We apologize for the intermission. We have all been consumed with our daily routines of school, extracurricular activities, family and friend events, deaf events and autism alike. I am a firm believer of exposing him to things that identify with his uniqueness. I am the pain in the butt that always tests his limits and flexibility by making him try and do new things. I refuse to allow this guy to use the excuse of his disability and say he can’t because he can.
As for mom, it can clearly be overwhelming some days (most days) when I am constantly puzzle piecing my guy and trying to find the best off the fly supports to get him through the day. Most times, I just don’t know what to do, other times I lose my patience, other times, I cry with him.
I haven’t seen a full on meltdown since 2012 – early 2013, when I brought him to a beach in CA a good 2 exits away from our home. He hated the feel and texture of sand and I refused to let that defeat him and not be able to enjoy the beach. 2 weeks straight I brought him until his tears subsided and he grew the flexibility and tolerance to accept sand is what it is and it wasn’t as bad.
He had one most recently. Over an iPad game that continued to freeze on him. But what he did was throw the iPad and almost hurt someone which is inexcusable. I took the iPad away as a punishment and told him to cool off in the room and he lost all control. It took over an hour and a lot of hugs and holding him even if he didn’t want them. It can be a challenge when disciplining a child but especially a child w autism when they don’t know better. This tantrum was different though. He feels extreme emotions and this time he was able to tell me that he, “doesn’t like(love) himself”, “wants to be alone”, “feels bad,”. In a bigger perspective, it is wonderful he is able to express his feelings but his feelings are very strong and made me wonder if that’s how he sees himself in his own eyes. We cried together and I tried to hold back my tears but I couldn’t. After he settled down for the night. I sat there and cried some more. I can’t do anything to help him feel differently about himself. I give him all the love and affection despite many rejections and a zero kiss policy that kills me inside everyday. What am I to do. The only thing that hasn’t changed is his social pragmatics. He has and is familiar with his classmates but he has no meaningful conversations, exchange of conversations, etc. in one of his assessments, it states, ‘he seems interested in playing but doesn’t know how or have the vernacular to exchange in a conversation ‘, and by that time a child who seems interested in playing with him has moved on. That killed me more than any report that confirmed any of his diagnoses. I was able to push through in life with relationships of family but most importantly, friends and the thought that he would not have friends that get him and are patient and kind, kills me to even fathom. I refuse this to be him and have a solitary life. After all, deafness have social communication issues or identity issues because of language barriers and other issues. Throwing autism and adhd into that trifecta and it is tough. I refuse that thought and until he knows how to advocate himself, I’ll keep doing it for him and finding ways to help him.
Enjoy the photos of our winter activities as well as a brief description of each. It was a brutal east coast winter. It’s almost April and still a bit brisk, we are eagerly anticipating warmer weather and outdoor fun.
Former trifecta NOW HEPTAchild...and counting? 