Tuesday, 26 January 2016

Nate- development can lead to new challenges

I haven't talked about Nate in awhile.  He has been doing very well.  He has been in ABA consistently for about 10 months and in complete contrast to our experience with Jack, he has had the same tech the entire time, who is amazing.

And good things are happening- he can repeat an approximation of any word you request.  He can repeat actions, he can do many things with verbal prompts.  There is so much progress that it's hard to get into- which is an amazing thing.  

His level of awareness is much higher than it was- this brings some new challenges for our family- for the first time, we are seeing sensory sensitivities in our usually "seeking" child- he covers his ears now with loud noises, he doesn't like the snow any more.  His tech and I have committed the cardinal sin of cheering too lousy when he does something well!! This is something he never used to notice- it's a positive- but I imagine it makes his life harder.  He also wants MORE input in other ways- especially visually- he will try to grab his iPad and his brothers and put on two movies simultaneously.  Or (and this one in my opinion just shows he is a genius) he will stand on a chair and watch his iPad in the mirror.  Not even a little kidding.  

His verbal communication and note I say communication and not speech, because they are very different entities, has been the slowest to develop.  And unfortunately that lag along with increased awareness is causing him more frustration than he has expressed in the past.  He is not content to accept the status quo, i.e. the same food he has always liked- he wants to keep trying until we get it right-but often loses it before we get there.  But he is trying to do it verbally, and it's just so difficult for him- he can ask for something to eat, and then when I say what do you want? He says "iPad".  And he may even be holding it.  It's just his "default" response.    It's so frustrating for both of us.  And yet it's encouraging at the same time, if that makes sense 

I am finding myself speaking to him on a different level- I often wonder if he thinks I am talking down to him.  I can tell by his actions and reactions that he has so much to say.  And yes, we have tried a device in the past, but it was clear he was not ready.  And he has always been in that gray area of having some speech and really TRYING to speak.  Of course we don't want to discourage that!  But at the same time I want him to be able to get out what he needs.  He is doing amazing with his adapted spelling in school, has mastered matching most of his letters both lower and upper case in ABA.  When I read to him I point to the words, I have the closed captioning on when he watches a show because I have the sense that letters make sense to him- I could see him learning to read just by exposure.  And I am open to a device for him- because of his continued speech efforts, I am not willing to call him nonverbal, and I will never give up on verbal communication- but I want him to be able to express himself- and if a device is the bridge that he needs, so be it.  

His building frustration reminds me that we are dealing with a very whole, very intelligent little boy who probably wants to throw his hands up and tell us all where to go many times each day.  I can't even begin to imagine how annoying we must be when we just don't get it.  

We are getting there- man is this a curvy, bumpy ride but this child teaches me something new every single day.  And my critical thinking skills and nonverbal communication?  Through the roof!


  1. My son went through this when he started to become more aware he started to seek the visual stimulation. He also covers his ears for unexpected noise or stimulation. It was suggested to us to add a stimulant at this stage. We were told that the stimulant will do all of the work so he can just relax and be. We added focalin XR and has been a game changer. I know that you know way more about medicine than I do. I just wanted to share because our son had such a similar experience.

  2. So happy you are seeing gains with Nate! very exciting! Key is to never give up and I know you never will. We all know "he's in there" and he just wants to as you said....to go off on everyone......one day I'm sure our boys will do just that.
    You should hear the stuff B plays over and over again..... he too can watch two different shows on two different devices and in different languages.
    heck for all I know they speak another language LOL but they understand English.
    Proud of you as always. You are my Hero! xoxoxo

  3. Since you are now used to ABA, have you tried PECS (Picture Exchange Communication System) ? It is entirely based on the principles of ABA. It is much more than pointing at pictures. Quite often in increases the desire to communicate and speech follows and then are done with PECS. This was our case, after 4 months of PECS, speech emerged. Can I prove that PECS helped, no I cannot, maybe just a happy coincidence. I am told it happens quite often, but nobody is going to guarantee it. PECS is actually quite fun for the child and parents, but is no good if it is just for school or therapy. The parents have to use it.

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