We’ve been in the process of applying for Medicaid lately. And by lately I mean since the fall with no decisions forth coming.
When Charlie was first diagnosed at age 4 with Aspergers the social worker at the developmental pediatrician’s office told us we could apply if we wanted but that we would likely get denied because Charlie’s IQ is too high and he has no deficits in daily living skills.
I didn’t think much of it at the time. I took it at face value and figured we were lucky to have a little less paperwork added to our lives. At the time he was still preschool age and we were getting all the school and home services we could handle paid through the school district, Charlie was doing great, and I couldn’t see any reason to push for more.
Then kindergarten happened and all hell broke loose. We had no in home services and no idea what to do. We called the developmental pediatrician’s office and they told us about the autism crisis team. This is a team of professionals, trained specifically in autism, who can come into your home, work out a behavioral intervention plan, offer additional respite, and liaison with the school about issues there.
This sounded perfect and with relief I called them to get them out to our house as soon as possible. They informed me they were only available to children with Medicaid. Could we pay cash, I asked. No.
They referred us to the mental health crisis team. They did come out. We told them about Charlie’s violent behavior, how we feared for our other son’s safety, how we were exhausted from keeping a 24 hour watch on him.
They agreed we qualified for crisis services and then offered to take him for a 72 hour psychiatric hold.
He’s only 5 I told them. He is not altered or mentally ill. He is autistic and afraid and acting out his fears in the best way he can. He needs help feeling safe again. How can taking him away from us for 3 days with a bunch of strangers possibly help him? That would destroy him for good.
We called them, they said, and that was what they could offer us. Did we want it or not?
No thanks. We’ll figure it out.
After several more, seemingly hopeless weeks like this, we started touring apartments in the area, thinking we could take turns living there with Tommy while someone stayed with Charlie at home. We didn’t know what else to do. But, luckily before we could finalize these plans Charlie began to show improvements and a slow return to his former self.
So, we immediately applied for Medicaid, despite the idea by most professionals assisting us that we had no chance of getting it. Our service coordinator told us we fell into that group in the middle that no one knew how to handle. Mental heath couldn’t service us correctly because his behavioral troubles came from his developmental disability and the Department of Disability couldn’t help us because he was not developmentally delayed enough and his problems were only behavioral.
This is where we live. In this middle ground where high and low functioning labels cause us more harm than good.
I was at a local autism conference recently, waiting in the lobby during a break. The women sitting near me were discussing the programs their kids were in and what therapies were used. They turned to me, politely, and asked about my child.
I told them about him and how well he was doing lately. I told them about his program and how DIR and Michelle Garcia Winner were the main philosophies they used.
Michelle Garcia Winner? one of them said. That’s really advanced stuff, I guess your son must be really high functioning, I wish we had those high functioning problems, we’re just trying to get ours out of diapers.
I wanted to tell them how deceptive the idea of high functioning is with him. How when he is rated in social/emotional development he is severely delayed and this causes him all kinds of difficulties.
But being the good NT that I am, I understood from her look and tone of voice that since my son was highly verbal and toileting and dressing himself that I had no idea what real autism was like. That she would trade anything for her child to be where mine is.
There is so much pain and so much truth in this feeling and I don’t know how to answer it. These are the moments where I am lost. I simply fell silent and listened, which is what I do most often, because I don’t want to cause anyone pain or stir up controversy.
But I also don’t want to feel like I have to give a laundry list of my son’s deficits to earn my place at the table. I’ve accepted that I have to do that to get him services, but I don’t want to have to do it to find community. It’s soul sucking to play that game and I need to dwell on his strengths for his good and mine.
So, I am asking, in all earnestness, how do I bridge this gap? How do we talk about this?