Thursday, December 2, 2010

Autism Testing

So once again life is crazy and I am not keeping up. So much is happening I almost don't know how far I should go back, so for now, I'm not.

We finally were able to have Nathanial and Ethan tested at the Mercy Autism Center a month ago. The good news is that niether one of them was found to have autism. Ethan was iffy anyway and we weren't sure on him, so that was understandable. Nathanial was surprising - and still is. He met criteria for the diagnosis in all areas, except social. When the examiner was speaking with him, he supposedly asked what her children were for Halloween. That showed an interest in her and her family AND him trying to continue the conversation. Otherwise, even socially he met it. Since then we still worry about Nathanial and just have no idea what is going on with him, really. Because although much of it is explained through the other "issues," much of it is not. I suppose time will tell. The three watching the evaluation said they never saw any hand flapping (which is what I reported) and when the examiner came in, they said that to her. She said, oh, no, he did it....he was probably out of range for the window, but it would be on the video. And, sure enough, it was. He also has the very odd speech, high, high pitched voice, echolalia, etc, but he asked that one question.

That, however, does not mean that they do not have a whole host of other issues to work through. They both have a sensory integration disorder. Ethan is incredibly sensory defensive (meaning he seeks sensory input) while Nathanial is more sensory sensitive (he avoids it) most of the time, while others being sensory defensive. I had no idea you could be both, so that was good to know. They also have an auditory processing disorder which is affecting a lot. They both have a "severe and significant" language delay. Finally, they also both have motor delays.

We were told that their issues are being caused by a combination of being preemies (even if they were near term), multiplicity, pregnancy complications and high risk pregnancy, labor/delivery complications, low birth weight (more for Nathanial), severe preeclampsia - and well, you get the idea. All of those things are known factors for many of the things we are dealing with and when you combine them, you rather get an almost perfect storm. But that is also very positive - because it means that much of this, with intensive therapy, they may outgrow.

An auditory processing disorder is that when they are hearing things spoken to them, it gets jumbled and they can't decifer it quickly enough to respond. By the time they do get it, it's too late, the conversation has moved along. They then also have difficulty even expressing what they need or want so all of that adds to the frustration.

Most of Ethan's aggression and anger and extreme OCD tendency's are coming from not understanding and not being understood. He's trying to control whatever part of his world that he can. Ethan's language skills are at a 2 year, 4 month old level and he is only understood by unfamiliar listeners 50% of the time which puts him in the 2nd percentile. No wonder he's frustrated!

Nathanial is understood by an unfamiliar listener 75% of the time, but his overall language skills are much more severe than Ethan. He is only at a 1 year, 5 month level and is lower than the 2nd percentile of his same age peers. They did immediately see and recognize the giggly, out of control behavior as being a stress response and not just something "cute." This has been hard for us because noone else really has and it breaks our hearts when he gets all giggly and squirrely. And he is a very happy little boy, so it can be hard for others to recognize the difference between stressed out giddy and happy. The examiner said she was glad I had warned her, because then she knew to watch for it. When he was trying to do things he couldn't do, he would get a split second panicked look and then just go into his giddy, hyper, running all around response. If you aren't looking at his face for the panic look, you are going to completely miss it.

 Now we move forward. We've been making and putting up story boards all over the house to help them see their schedules and understand the familiar. They need lots of visuals to get through their day. Their teacher is working hard on also doing many visuals at school - more than she already has. We will work hard on them understanding their schedules through visuals until after the holidays and then we will start to change it up a bit (by putting in a "change" card also so they see that). This way, eventually, they will learn to tolerate change a little better. Then we also change the direction of their speech therapy - which is what I have been trying desperately to do for a while. They also have access to the occupational therapist at school and she will be working with their teacher to make things even easier in the classroom.

The best news was that I can homeschool them and this may actually be an excellent option for them. We've prayed about it and are still praying about it. I have been very convicted that I should be homeschooling my children (and am going to be starting Austin in January), so this is positive for me. We are still praying over it and will continue to pray diligently so that we are within the Lord's will and not our own.


Anonymous said...

I am praying for you in this too. Love to you and all of your boys!


Anonymous said...

. . . and Hannah!


Kate@SurroundedByPenises said...

Kudos to you for advocating for your little men. They're lucky to have such an amazing and loving mama! Best of luck with everything <3