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Sunday, February 12, 2012

post diagnosis

Most of my reason for these posts about our journey with Noé is that I am hoping that perhaps another momma or pop with a child similar to our little man might stumble onto this page and find some direction or validation.

Noé received Occupational Therapy sessions for about 2.5 months. During that time, he went through different screenings which helped the therapist know which exercises to do with him. His therapist worked with things to help overcome his fears of falling, his need for control. She taught us more about how he processes the world and gave us tools that greatly helped our daily living.

In December, Noé went in for a screening for autism. This test has been the one that I have been wondering about--really since he was maybe 3 months old. I was curious to see how the diagnosis would come out, now that he had made so much progress. Maybe they wouldn't find anything? If they would have seen him a year ago...

Long story short, Noé was diagnosed with "Atypical Autism". The way it was explained to me is that he has enough symptoms indicating autism to put him into the circle of autism--but not enough to label him autistic. It could also be thought of in percentages--like maybe he could be 20% autistic, as opposed to 100%. He scored a 5 in his list of symptoms; 6 would have classified him as "classically autistic".

His overall developmental score put him at 2 years, 10 months... which is nearly a year younger than his chronological age.

When the therapists conducting the screening told me their results, they all seemed to lean in around the table studying me. It was as if they were waiting for me to fall off my chair in a fit. They asked me how I felt about what they were saying. I wondered if I was under-reacting--but I just said, "If I was asked to describe him, that's exactly what I would have said."

In the weeks following the diagnosis, I have continued to wonder about my reaction when many friends ask how I feel about it. It may be because I have lived with Noé for the last 3 1/2 years. I know how he is. It wasn't a shock.

Actually, the diagnosis has brought to me a huge sense of validation. It makes me sit back and say, "Ok! So there is something going on. It's not just me being a bad mom. It's not just me over-reacting. It's not my fault."

It has also given me a shot in the arm of mommy confidence. What I have been saying along has been confirmed by unbiased professionals-- at a time in Noé's life when he is the best he's ever been. If I could take this baby with these developmental and communication delays, these social and sensory difficulties and mother him in such a way that he is actually getting better, then I must be a pretty good momma! Sorry if it seems like I am patting myself on the back, but if you could have seen our struggles with Noé in his first years, you'd know why any form of affirmation comes as a shock.

In giving their diagnosis, the therapists also said that typically, with support, a child with Noé's delays can be fully "adaptable" by high school age. I can't explain what it felt like to have a realistic time-line. There were days I would lie on our bed, staring at the ceiling. Wondering what the future held for us and Noé. Wondering if I could dream of things like independent living and a social circle for him.

I also have often wondered, in our darkest moments, "Why us? What did we do wrong for us to have a child with these issues?" I wondered if I had done something wrong. If I was doing something wrong. After the diagnosis, while driving from point A to point B one day, I heard God speaking to me. While stopped at a stop sign, God said, "I chose to give Noah to your family because I knew that you would love him and be what he needed." Talk about a change of focus! Tears sprung to my eyes as I gained a new perspective on God's sovereignty and His love for us. Noah is a gift. Noah is God's way of saying to Rey and I, "You can do it! I chose you to do it."

The other "nice" thing about the diagnosis is that it help people to understand Noé a little more--or, maybe just give him a little more room. And that is really all he wants most of the time--a little more room. It also makes available a lot more help--like the speech and occupational therapy that he is getting at his Pre-K.

I wanted to end this post by sharing some things that are really working in our home.

The biggest breakthrough? A visual schedule! It as blown us away how much this means to Noé: Knowing what is happening ahead of time. I have always verbally walked him through things before they happened--hoping it would help to calm him. When I say always, I mean from like 4 months old. "Noé, we are going to Grandma's house. Your aunt and uncles are going to be there. You are going to see horses and cows. We will be happy. It will be fun!" It seemed to calm him to some extent. But, since we've learned that his visual discrimination is much more advanced than his ability to make sense of what he hears--it makes sense that SEEING it is so much more effective for him. Noé can be spiraling out of control, and I can whip out his schedule, and he calms right down. He can tell me he doesn't have to go potty, and if I put it up on the schedule--he'll automatically tell me he has to go. It is, in a word, incredible.

The therapist also showed us how to use pressure on his joints at times to help him calm down, relax or focus. I often do this as I am praying with him before he goes to sleep. He really seems to enjoy it. At times, I will see he is getting a little overwhelmed in a busy social setting, and I might take him to the side and lay him on his back. It may appear that I am just playing with him, but I am putting pressure on his joints and talking to him which seems to help him "center himself" again.

It is great, because we are getting into a good enough rhythm that I can read when he is almost to the boiling point. It may appear to others that he is "fine", but I can feel him getting tense and fragile. So, I generally just make him "break away" with me. I take him aside and we read together. Or we walk around outside. Or we simply just leave. The point is, he may not even think he's ready, but I can see it coming. Almost always, that sense is confirmed if I ignore it.

I've also learned that it's ok to let him eat in the car when socializing. Very rarely can he get focused enough to eat well while having all kinds of fun at a friend's house... but if he doesn't eat he generally will end up with a behavioral problem because he generally isn't very in tune with what his body needs. He may end up being horrible to play with because he has an empty stomach. But, if I haven't been paying attention, I might not realize it's that--because he may have a plate full of his favorite food sitting next to him, but he's not focused enough to eat it. If he eats in the car, he'll finish it all... and be a wonderfully behaved little man.

Also, numbers work. If I tell Noé we have to get 3 more things at the grocery store, he can take it. Saying, "I'm almost done," doesn't help. If I put ten minutes on the timer, Noah complies beautifully (usually!). If I say we can do something 5 more times and then we are done-- 9 times out of ten, he stops when those 5 times are over. If I ask Noé to help me count something, it helps him to focus and calm down. Lovely.

When Noé looses control, it is a sad thing. Thankfully, the times it happens are fewer and fewer. But, whatever the thing is that set off the attack usually becomes so big in his eyes that it is hard to walk him past it. He just keeps getting more upset over that same thing and often it's a thing that can't (or I've decided won't) be changed.

It can be like helping Noé find the ledge in the deep end of the swimming pool. When he's lost in his storm, I can feel like I am not communicating with him. He isn't listening, or hearing. He's just focused on the problem. But, as he comes back, I can see the awareness come back into his eyes, the tension releasing from his shoulders and he, step-by-step, calms, gains control, comes back into his body. His eyes tell me all. Cloudy, distant, stormy, troubled when he is gone. Sparkling, relaxed, eager, confident when he is there.

Today we had a small storm because some trucks he had lined up in a certain pattern were moved. It threatened to ruin his day. Since I now know the why of this storm, I can help walk him through it--as opposed to treating it as a discipline issue. I explained to him that his friends didn't mean to make him sad. That that pattern of trucks was the most amazing thing I've ever seen. That he did it so well that everyone there loved it. That I was proud of him for working so hard. And that he had done such a good job of being a friend. I told him I knew his teacher would be really glad to hear that he had been practicing patterns.

At first, Noah wasn't hearing me. But, at a certain point, his cries calmed to whimpers as he focused on what I was saying. When he began to snuggle into me, I asked him to look at me and help me "smell flowers and blow bubbles". In other words, I helped Noah to breathe deeply. Another thing that works. So, Noé and I looked at each other and very seriously began smelling imaginary flowers and blowing imaginary bubble. After doing that maybe 7 times, I saw Noé was back and I began making plans with him. "Guess what, Noé? I saw that there were a lot of cars outside! Can you come with me and help me count them?" "Ok..."

So, yes. Maybe the biggest thing that works? Know when to ignore the behavior and address the cause. And, that is what therapy has given me. A toolbox of things to try when things spin out of control.

6 comments:

  1. Very nicely said, Liz! It is so amazing to me to read some of this stuff because I have always seen such a good side of Noah while he's at our house that it's tough for me to even imagine him having meltdowns! :) But you're right in that you are doing a GREAT job as his momma, and I've always seen you looking out for his best interests!

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    1. Aw, thanks Ruth. I think you see Noah's happy side because he has such a good friend in C! :)

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  2. Liz, you are such an amazing woman and mother. I just cried and cried reading this. I'm so happy to hear about all your good news. So great for Noah! This line especially just had me bawling, because it is SO, SO, SO, SO true!

    "If I could take this baby with these developmental and communication delays, these social and sensory difficulties and mother him in such a way that he is actually getting better, then I must be a pretty good momma!"

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    1. Oh, Ellen. You made MY eyes water when I read this. So sweet. THANKS! :)

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  3. Thanks so much for letting us in on Noah's story. I had no idea, of course, before you started writing about this journey. I'm glad to have a better picture of what your life is like now. I have a cousin who is autistic so I'm always interested in personal stories related to the disorder.

    Noah is very, very blessed to have you as his mama!

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    1. Oh, thanks Sarah! I know your cousin is lucky to have you in her family! :) Thanks for coming along with us on the journey...

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