The day Alden was officially diagnosed with autism was tough. We already knew in our hearts, but something about seeing it in black and white cut pretty deep. Since then we have learned and grown so much. Alden has made great strides doing ABA therapy daily, but for the insurance to continue coverage we had to go through the diagnosis process all over again. We were chasing that golden ticket.
Jumping through hoops is a skill you learn fairly early on in the autism journey. I wonder if that skill is something I could include on a resume? I think it should be, just saying. I was so anxious about going through this process. There was no part of me that was worried he wouldn't get the golden ticket, he obviously still has autism. Imagine my surprise should my child be the first to 'outgrow' autism! My anxiety came from the emotional roller coaster that comes with checking box after box that shows every deficit in your child's development. Watching him go through testing, where you know the scribblings on the testers clipboard isn't mentioning how happy and loving your child is. This whole process is to point out every thing 'wrong' with your child. I understand the purpose, but it doesn't make it any easier.
After all the appointments and all the testing, I finally got the conference call to go over the results. Drum roll please.....he has autism! We got the golden ticket and further authorization for Alden to continues his ABA therapy. This is the good news. There was some new details added to his diagnosis however, that knocked me on my butt all over again. His new official diagnosis is Severe ASD and moderate/severe intellectual impairment. Read that sentence again and pretend this will be the header on all official documents describing your child. Takes the wind right outta your sails right. Sure, I can step back and recognize that those added words haven't changed a thing about my sweet boy. He's the exact same amazing kid as he was before that phone call. Still I needed an hour or so to cry it out before I could pick myself back up.
That day, my autsim super momma cape slipped. Some days are harder than others. Sometimes you can take it all in stride and laugh at the quirks. Other days you just don't have the strength. So, you take your glass of wine with you in the shower, sit on the floor and cry it out while you pray for God to grant you an extra ounce of strength to make it through the night.
My advice to others who may find themselves checking those boxes or crying over a report...
Number one, take that moment. We have to be strong all the time. People will try to tell you to keep your head up and all the reasons you shouldn't be sad. They mean well, and in a way they are right. BUT you get to be sad, you get to have a moment where you DON'T have to hold it all together. That doesn't make you weak or a negative nancy....its makes you human. The trick is, not getting stuck there. After you have your moment, you have to take that step back and make your own list. The list the doctors, teachers, and therapists aren't paid to track. The list of amazing qualities that DO define your child. That piece of paper will follow your child for the rest of their life, but it isn't who they are.
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