Last Sunday I packed 2 of my kids up in the car and drove 3 hours away to do something that’s needed to be done for a very long time. I’ve blogged many times about my concerns with Jayden and autism. I’ve blogged about taking him out of school, because he’s socially awkward and was being picked on.
I had an idea of what to expect. 10 hours at a facility meeting with specialist after specialist searching for some sort of an answer for what has been going on with my son for years.
I walked in expecting to hear the words that no mother wants to hear. The words of “Yes, your son is autistic. Yes, this is something he will live with forever.”
I didn’t hear those words.
I heard something equally heart breaking, but I didn’t hear the word autistic. I heard that my son has a communication disorder. I heard that my son has ADHD. I heard that my son has Sensory Processing Disorder. But I didn’t hear the words autistic.
Jayden has a communication/language disorder called Semantic Pragmatic Disorder. Here is a snippit from Wikipedia to give you an idea of what this disorder entails:
Pragmatic language impairment (PLI) is an impairment in understanding pragmatic areas of language. This type of impairment was previously called semantic-pragmatic disorder(SPD). Pragmatic language impairments are related to autism and Asperger syndrome. People with these impairments have special challenges with the semantic aspect of language (the meaning of what is being said) and the pragmatics of language (using language appropriately in social situations).
I feel like a failure of a parent. I always knew that something was different…. not by any means in a bad way, but just special. I never knew the extent that Jayden struggled to understand at times what people meant. When he said “I don’t understand” he really didn’t understand. Why didn’t I pursue this sooner?
When we walked out of that all day appointment I looked at his sweet little face and I swear my love for him grew even more…. which is something I never thought was possible. This innocent, sweet little guy was made in a way that he can’t be tainted by this cruel world. He truly doesn’t “get” a lot of things. He needs his mommy in ways I never knew he needed me. And my heart is aching in ways I never knew it could.
He doesn’t “get” it when kids joke around with him. He’s so literal that his feelings get hurt and I’ve always wanted to just protect him and keep him close to me. This whole thing makes me feel THAT much better about my decision to homeschool him. I can’t fathom throwing him out on the recess field now and expecting him to understand what the kids are saying and doing to him, when he LITERALLY can’t.
How did I not know this? How did I not have a light bulb go off after the millionth time of him saying, “I just don’t understand.” I thought it was Jayden trying to get out of things or his sensory overload taking place….. I never thought that he was struggling to understand the meaning of the things I was saying. This picture I took of him the other night which was him not understanding and getting his feelings hurt. Talk about heart breaking. And even more heartbreaking is the way my heart feels for every time I got annoyed or frustrated at him for not “getting it”.
I’m taking a deep breath and being thankful that at least I did pursue it. We know what we’re working with and now we start therapy. We’re going to get him into an Occupational Therapist to work with him on the Sensory issues and a Speech Therapist to work with him on the language disorder. With the ADHD I’m currently experimenting with a drink called {Celsius}, which has ZERO sugar and has caffeine and B vitamins. AND it’s working! I’m noticing that when he drinks the drink before it’s time for school work that he’s MUCH more focused!!
I have to move on from here on out and not dwell too much on what I should have done. I guess the bottom line is at least I finally figured it out right? I don’t know if this is even possible, but I swear I walked out of that appointment loving my little buddy even more.