For this Wishful Wednesday, I had a pretty good post about wishing people wouldn’t lie. I was alost done and realized it was time for me to take Jamie to his yearly neurology appointment. So, I saved the document, got Jamie ready to go and we took off down the road. Little did I know that post was about to be thrown to the wayside for a newer wishful post. A new diagnosis was on our horizon.
Years ago, before Jamie’s diagnosis of Cerebral Palsy and yearly afterward, we would ask our doctors if Jamie had autism. He seemed to have some of the tendencies of autism: the non-verbal part of it, the bypassing milestones (some still haven’t been reached), the sensory issues, some of the “tics”, among other things. We were always told, “No, he looks right at you and responds in the best way he can. Plus, he loves to be held.” Now, I don’t have to tell you guys that the signs I listed as Jamie’s symptoms are not always signs of autism. And I also don’t have to tell you that the doctors’ answers aren’t always true, either.
Today, when we were visiting the neurologist Jamie started stimming. He pulls his arm to the point of almost hyperextending his elbow, and then sort of rocks with it. He then bites his shirt sleeve, and looks at his arm and then back at his hand. It’s hard to describe the way he does it, but it’s usually in the same order over and over. The neuro saw all of this and told me it wasn’t a seizure, and that the only things he could think of that might help this behavior are therapy and drugs. I “just said no” to the drugs and we talked about therapy. In the process, I told him about how I’ve been trying to get a therapist to help us for months-calling numerous places that tell me that because of our Anthem they won’t help us. Apparently, the story is that Anthem won’t pay without an autism diagnosis. Therapists won’t take us because Jamie has Anthem and Medicaid and they seem to think they won’t get paid, even though I’ve told them I would pay out of pocket and would be happy to sign something stating that. So, I asked our doctor again about the autism diagnosis. Here’s what he said to me: Jamie is on the autism spectrum, obviously. (How the hell would I know that, when all of my docs have assured me the opposite, including him!) I asked him if he would put that in Jamie’s chart so that we can use it to get therapies for Jamie. He said he would. He went on to explain that because Jamie has cerebral palsy, his autism is considered secondary and therefor not a diagnosis that’s usually used. Once a child has a primary diagnosis, he said the medical community doesn’t necessarily diagnose autism because they have a reason for all of the neurological issues, even though cerebral palsy is a sort of blanket term.
My wish for Wishful Wednesday is that I wish someone would’ve told me this sooner. That someone would’ve said to all my questions about autism, “Yes, Jamie is on the spectrum. Yes, he has autism.” It may have devastated me years ago, just like it did when we got the cerebral palsy diagnosis. We weren’t really surprised by it at all, we just didn’t want to face it. Maybe we would’ve been able to get more therapies for him. Instead of fighting with insurances over the last 10 years to pay for the therapies and doctor visits, hospital stays, and surgeries, etc, we could have been focused on the actual therapies, doctor visits, hospital stays, etc. We could have gotten him more therapies that may have put him further along than he is right now. We could’ve gotten early intervention for the things that really matter instead of the things they thought would matter due to his cerebral palsy diagnosis.
This new diagnosis opens a lot more doors for us. It’s not scary at all. I just wish someone, some doctor, would have answered my questions when I kept asking them all those years ago. Today, I’m excited that we have an additional diagnosis. I’m not sure how exactly this will change anything, but I’m willing to find out more. For those in the autism community, I hope you’ll help us find our way.
Does your child have a diagnosis you dreaded or were thankful for?