right now but it will be a problem when winter hits. I know Justin and I both pray for snow every year (yes we are those people) but this year I'll be hoping for a mild winter. I am not incapable of driving in the winter or in snow or anything of that...in fact, I'm actually relatively good at it...but I don't necessarily like it. And when I have any of my babies with me in the car then I really don't like it. But I'm just going to have to trust that this is the direction we are supposed to go.
The rural outreach program offered by our hospital is a nice thing to have, I'm sure, for people not necessarily needing the specific kind of treatment that Maddy needs. The problem is that there isn't anything real definite. There was no specific room just for speech therapy...one day we were using an ER trauma room as our speech room. Watching my 2 year old sit on a chair next to a bed with stirrups on the end while she tried to play with her speech toys was just unnerving. My mind kinda went...wait, what? What is...this?! The only other option was a family room in the hospital that had a table, couch, television....one of those rooms that even I, myself, sat in as we watched the hours on the clock tick away with my Grandpa M on his last few hours of life. Also very unnerving. I'm not saying that my child deserves a special room just for HER...but I am saying that any kind of speech therapy should have a room for it. Not some corner that no one is using at the moment.
And the option of coming to our house or Maddy's therapy room at the church (yes, I need to get that set up...mental note, go do that.) was out of the question...apparently we had to use the hospital facilities.Or lack their of. Weird.
So now we're waiting again...which is a horrible feeling. Absolutely gross. We waited a month for speech to start and then we turned her down so do we have to wait another month to find someone else? I really hope not. I have enough guilt as it is. The hospital was supposed to call yesterday afternoon with a schedule for us but they didn't. That doesn't make me feel any better. And while the scheduling lady is off enjoying her weekend with her family, I am watching my child and second guessing every move I am making. Parenting, when having to make the huge major decisions and not knowing if those were the right decisions, sucks.
Because all I hear is tick....tick....tick...in my brain. Everything says you gotta get this going NOW. If you get to 3 and you haven't started, you lost the best possible time for treatment. In 2 weeks she will be 27 months old and still no real therapy in line yet.
Breathe.
It is insanely hard to relax about this. Worrying doesn't do any good. It's human nature. My human nature. I know that I need to let go, trust that I am doing everything I can and let God take care of the rest. I KNOW that. Can I DO that? I don't know. It's in my brain...but my heart hasn't totally let go of this control issue. This need to try and control every aspect of everything so I can fix it. Even though I am drowning in myself. It's overwhelming. It's suffocating. And heartbreaking.
On Thursday Justin made me take Maelle to the beach. MADE me. Eva had gone to a friend's house. Maddy was napping after her 4 am wake up call. So it was just Maelle awake and both of us were home. He grabbed her swim suit and life jacket and demanded that I take her to the beach for some one on one time...something I barely EVER have with Maelle. I refused at first...I have too much to do. But he insisted. So off Maelle and I went. I felt horribly guilty to both Maelle and everyone else on the planet. On one hand, I was having someone else watch my oldest child and she was even volunteering to do some of our laundry to help me and here I was tripping off to the beach like it was nothing. And on the other hand, I never spend any time with my middle child...ever. She is always with a sister if she is with me. So it was much needed.
And as I sat on the sand and watched my beautiful normal spectrum functioning two year old throw rocks into the lake and giggle and laugh, I started to cry. She is so awesome and I'm missing her. She's being thrown into the "you're normal therefore you're fine" category. I was becoming one of those parents who neglects their other kids and only focuses on the "sick child". Though totally NOT intentionally. I mean, how could I not? It's typical trauma code...deal with the most life threatening patient first and work down from there. Do enough to get by with the others so they are okay. Not that parenting is trauma code...but you get the analogy, right? (no, i have no experience in the medical field...just raised by parents who were)
I did my best to let go of everything else that was happening at home and just focus on the beach, Maelle, and me. We had fun. She was amused by the sand and the rocks and the water. We stayed an hour and then she just put her shoes on and looked up at me with her beautiful crystal blue eyes and said "go go?"
I love her. I can only hope that I don't have to be forced into reminding myself to spend time with just her. That she has needs too. She needs her "ommy" just like Maddy does. And Eva does.
The moral was not to get so caught up in helping Maddy that I'm missing the bigger picture. I have to trust that God will give us the tools to do this. That He will sustain us. He will guide us through this path and however autistic spectrum or not that Maddy ends up being....she will be okay. She will be Maddy. And we will be a family. The housework will get done eventually. The meals will be cooked. The dogs will be walked and trained. The cats will be fed. The therapy will be done. And life will go on. We will make it. I have to trust that God gave us Maddy for a reason. She was our twin that we weren't planning on and her surprise existence and then surprise autism are all for something much greater than just US.
I can see her changes everyday and those changes are outward and not inward. That needs to give me hope. That He is providing a way for her. The simple fact that one day she was sitting on the slide waiting for her sister to climb up the ladder and she looked over at her, smiled, and said to her sister, "Hi Maya!"
That proves to me that we are not alone in this battle. We are never alone. Ever.
Neither one of us knows if this is the best idea or not but we didn't feel comfortable with leaving things how they were. I didn't want to waste anyone's time if I didn't feel that we were seeing the person who best fits Maddy's needs. I am sure that ST does a great job with the other patients she sees. She just wasn't right for Maddy, in my opinion, so it's best to sever ties early.
Of course this leaves us with a new issues of now having to travel a much longer distance twice a week for speech and OT therapy. It isn't too much of an issue right now but it will be a problem when winter hits. I know Justin and I both pray for snow every year (yes we are those people) but this year I'll be hoping for a mild winter. I am not incapable of driving in the winter or in snow or anything of that...in fact, I'm actually relatively good at it...but I don't necessarily like it. And when I have any of my babies with me in the car then I really don't like it. But I'm just going to have to trust that this is the direction we are supposed to go.
The rural outreach program offered by our hospital is a nice thing to have, I'm sure, for people not necessarily needing the specific kind of treatment that Maddy needs. The problem is that there isn't anything real definite. There was no specific room just for speech therapy...one day we were using an ER trauma room as our speech room. Watching my 2 year old sit on a chair next to a bed with stirrups on the end while she tried to play with her speech toys was just unnerving. My mind kinda went...wait, what? What is...this?! The only other option was a family room in the hospital that had a table, couch, television....one of those rooms that even I, myself, sat in as we watched the hours on the clock tick away with my Grandpa M on his last few hours of life. Also very unnerving. I'm not saying that my child deserves a special room just for HER...but I am saying that any kind of speech therapy should have a room for it. Not some corner that no one is using at the moment.
And the option of coming to our house or Maddy's therapy room at the church (yes, I need to get that set up...mental note, go do that.) was out of the question...apparently we had to use the hospital facilities.Or lack their of. Weird.
So now we're waiting again...which is a horrible feeling. Absolutely gross. We waited a month for speech to start and then we turned her down so do we have to wait another month to find someone else? I really hope not. I have enough guilt as it is. The hospital was supposed to call yesterday afternoon with a schedule for us but they didn't. That doesn't make me feel any better. And while the scheduling lady is off enjoying her weekend with her family, I am watching my child and second guessing every move I am making. Parenting, when having to make the huge major decisions and not knowing if those were the right decisions, sucks.
Because all I hear is tick....tick....tick...in my brain. Everything says you gotta get this going NOW. If you get to 3 and you haven't started, you lost the best possible time for treatment. In 2 weeks she will be 27 months old and still no real therapy in line yet.
Breathe.
It is insanely hard to relax about this. Worrying doesn't do any good. It's human nature. My human nature. I know that I need to let go, trust that I am doing everything I can and let God take care of the rest. I KNOW that. Can I DO that? I don't know. It's in my brain...but my heart hasn't totally let go of this control issue. This need to try and control every aspect of everything so I can fix it. Even though I am drowning in myself. It's overwhelming. It's suffocating. And heartbreaking.
On Thursday Justin made me take Maelle to the beach. MADE me. Eva had gone to a friend's house. Maddy was napping after her 4 am wake up call. So it was just Maelle awake and both of us were home. He grabbed her swim suit and life jacket and demanded that I take her to the beach for some one on one time...something I barely EVER have with Maelle. I refused at first...I have too much to do. But he insisted. So off Maelle and I went. I felt horribly guilty to both Maelle and everyone else on the planet. On one hand, I was having someone else watch my oldest child and she was even volunteering to do some of our laundry to help me and here I was tripping off to the beach like it was nothing. And on the other hand, I never spend any time with my middle child...ever. She is always with a sister if she is with me. So it was much needed.
And as I sat on the sand and watched my beautiful normal spectrum functioning two year old throw rocks into the lake and giggle and laugh, I started to cry. She is so awesome and I'm missing her. She's being thrown into the "you're normal therefore you're fine" category. I was becoming one of those parents who neglects their other kids and only focuses on the "sick child". Though totally NOT intentionally. I mean, how could I not? It's typical trauma code...deal with the most life threatening patient first and work down from there. Do enough to get by with the others so they are okay. Not that parenting is trauma code...but you get the analogy, right? (no, i have no experience in the medical field...just raised by parents who were)
I did my best to let go of everything else that was happening at home and just focus on the beach, Maelle, and me. We had fun. She was amused by the sand and the rocks and the water. We stayed an hour and then she just put her shoes on and looked up at me with her beautiful crystal blue eyes and said "go go?"
I love her. I can only hope that I don't have to be forced into reminding myself to spend time with just her. That she has needs too. She needs her "ommy" just like Maddy does. And Eva does.
The moral was not to get so caught up in helping Maddy that I'm missing the bigger picture. I have to trust that God will give us the tools to do this. That He will sustain us. He will guide us through this path and however autistic spectrum or not that Maddy ends up being....she will be okay. She will be Maddy. And we will be a family. The housework will get done eventually. The meals will be cooked. The dogs will be walked and trained. The cats will be fed. The therapy will be done. And life will go on. We will make it. I have to trust that God gave us Maddy for a reason. She was our twin that we weren't planning on and her surprise existence and then surprise autism are all for something much greater than just US.
I can see her changes everyday and those changes are outward and not inward. That needs to give me hope. That He is providing a way for her. The simple fact that one day she was sitting on the slide waiting for her sister to climb up the ladder and she looked over at her, smiled, and said to her sister, "Hi Maya!"
That proves to me that we are not alone in this battle. We are never alone. Ever.
Tuesday, August 17, 2010
divided front.
Pretty much everything I have read that has been written by parents of Autistic children say the same thing...a subtle warning to prepare yourself for hitting about 900 roadblocks when it comes to therapy and decisions and whose opinions count and whose don't.
A month into this and we hit our first one. And yes, it has to do with PECS, that I mentioned in the last post.
I kinda sorta saw this coming but I was trying to ignore my gut. Something, that yes, I know I should not be ignoring. But you know when you're being thrown into an entire new world of things, you tend to not know what to think or what to trust.
So Justin took the girls to speech today. He offered and I took him up on it, giving me a chance to do some much needed deep cleaning in the house without the girls present. In all reality, I should have taken the opportunity to take a nap or enjoy a moment of my life without kids, but of course the practical side of me saw an opening in the war of mom vs. house + kids.
He asked ST if she had talked to Dr. MAL about PECS and unfortunately she had not had that conversation yet with Dr. MAL. So Justin informed her of our decision and from what he said, the defense gear came on. And thus begins the battle of whose therapy is the best therapy. Really. In 2010, we are still dealing with the SAME issues that Catherine Maurice dealt with in 1987?! Really?!
It makes my blood boil. It really does. Because I don't care WHO is right, I just want my daughter. I just want her. I don't want to win awards for finding the best therapy options in rural America. I don't want to be recognized as some kind of pioneer. I want my Maddy. That's it.
Instead I'm getting a frustrated and anguished little girl whose world is slowly being swallowed up by a big black sea. All I want to do is rescue her and I'm grasping at as many red lifesavers as I can.
And not only was the defense gear on but so was the offensive gear too...specifically towards Dr. MAL and how ST thought her ideas were "out there". (In Dr. MAL's defense, she spent her entire grad program in Autism and studied under Dr. Mulick who has ties to Dr. Lovaas, the pioneer himself...Mulick who has his own success rates with EIBI and...blah blah blah...she knows her stuff. Alot of people still think Lovaas was a robot creator and not really helping children recover from Autism) ST then informed Justin that she studied at a specialized school for autism..therefore she knows how effective PECS is. Which Justin raised the question that if she studied there then why she she only doing speech and not more Autism specific therapy such as ABA or what not. Is there such a thing called a PECS specialist? She might as well be one.
Eventually she realized how she was appearing and gave up to say, "well, you are her parents and you can decide what kind of therapy she receives." Thanks for stating the obvious.
So here we are. I don't really know if I want to continue speech therapy with her...but if not, we're looking at a 3 hour round trip commute twice a week for 30 minutes. Yet, there is a possibility that maybe I could schedule her OT the same day as her speech so at least the trip would benefit twice. As if we're not fighting a hard enough battle with Autism in itself, let's throw in the distance, the remoteness, and lack of professional personnel.
I feel like I'm beating my head against a wall. A rock solid wall.
For the last few weeks I have been physically sick to my stomach at night. I thought for awhile that I had caught a bug but a month later, I have realized that it's me. I'm literally making myself sick with worry. At times in my life, I've lost my appetite due to stress or depression but this is new. I have never felt nauseous over something. So physically ill with worry.
The weight of the world seems to be on our shoulders. The weight of Maddy's world. And every new decision or obstacle adds a few bricks. Because there is no way to know at this point if we are making the right decision. And the dark mud that we are mucking through isn't getting any clearer.
I know that every child on the autistic spectrum is unique and therefore that child's therapy needs to be unique...so why are we attacking the different approaches? Why? Don't we all want the same thing? Our kids back?
A month into this and we hit our first one. And yes, it has to do with PECS, that I mentioned in the last post.
I kinda sorta saw this coming but I was trying to ignore my gut. Something, that yes, I know I should not be ignoring. But you know when you're being thrown into an entire new world of things, you tend to not know what to think or what to trust.
So Justin took the girls to speech today. He offered and I took him up on it, giving me a chance to do some much needed deep cleaning in the house without the girls present. In all reality, I should have taken the opportunity to take a nap or enjoy a moment of my life without kids, but of course the practical side of me saw an opening in the war of mom vs. house + kids.
He asked ST if she had talked to Dr. MAL about PECS and unfortunately she had not had that conversation yet with Dr. MAL. So Justin informed her of our decision and from what he said, the defense gear came on. And thus begins the battle of whose therapy is the best therapy. Really. In 2010, we are still dealing with the SAME issues that Catherine Maurice dealt with in 1987?! Really?!
It makes my blood boil. It really does. Because I don't care WHO is right, I just want my daughter. I just want her. I don't want to win awards for finding the best therapy options in rural America. I don't want to be recognized as some kind of pioneer. I want my Maddy. That's it.
Instead I'm getting a frustrated and anguished little girl whose world is slowly being swallowed up by a big black sea. All I want to do is rescue her and I'm grasping at as many red lifesavers as I can.
And not only was the defense gear on but so was the offensive gear too...specifically towards Dr. MAL and how ST thought her ideas were "out there". (In Dr. MAL's defense, she spent her entire grad program in Autism and studied under Dr. Mulick who has ties to Dr. Lovaas, the pioneer himself...Mulick who has his own success rates with EIBI and...blah blah blah...she knows her stuff. Alot of people still think Lovaas was a robot creator and not really helping children recover from Autism) ST then informed Justin that she studied at a specialized school for autism..therefore she knows how effective PECS is. Which Justin raised the question that if she studied there then why she she only doing speech and not more Autism specific therapy such as ABA or what not. Is there such a thing called a PECS specialist? She might as well be one.
Eventually she realized how she was appearing and gave up to say, "well, you are her parents and you can decide what kind of therapy she receives." Thanks for stating the obvious.
So here we are. I don't really know if I want to continue speech therapy with her...but if not, we're looking at a 3 hour round trip commute twice a week for 30 minutes. Yet, there is a possibility that maybe I could schedule her OT the same day as her speech so at least the trip would benefit twice. As if we're not fighting a hard enough battle with Autism in itself, let's throw in the distance, the remoteness, and lack of professional personnel.
I feel like I'm beating my head against a wall. A rock solid wall.
For the last few weeks I have been physically sick to my stomach at night. I thought for awhile that I had caught a bug but a month later, I have realized that it's me. I'm literally making myself sick with worry. At times in my life, I've lost my appetite due to stress or depression but this is new. I have never felt nauseous over something. So physically ill with worry.
The weight of the world seems to be on our shoulders. The weight of Maddy's world. And every new decision or obstacle adds a few bricks. Because there is no way to know at this point if we are making the right decision. And the dark mud that we are mucking through isn't getting any clearer.
I know that every child on the autistic spectrum is unique and therefore that child's therapy needs to be unique...so why are we attacking the different approaches? Why? Don't we all want the same thing? Our kids back?
Saturday, August 14, 2010
scattered.
The EIBI workshop is scheduled for Sept. 13th. If you need more info than that, let me know. EIBI stands for Early Intensive Behavioral Intervention and is a form of ABA and of course is a form of the behavioral therapy that was first integrated by Dr. Lovaas back in the 70s and 80s and so forth. You can learn a little bit more about EIBI here on the Association for Science in Autism Treatment website.
We met with Maddy's psychologist, Dr. MAL (using initials) on Thursday. The visit went really well. She will be leading the workshop in September, of course, and we feel comfortable with her expertise as we travel down this road of therapy and hopeful recovery.
(sidenote. let me apologize if this is the most choppy and weird post that I ever write. My brain isn't in "writing form" so I'm grasping just trying to make some congruency in writing this entry. Normally I would just put it off but I need to get the info out there)
Dr. MAL took down the names of all of Maddy's current therapists and will be calling them to establish some congruency to her therapy sessions. The problem that I was seeing was mostly in Speech and the PEC system. Remember when I mentioned PECS in the last post (PECS actually stands for Picture Exchange Communication System)? Well...from early on I could tell that Maddy was having some trouble wrapping her mind around this. Basically in the early stages that we are in of Speech, PECS was introduced with a "more" card. ST wrote "more" on a card and then had Maddy hand her the card when she wanted more of something. The problem that I was seeing was that Maddy already knows the sign for "more" and she is beginning to say it as well. The card was meaningless to her because she doesn't read and she really didn't have any clue of whether she should be signing "more" (like I require her to do at home) or giving this card to ST for more. Many times she tried to both but you can imagine that would be frustrating. Think of your everyday conversation and then imagine that you would have to hand someone a card or picture for everything you wanted to have or to express EVEN THOUGH you could sign or speak it. Annoying, right? And in a sense eliminated the need to speak if you can just hand someone a picture for it.
Now, do not think, for those of you who are in the "know" of everything I am talking about, that I am bashing PECS because I'm not. I think it would be/is highly useful for people who cannot speak or are not showing any signs of any kind of verbal or sign communication. In those situations, I can only imagine how VALUABLE this PECS system is. I bet it truly is amazing.
However, Maddy is showing signs of speaking...she has roughly 30 words at this point (mirror that to the mere 10 she had in April when we started Early Intervention) and a dozen more signs that she doesn't speak at this point. And she babbles. Plus she is beginning to use up to a 3 word combination. Such as "here you go". She added "welcome" this week after she hears "thank you" or says thank you. And so obviously we are at the threshold of some really awesome speech...let's not confuse that with pictures. Of course we will still use them as like a visual aid...such as a schedule of what we're doing today but not as a basis for her communication TO us.
Okay. Enough of that. And for all of you who are going...what? I know. A month ago I would have been SO confused too. Thankfully I have this college degree in broadcasting which taught me how to think like an expert at something in a short amount of time...not that I am...but it comes in handy. Who would have thought being a reporter would pay off after I've been out of that industry for 4 years now?
Either way, I think any parent with a special needs child would understand that sometimes while all of your help has the best intentions....it's like being pulled in a million different directions at the same time. Everyone, including the general public and medical professionals alike, has an opinion on how you should be helping your child. Heck, most PARENTS in general know that. The unsolicited advice can be deafening. But so can the silence...so while I don't always appreciate everyone's opinions...I don't hate it either. Because the double edged sword of this is that sometimes when people say NOTHING to you about your child, it hurts more. It makes your child and your current situation, invisible.
Wow...I wasn't even meaning to talk about that today.... Anyway, I am a mess...of sorts. All I want is for Maddy to be "fine" - whatever that is. Sometimes I want to just wake up and she's smiling and talking to me and shows no autism aspects. I know that's SO unreal but I think it would be weird if I didn't wish for that. I know there is NO miracle cure for autism and I know we have a long road ahead of us. I know these things but my human brain still wishes that it wasn't true. I'm sure anyone with kids who have illnesses like cancer or diabetes or heart problems or tourrettes or Downs or any of them ALL wish their kids would wake up one day and be "fine". Like, oh, it was a mistake and your child is fine. Normal functioning child with no medical issues.
They say having your child diagnoses (preliminary or not) with Autism requires a grieving process. Just like any kind of loss, there requires a grieving process. I don't know what stage I'm at. I'm not in denial but maybe it's some kind of hopeful/realistic denial...like yes, i know it's true but I wish it wasn't. I'm still gonna fight really hard for it not to be true someday eventhough it is now. If that makes any sense.
Alright, just to wrap up this very scattered and jumbled entry. For those of you looking to HELP us. There is the workshop on Monday the 13th of Sept. If you have no desire to take part in the workshop, I will need childcare for my kids and those other mothers who will be attending sans kids. My friend Laurel is organizing a signup for bringing us meals twice a week...you can contact her about that - if you don't know her or what not, email me: jbkatt@yahoo.com and I can get you connected. Other needs include child care for Maelle and Eva - roughly 2 hours a day 5 days a week - you can sign up for one day of that week and Maddy's therapy will be at the church so you can even watch them there if you don't want to/can't bring them to your house or you can come to my house. And general housework. Such as helping me by washing/vacuuming my floors once a week or folding laundry or dusting or helping me organize this clutter. It's not always the huge things...sometimes it's the little things adding up that make everything very overwhelming for all of us. Like taking 30 minutes to come over and unload/load my dishwasher. Or changing our bedding. Seriously.
And if you want to know, in all honesty, it is VERY hard and VERY humbling to have to ask for these things. As mothers, we like to think we can do EVERYTHING and when we can't then we have failed in some ways. It's true. But my daughter's life is at stake and not my pride nor what I think other people think of me. Honestly, I just don't have time to mop my kitchen floor. Someday I will again. But not now. So for those who want to help...that is how you can help me. And prayer. Pray. If you can't do anything on my little list, pray. For Maddy. For me. For Justin. For Eva. For Maelle...just pray.
We met with Maddy's psychologist, Dr. MAL (using initials) on Thursday. The visit went really well. She will be leading the workshop in September, of course, and we feel comfortable with her expertise as we travel down this road of therapy and hopeful recovery.
(sidenote. let me apologize if this is the most choppy and weird post that I ever write. My brain isn't in "writing form" so I'm grasping just trying to make some congruency in writing this entry. Normally I would just put it off but I need to get the info out there)
Dr. MAL took down the names of all of Maddy's current therapists and will be calling them to establish some congruency to her therapy sessions. The problem that I was seeing was mostly in Speech and the PEC system. Remember when I mentioned PECS in the last post (PECS actually stands for Picture Exchange Communication System)? Well...from early on I could tell that Maddy was having some trouble wrapping her mind around this. Basically in the early stages that we are in of Speech, PECS was introduced with a "more" card. ST wrote "more" on a card and then had Maddy hand her the card when she wanted more of something. The problem that I was seeing was that Maddy already knows the sign for "more" and she is beginning to say it as well. The card was meaningless to her because she doesn't read and she really didn't have any clue of whether she should be signing "more" (like I require her to do at home) or giving this card to ST for more. Many times she tried to both but you can imagine that would be frustrating. Think of your everyday conversation and then imagine that you would have to hand someone a card or picture for everything you wanted to have or to express EVEN THOUGH you could sign or speak it. Annoying, right? And in a sense eliminated the need to speak if you can just hand someone a picture for it.
Now, do not think, for those of you who are in the "know" of everything I am talking about, that I am bashing PECS because I'm not. I think it would be/is highly useful for people who cannot speak or are not showing any signs of any kind of verbal or sign communication. In those situations, I can only imagine how VALUABLE this PECS system is. I bet it truly is amazing.
However, Maddy is showing signs of speaking...she has roughly 30 words at this point (mirror that to the mere 10 she had in April when we started Early Intervention) and a dozen more signs that she doesn't speak at this point. And she babbles. Plus she is beginning to use up to a 3 word combination. Such as "here you go". She added "welcome" this week after she hears "thank you" or says thank you. And so obviously we are at the threshold of some really awesome speech...let's not confuse that with pictures. Of course we will still use them as like a visual aid...such as a schedule of what we're doing today but not as a basis for her communication TO us.
Okay. Enough of that. And for all of you who are going...what? I know. A month ago I would have been SO confused too. Thankfully I have this college degree in broadcasting which taught me how to think like an expert at something in a short amount of time...not that I am...but it comes in handy. Who would have thought being a reporter would pay off after I've been out of that industry for 4 years now?
Either way, I think any parent with a special needs child would understand that sometimes while all of your help has the best intentions....it's like being pulled in a million different directions at the same time. Everyone, including the general public and medical professionals alike, has an opinion on how you should be helping your child. Heck, most PARENTS in general know that. The unsolicited advice can be deafening. But so can the silence...so while I don't always appreciate everyone's opinions...I don't hate it either. Because the double edged sword of this is that sometimes when people say NOTHING to you about your child, it hurts more. It makes your child and your current situation, invisible.
Wow...I wasn't even meaning to talk about that today.... Anyway, I am a mess...of sorts. All I want is for Maddy to be "fine" - whatever that is. Sometimes I want to just wake up and she's smiling and talking to me and shows no autism aspects. I know that's SO unreal but I think it would be weird if I didn't wish for that. I know there is NO miracle cure for autism and I know we have a long road ahead of us. I know these things but my human brain still wishes that it wasn't true. I'm sure anyone with kids who have illnesses like cancer or diabetes or heart problems or tourrettes or Downs or any of them ALL wish their kids would wake up one day and be "fine". Like, oh, it was a mistake and your child is fine. Normal functioning child with no medical issues.
They say having your child diagnoses (preliminary or not) with Autism requires a grieving process. Just like any kind of loss, there requires a grieving process. I don't know what stage I'm at. I'm not in denial but maybe it's some kind of hopeful/realistic denial...like yes, i know it's true but I wish it wasn't. I'm still gonna fight really hard for it not to be true someday eventhough it is now. If that makes any sense.
Alright, just to wrap up this very scattered and jumbled entry. For those of you looking to HELP us. There is the workshop on Monday the 13th of Sept. If you have no desire to take part in the workshop, I will need childcare for my kids and those other mothers who will be attending sans kids. My friend Laurel is organizing a signup for bringing us meals twice a week...you can contact her about that - if you don't know her or what not, email me: jbkatt@yahoo.com and I can get you connected. Other needs include child care for Maelle and Eva - roughly 2 hours a day 5 days a week - you can sign up for one day of that week and Maddy's therapy will be at the church so you can even watch them there if you don't want to/can't bring them to your house or you can come to my house. And general housework. Such as helping me by washing/vacuuming my floors once a week or folding laundry or dusting or helping me organize this clutter. It's not always the huge things...sometimes it's the little things adding up that make everything very overwhelming for all of us. Like taking 30 minutes to come over and unload/load my dishwasher. Or changing our bedding. Seriously.
And if you want to know, in all honesty, it is VERY hard and VERY humbling to have to ask for these things. As mothers, we like to think we can do EVERYTHING and when we can't then we have failed in some ways. It's true. But my daughter's life is at stake and not my pride nor what I think other people think of me. Honestly, I just don't have time to mop my kitchen floor. Someday I will again. But not now. So for those who want to help...that is how you can help me. And prayer. Pray. If you can't do anything on my little list, pray. For Maddy. For me. For Justin. For Eva. For Maelle...just pray.
Saturday, August 7, 2010
connections.
Maddy had her hearing test on Friday. It went way better than I could have ever envisioned. This girl has a tendency to prove me WRONG when I think things are going go a certain way. Thankfully, she tends to prove to me that she CAN behave rather than she can't.
Her hearing was fine. Perfect. Great. No issues there. So cross that off the list.
I didn't think there were any issues but I needed to be able to cross off something from the ever growing list of things that need to be assessed.
She did great. Turned her head to the sounds, looked at the lights, and was just a joy. The amazing thing was she had 100% name recognition when we were there. She looked every time her name was called. Consider her name recognition was like 20% in April...this is huge to us. We were out of there in 15 minutes. It took longer to wait in the waiting room than to do her test (typical, right?).
We came home and had another round of speech therapy, this time implementing PEC and ABA. I still don't remember what PEC stands for...and I could google it but I'm sick so I'll just explain it at this point as picture communication. They hold up a picture to explain to Maddy what they are want. Sometimes it's a question...like choosing which picture she wants or it's a request. We start out slowly (just like ABA) and start with the concept of "more". ST (okay, yes it sounds horrible to refer to someone by their job but I'm afraid if I gave her a fake name at this point...I might actually start calling her by that name instead of her real name and yeah...so ST it is) wrote "more" on a piece of paper and made Maddy hand her the card when she wanted "more" m&ms. It took 2 turns of hand over hand (where I hold her hand and her hand holds the card and together we do the action) before she began doing it on her own. By the 6th try, she said "more".
Let's stop for a moment.
I've never head Maddy say "more" before in my life. And to any other parent, it may just be one word out of the thousands that their kids say but to me it was incredible. I couldn't think of anything more beautiful (besides I love you, mama) for her to say at this point. I had chills of excitement through my body as that little girl sat on my lap waiting for her candy.
She didn't repeat the word, though we tried to get her to say it again. But continued with the card. Nice to see it is there and she is connecting that part of her brain. We continued on to another task which involved a Polly Pocket and spoon. She was to give the item to ST depending on what she asked for. I was a bit surprised by this because it's a bit more advanced in ABA. I have read that you start with just her giving you something and then only putting one other thing in there but never asking for it and then finally asking for either item. She did well though. Once she understood what was what then she was right on.
She played for the remainder of the time showing how much of a visual learner she is. As soon as ST would do something, then she would copy that. I have always known how visual she was from a baby but now it really seems to be working in her favor....for now. It will make understanding the concepts of what we want her to do and to make those connections in her brain easier. I can predict that it might be a challenge when we start requiring her to do things with only a voice command (like bring me your shoes from another room or something like that) but that's later. Let me be happy about now. And feel a sense of joy since I too am SUCH a visual learner that I can relate to her.
Her twin sister didn't have such a wonderful time at speech at her first session, but Maelle is quite shy. And stubborn. And at this age, Eva didn't talk to anyone other than her family either. She could speak paragraphs as long as no one else was around. And sure enough, as soon as we left that room, Maelle babbled away happily down the hall holding my hand. Stinker.
Otherwise, things are going well. The melatonin has worked a magic for us as far as bedtime goes. It really is amazing the change we have seen in her. She sleeps in her bed. She hasn't been rocking to sleep. The only downside we have noticed (aside from getting her to TAKE it in the first place) is that she is waking up at 6am now. Ugh. Some mornings it is 5am. She is getting to bed earlier so she is waking earlier. I'm not sure which one I like more...but I do know that I am glad that at least she isn't rocking against the door for hours at night.
Behaviorally....she has developed some issues there. I can say that I am not at all surprised. I expected all of this change on her to manifest in some way and I had also expected it to be her mood and it has been. Don't get me wrong, she is still happy Maddy. But if she doesn't like something, the tantrum has become very physical. She is hitting, pushing, kicking, throwing herself around like a 2 year old bully. And the biting. The biting is bad. Oddly enough, I'm thankful that Eva was a biter so this isn't foreign territory. But she was much younger with her biting (which makes sense with Maddy's developmental age being around 18 months - that's how old E was when she bit) so she was easier to contain. And she didn't have anyone other than me or herself or Justin to bite. So you can imagine that Maddy's main biting target is.....Maelle. Who in turn has started to bite as well. Ah yes. Why is it that bad behaviors are easier spread than good ones? But we're dealing with it. It's challenging and frustrating but I know her frustration is the root of all of it and once we break through the communication wall we are up against, it will get better. I know this. Sometimes you have to accept some bad that comes with the good, knowing that the good will later eliminate the bad.
And we're waging a war at this point. A war against Autism. Autism that is trying to immerse Maddy in a world where only she exists. We want her in our world. With us. We will win. But it will not be easy. So I have to remember that when she is at her worst...and when she is at her best. It's a fight to drag her out of Autism's grip. I can thank Catherine Maurice for giving me those images to trudge forward with. She fought a battle and won twice....rare, but it can happen.
For now, we are in the midst of chaos. Really. Sometimes I don't even know where to begin because we went from being stuck at home to running from appt to therapy to appt to therapy and back. My house. My life. My mood. My brain. My world shows it.
Case and point: I was at the salon finally getting my haircut (it's been since February...yes, i deserved that one) and at the end of my appointment, I took out my day planner to schedule my next cut (hoping if I schedule then I won't wait half a year to do it) and the stylist admired my planner.
"oh I need to get one of those! How great, you have your own planner."
and I looked up at her and started with "Yes...." and then stopped. I was about to tell her that my child was recently diagnosed with Autism and she has so many appointments now that I needed somewhere to write them all down or I would forget and I can't forget these very important- and then I thought. STOP. This woman doesn't need to know any of this. Just say thank you.
"yes, thanks, it's nice to have" I responded and that was all. A seemingly normal conversation, thankfully to her. And that made me realize just how out of it my brain was getting. Just how immersed I am.
So forgive me if I don't stop myself in the future and we have a really odd conversation like that one could have ended up being. I realize now that my brain isn't totally connected either.
Her hearing was fine. Perfect. Great. No issues there. So cross that off the list.
I didn't think there were any issues but I needed to be able to cross off something from the ever growing list of things that need to be assessed.
She did great. Turned her head to the sounds, looked at the lights, and was just a joy. The amazing thing was she had 100% name recognition when we were there. She looked every time her name was called. Consider her name recognition was like 20% in April...this is huge to us. We were out of there in 15 minutes. It took longer to wait in the waiting room than to do her test (typical, right?).
We came home and had another round of speech therapy, this time implementing PEC and ABA. I still don't remember what PEC stands for...and I could google it but I'm sick so I'll just explain it at this point as picture communication. They hold up a picture to explain to Maddy what they are want. Sometimes it's a question...like choosing which picture she wants or it's a request. We start out slowly (just like ABA) and start with the concept of "more". ST (okay, yes it sounds horrible to refer to someone by their job but I'm afraid if I gave her a fake name at this point...I might actually start calling her by that name instead of her real name and yeah...so ST it is) wrote "more" on a piece of paper and made Maddy hand her the card when she wanted "more" m&ms. It took 2 turns of hand over hand (where I hold her hand and her hand holds the card and together we do the action) before she began doing it on her own. By the 6th try, she said "more".
Let's stop for a moment.
I've never head Maddy say "more" before in my life. And to any other parent, it may just be one word out of the thousands that their kids say but to me it was incredible. I couldn't think of anything more beautiful (besides I love you, mama) for her to say at this point. I had chills of excitement through my body as that little girl sat on my lap waiting for her candy.
She didn't repeat the word, though we tried to get her to say it again. But continued with the card. Nice to see it is there and she is connecting that part of her brain. We continued on to another task which involved a Polly Pocket and spoon. She was to give the item to ST depending on what she asked for. I was a bit surprised by this because it's a bit more advanced in ABA. I have read that you start with just her giving you something and then only putting one other thing in there but never asking for it and then finally asking for either item. She did well though. Once she understood what was what then she was right on.
She played for the remainder of the time showing how much of a visual learner she is. As soon as ST would do something, then she would copy that. I have always known how visual she was from a baby but now it really seems to be working in her favor....for now. It will make understanding the concepts of what we want her to do and to make those connections in her brain easier. I can predict that it might be a challenge when we start requiring her to do things with only a voice command (like bring me your shoes from another room or something like that) but that's later. Let me be happy about now. And feel a sense of joy since I too am SUCH a visual learner that I can relate to her.
Her twin sister didn't have such a wonderful time at speech at her first session, but Maelle is quite shy. And stubborn. And at this age, Eva didn't talk to anyone other than her family either. She could speak paragraphs as long as no one else was around. And sure enough, as soon as we left that room, Maelle babbled away happily down the hall holding my hand. Stinker.
Otherwise, things are going well. The melatonin has worked a magic for us as far as bedtime goes. It really is amazing the change we have seen in her. She sleeps in her bed. She hasn't been rocking to sleep. The only downside we have noticed (aside from getting her to TAKE it in the first place) is that she is waking up at 6am now. Ugh. Some mornings it is 5am. She is getting to bed earlier so she is waking earlier. I'm not sure which one I like more...but I do know that I am glad that at least she isn't rocking against the door for hours at night.
Behaviorally....she has developed some issues there. I can say that I am not at all surprised. I expected all of this change on her to manifest in some way and I had also expected it to be her mood and it has been. Don't get me wrong, she is still happy Maddy. But if she doesn't like something, the tantrum has become very physical. She is hitting, pushing, kicking, throwing herself around like a 2 year old bully. And the biting. The biting is bad. Oddly enough, I'm thankful that Eva was a biter so this isn't foreign territory. But she was much younger with her biting (which makes sense with Maddy's developmental age being around 18 months - that's how old E was when she bit) so she was easier to contain. And she didn't have anyone other than me or herself or Justin to bite. So you can imagine that Maddy's main biting target is.....Maelle. Who in turn has started to bite as well. Ah yes. Why is it that bad behaviors are easier spread than good ones? But we're dealing with it. It's challenging and frustrating but I know her frustration is the root of all of it and once we break through the communication wall we are up against, it will get better. I know this. Sometimes you have to accept some bad that comes with the good, knowing that the good will later eliminate the bad.
And we're waging a war at this point. A war against Autism. Autism that is trying to immerse Maddy in a world where only she exists. We want her in our world. With us. We will win. But it will not be easy. So I have to remember that when she is at her worst...and when she is at her best. It's a fight to drag her out of Autism's grip. I can thank Catherine Maurice for giving me those images to trudge forward with. She fought a battle and won twice....rare, but it can happen.
For now, we are in the midst of chaos. Really. Sometimes I don't even know where to begin because we went from being stuck at home to running from appt to therapy to appt to therapy and back. My house. My life. My mood. My brain. My world shows it.
Case and point: I was at the salon finally getting my haircut (it's been since February...yes, i deserved that one) and at the end of my appointment, I took out my day planner to schedule my next cut (hoping if I schedule then I won't wait half a year to do it) and the stylist admired my planner.
"oh I need to get one of those! How great, you have your own planner."
and I looked up at her and started with "Yes...." and then stopped. I was about to tell her that my child was recently diagnosed with Autism and she has so many appointments now that I needed somewhere to write them all down or I would forget and I can't forget these very important- and then I thought. STOP. This woman doesn't need to know any of this. Just say thank you.
"yes, thanks, it's nice to have" I responded and that was all. A seemingly normal conversation, thankfully to her. And that made me realize just how out of it my brain was getting. Just how immersed I am.
So forgive me if I don't stop myself in the future and we have a really odd conversation like that one could have ended up being. I realize now that my brain isn't totally connected either.
Wednesday, August 4, 2010
speech 101.
Maddy had her first speech therapy session yesterday afternoon. She had developed a cold on Monday night so I was a bit skeptical on just how well it was going to go. She was doing better than Maelle (her twin sister) who was coughing and just a horrible mess. Maddy's was more runny nose than anything else.
Then I had to wake her up from her nap to go to speech...so then I got really skeptical on how cooperative she was going to be.
Then we got there and she was....ALL SMILES. That girl. Never ceases to amaze me. I know she doesn't feel well, just woke up, and she's going to a stranger in a strange room and she's fine. Happy. Good spirited. wow. I don't think I would be so happy about all that myself...but she's obviously not me.
So they play in the room, her and her speech therapist, (I'm starting to wonder if I should change names or get permission to use them....hmmm... for now I'll just call her ST for speech therapist) and Maddy is happily babbling and repeating and being extremely cooperative. She is saying words that I have not heard her say before like "in" and "open". We discuss Maddy for a few minutes while she plays and ST is surprised by the autism pre-diagnosis.
"Wow, she must have a really mild case of it. I have children who are severely autistic and it's quite clear and very hard to reach but she is doing great. I wouldn't have suspected that right away."
Of course, that makes me feel about a ZILLION times better. But as Justin pointed out later, that's the curious thing about autism. One professional can see it in one child so clearly and someone else can see it so mildly and from day to day and even hour to hour, just how severe or not severe, changes. It's not as (I hate to use the word "simple") as it is with cancer where the evidence is clearly there. Either there are cancerous cells or there are not. You can't have cancer one day and the next day not really. You either have it or you don't. Autism is sneaky that way, which I think is why many kids go unnoticed for so long because you can excuse it away for a very long time. "oh she's tired" or "she doesn't really like that game" or "well, I was really bored too so I would be zoning out too" or "Well, if I just played with her more often" or "she's teething that's why she got so upset about ....." and the excuses can go on and on. Not necessarily missed...just explained away. And I can say this because it's the SAME thing I did for months before I called Early Intervention.
And in some ways, I'm still having to point them out for people who just see Happy Maddy and they don't see the other factors at play. They don't see the lack of eye contact because they aren't looking for it. They don't see her rocking and banging her head against the door at night to fall asleep. They don't see toe walking. The lack of cognition. They just see Happy 2 year old Maddy. And GOOD. Because in the same token, I don't want people looking at my kids and then saying "oh she's the autistic one" either.
So I guess I'll just try my best to take the general professional and nonprofessional public's take on my daughter's severity of autism with a grain of salt. Until she isn't meeting criteria, she has autism...regardless of degree. When she doesn't meet criteria (which i have hope that she won't some day) then she won't have autism...regardless of degree.
Her pediatrician called and was very helpful. Back on track with her...the last meeting must have been a bad day...for either or both of us. She agreed to our thoughts on trying Melatonin at night for sleep and a vitamin B6 and Magnesium trial. Her hearing exam is scheduled for Friday. I'm not hopeful of that...she hates having her head touched and ears are worse. I'm guessing they will need to sedate her. At this point, I want it CLEAR that her hearing is fine. I have to eliminate all of the potential possibilities that I can.
Tomorrow we go back to her psychologist (it still sounds very odd to say your child's psychologist...it just does) and hopefully get some groundwork ready for ABA training. I have been asked to make a list of the things that I need help with. I hope to get that done soon. So I will have some concrete things that I need so people who want to help can look at that and see where they fit in. I have been blessed (literally blessed) with an abundance of friends willing and waiting to help me...they just need to know how. And once things really get set into place I will gladly take their help. At this point, I doubt I will say "no" to much.
A little sneak peak of that list is that right now we are hoping to have Maddy's therapy for 2 hours every morning at our church. We will need people to watch Eva and Maelle during that time OR willing to help in Maddy's therapy during that time. Generally speaking from 9am to 11am.
I could go on but my mind is spinning already. I'll be working on the 'support list' and hope to post it soon. I don't think I will have any definites until school starts as many of her therapies are dependent on school - ironic since she isn't in school yet but most of her therapist work in the schools with other kids.
On a happy note, because I have to end things with a happy note...it keeps me going. She has started to say "here you go" when she hands us things. This is a like a double note happy note. First that she is giving us things and she is speaking a 3 word combination. Very amazing. Just like our Maddy.
Then I had to wake her up from her nap to go to speech...so then I got really skeptical on how cooperative she was going to be.
Then we got there and she was....ALL SMILES. That girl. Never ceases to amaze me. I know she doesn't feel well, just woke up, and she's going to a stranger in a strange room and she's fine. Happy. Good spirited. wow. I don't think I would be so happy about all that myself...but she's obviously not me.
So they play in the room, her and her speech therapist, (I'm starting to wonder if I should change names or get permission to use them....hmmm... for now I'll just call her ST for speech therapist) and Maddy is happily babbling and repeating and being extremely cooperative. She is saying words that I have not heard her say before like "in" and "open". We discuss Maddy for a few minutes while she plays and ST is surprised by the autism pre-diagnosis.
"Wow, she must have a really mild case of it. I have children who are severely autistic and it's quite clear and very hard to reach but she is doing great. I wouldn't have suspected that right away."
Of course, that makes me feel about a ZILLION times better. But as Justin pointed out later, that's the curious thing about autism. One professional can see it in one child so clearly and someone else can see it so mildly and from day to day and even hour to hour, just how severe or not severe, changes. It's not as (I hate to use the word "simple") as it is with cancer where the evidence is clearly there. Either there are cancerous cells or there are not. You can't have cancer one day and the next day not really. You either have it or you don't. Autism is sneaky that way, which I think is why many kids go unnoticed for so long because you can excuse it away for a very long time. "oh she's tired" or "she doesn't really like that game" or "well, I was really bored too so I would be zoning out too" or "Well, if I just played with her more often" or "she's teething that's why she got so upset about ....." and the excuses can go on and on. Not necessarily missed...just explained away. And I can say this because it's the SAME thing I did for months before I called Early Intervention.
And in some ways, I'm still having to point them out for people who just see Happy Maddy and they don't see the other factors at play. They don't see the lack of eye contact because they aren't looking for it. They don't see her rocking and banging her head against the door at night to fall asleep. They don't see toe walking. The lack of cognition. They just see Happy 2 year old Maddy. And GOOD. Because in the same token, I don't want people looking at my kids and then saying "oh she's the autistic one" either.
So I guess I'll just try my best to take the general professional and nonprofessional public's take on my daughter's severity of autism with a grain of salt. Until she isn't meeting criteria, she has autism...regardless of degree. When she doesn't meet criteria (which i have hope that she won't some day) then she won't have autism...regardless of degree.
Her pediatrician called and was very helpful. Back on track with her...the last meeting must have been a bad day...for either or both of us. She agreed to our thoughts on trying Melatonin at night for sleep and a vitamin B6 and Magnesium trial. Her hearing exam is scheduled for Friday. I'm not hopeful of that...she hates having her head touched and ears are worse. I'm guessing they will need to sedate her. At this point, I want it CLEAR that her hearing is fine. I have to eliminate all of the potential possibilities that I can.
Tomorrow we go back to her psychologist (it still sounds very odd to say your child's psychologist...it just does) and hopefully get some groundwork ready for ABA training. I have been asked to make a list of the things that I need help with. I hope to get that done soon. So I will have some concrete things that I need so people who want to help can look at that and see where they fit in. I have been blessed (literally blessed) with an abundance of friends willing and waiting to help me...they just need to know how. And once things really get set into place I will gladly take their help. At this point, I doubt I will say "no" to much.
A little sneak peak of that list is that right now we are hoping to have Maddy's therapy for 2 hours every morning at our church. We will need people to watch Eva and Maelle during that time OR willing to help in Maddy's therapy during that time. Generally speaking from 9am to 11am.
I could go on but my mind is spinning already. I'll be working on the 'support list' and hope to post it soon. I don't think I will have any definites until school starts as many of her therapies are dependent on school - ironic since she isn't in school yet but most of her therapist work in the schools with other kids.
On a happy note, because I have to end things with a happy note...it keeps me going. She has started to say "here you go" when she hands us things. This is a like a double note happy note. First that she is giving us things and she is speaking a 3 word combination. Very amazing. Just like our Maddy.
Sunday, August 1, 2010
PT/OT eval.
So her eval was on Friday and I was hoping to have an update that night but obviously that didn't happen. Life has a way of getting in the way of blogging.
Her appointment was at 8am, meaning we had to leave the house by 6:30...I'm sure any parent with a toddler knows how horrifying this is...if they are lucky enough to have a child who sleeps later than that. For whatever reason, she woke up at 5:30 and was ready to go. One blessing down...I didn't have to wake a sleeping baby!
Her PT evaluation went well but it was definitely NOT what I had expected it to be. I was envisioning running and playing on like gym equipment. I have no idea. I have never done anything like this before in my life. That was SO not what they did. She was taken to a room where they took her shoes and socks off and evaluated her legs and feet. Since she is a toe walker (very typical for Autistic kids) they were concerned about her calves and feet. All my kids are toe walkers so I never thought it was a huge deal. Apparently it is. And she is what they call a "W" sitter. This is when a child sits with both knees out and legs out...i think it looks more like an "M" but whatever. I was a "W" sitter and I turned out okay (though I'm sure the argument could be there that since I have had 2 knee surgeries that maybe that had something to do with it...though I can't remember the last time I sat in a W or an M). This is apparently another huge problem as it could hurt her hips and her growth of her femur.
Developmentally wise, she passed all her gross motor skills right on par (gross motor is like running and jumping and the more physical stuff). She aged appropriately, which was no surprise.
The surprise was when they brought in an Orthopedic specialist to evaluate her legs and her feet. He was in the room for about 5 minutes before he turned to the PT person and asked what her diagnosis was...
"preliminary diagnosis of autistic" she responded for me.
He nods. "yes, I was going to say that she appears to be autistic to me"
And I felt like I literally had just been punched in the throat. I guess I have this silly idea that since I don't think she's "that bad" that maybe most people...even medical professionals...wouldn't see how autistic she is. So wrong. That doctor who knew NOTHING of her picked it out like it was staring blatantly at him.
So they discussed her feet. Told me to keep shoes on her at all awake hours of the day to try to eliminate the toe walking. Come back in 6 months and if she isn't any better...they will put braces on her feet to eliminate needing surgery in a few years.
Another blow to the gut. Braces? Wh...wow.
And with that we are whisked away to the OT part of the appointment. OT is fine motor skills...like putting pegs in a peg board or staking blocks or opening a box. I don't think she has any issues here either but again, mom bias.
She aged at 18-22 months but has MANY sensory issues that she will require twice weekly therapy to help sort out and possibly eliminate them.
My head is spinning. The very nice OT lady, Stephanie, tries to explain to me what sensory issues are but I found myself staring at her and nodding more than really retaining any information by this point. I think I was still replaying the ortho guy's words "She appears autistic to me"
What I did gather from her very detailed explanation is that Maddy toe walks because she is hyper sensitive on the bottom of her feet...as well as her hands. She also appears to have some hearing sensory issues. And she rocks (or self stimulates) when she is either not stimulated enough or too stimulated with what is going on around her...a sensory issue. Because her body's senses don't work like a typical person's senses. So while we can take in a busy room of kids playing, her body goes into overload and begins to rock as a way of processing. Or if she is in a room by herself and it is boring...her body is compensating by rocking instead of finding other ways to engage.
Makes sense. Sure. Okay. She gave us a brushing technique to use on her arms and legs to get her body used to touch and desensitize as well as calm her.
Now we wait for our insurance to approve her OT therapy twice a week. We are waiting for our insurance to approve her speech therapy twice a week. We are in a hurry up and wait place.
There is nothing more frustrating than to hear "NOW IS THE TIME" but wait....we need approval first.
Overall, we have been seeing dramatic improvements and also some decline as well. She is getting better at her eye contact and physical contact. She is playing with her sisters more. She is answering to her name. She is signing and saying more words.
She is also having HUGE behavioral issues. She is hitting and fighting with Maelle. She is fighting sleep. She is having MORE tantrums than she ever has in her life. I'm guessing this is a result of our INTRUSION into her world and pulling her out. I am imagining that this will get worse the deeper we go and the more we demand of her. But in turn, will get better in time. I hope.
One final word before I go...nap time is over...if you are going to read anything on autism, read this book first. It's called "Let Me Hear Your Voice" by Catherine Maurice. She is a mother of 3, two of her kids were autistic but have since been recovered. I feel like every emotion she wrote in that book was a mirror of mine. Please read it. And you can read and feel where we are. You can buy it on amazon for like $10 or I'm sure if you live near a major bookstore (don't laugh too hard...we don't!), I'm sure they have it.
Her appointment was at 8am, meaning we had to leave the house by 6:30...I'm sure any parent with a toddler knows how horrifying this is...if they are lucky enough to have a child who sleeps later than that. For whatever reason, she woke up at 5:30 and was ready to go. One blessing down...I didn't have to wake a sleeping baby!
Her PT evaluation went well but it was definitely NOT what I had expected it to be. I was envisioning running and playing on like gym equipment. I have no idea. I have never done anything like this before in my life. That was SO not what they did. She was taken to a room where they took her shoes and socks off and evaluated her legs and feet. Since she is a toe walker (very typical for Autistic kids) they were concerned about her calves and feet. All my kids are toe walkers so I never thought it was a huge deal. Apparently it is. And she is what they call a "W" sitter. This is when a child sits with both knees out and legs out...i think it looks more like an "M" but whatever. I was a "W" sitter and I turned out okay (though I'm sure the argument could be there that since I have had 2 knee surgeries that maybe that had something to do with it...though I can't remember the last time I sat in a W or an M). This is apparently another huge problem as it could hurt her hips and her growth of her femur.
Developmentally wise, she passed all her gross motor skills right on par (gross motor is like running and jumping and the more physical stuff). She aged appropriately, which was no surprise.
The surprise was when they brought in an Orthopedic specialist to evaluate her legs and her feet. He was in the room for about 5 minutes before he turned to the PT person and asked what her diagnosis was...
"preliminary diagnosis of autistic" she responded for me.
He nods. "yes, I was going to say that she appears to be autistic to me"
And I felt like I literally had just been punched in the throat. I guess I have this silly idea that since I don't think she's "that bad" that maybe most people...even medical professionals...wouldn't see how autistic she is. So wrong. That doctor who knew NOTHING of her picked it out like it was staring blatantly at him.
So they discussed her feet. Told me to keep shoes on her at all awake hours of the day to try to eliminate the toe walking. Come back in 6 months and if she isn't any better...they will put braces on her feet to eliminate needing surgery in a few years.
Another blow to the gut. Braces? Wh...wow.
And with that we are whisked away to the OT part of the appointment. OT is fine motor skills...like putting pegs in a peg board or staking blocks or opening a box. I don't think she has any issues here either but again, mom bias.
She aged at 18-22 months but has MANY sensory issues that she will require twice weekly therapy to help sort out and possibly eliminate them.
My head is spinning. The very nice OT lady, Stephanie, tries to explain to me what sensory issues are but I found myself staring at her and nodding more than really retaining any information by this point. I think I was still replaying the ortho guy's words "She appears autistic to me"
What I did gather from her very detailed explanation is that Maddy toe walks because she is hyper sensitive on the bottom of her feet...as well as her hands. She also appears to have some hearing sensory issues. And she rocks (or self stimulates) when she is either not stimulated enough or too stimulated with what is going on around her...a sensory issue. Because her body's senses don't work like a typical person's senses. So while we can take in a busy room of kids playing, her body goes into overload and begins to rock as a way of processing. Or if she is in a room by herself and it is boring...her body is compensating by rocking instead of finding other ways to engage.
Makes sense. Sure. Okay. She gave us a brushing technique to use on her arms and legs to get her body used to touch and desensitize as well as calm her.
Now we wait for our insurance to approve her OT therapy twice a week. We are waiting for our insurance to approve her speech therapy twice a week. We are in a hurry up and wait place.
There is nothing more frustrating than to hear "NOW IS THE TIME" but wait....we need approval first.
Overall, we have been seeing dramatic improvements and also some decline as well. She is getting better at her eye contact and physical contact. She is playing with her sisters more. She is answering to her name. She is signing and saying more words.
She is also having HUGE behavioral issues. She is hitting and fighting with Maelle. She is fighting sleep. She is having MORE tantrums than she ever has in her life. I'm guessing this is a result of our INTRUSION into her world and pulling her out. I am imagining that this will get worse the deeper we go and the more we demand of her. But in turn, will get better in time. I hope.
One final word before I go...nap time is over...if you are going to read anything on autism, read this book first. It's called "Let Me Hear Your Voice" by Catherine Maurice. She is a mother of 3, two of her kids were autistic but have since been recovered. I feel like every emotion she wrote in that book was a mirror of mine. Please read it. And you can read and feel where we are. You can buy it on amazon for like $10 or I'm sure if you live near a major bookstore (don't laugh too hard...we don't!), I'm sure they have it.
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