mama bear
Here at Special Needs Bliss, one of our goals is to give you information and resources. The other goal is to let you know that you are not alone. That's important. With that in mind, let me share with you a recent development.
I have two kids with special needs - needs that are very different from each other. My story for you involves my oldest son, Joseph. Short story – he has learning disabilities and a mental disorder. He's on an IEP. He's also on something called an AB3632 through my state. Basically, the AB3632 allows him to get the mental health care he needs that he wouldn't necessarily have access to through our medical coverage – and that we certainly couldn't afford privately. The IEP and AB3632 work together in a complicated process I don't fully comprehend.
Joseph has been spiraling lately. His "episodes" for lack of a better term are coming faster, and harder. My husband, Jay, and I, after 4 years on the IEP Combo Pack (my term) asked that he be reviewed for medication for anxiety. We finally feel that the benefits would perhaps outweigh the risks. Maybe. We wanted to talk about it with the professionals in Joseph's life.
Cue the Dun Dun Duuuuuuuuuuuuun Music…
The request went up the chain of command, as medication requires a psychiatrist. Fine. We were waiting on the pychiatric consultation appointment. Everyone actually involved in Joseph's case seems to think that the consultation is a great idea. We then got a message from the theraputic center he attends that Joseph is "beyond the scope of the facility's capabilities." Oh, and if he has another episode to call 9-1-1.
Did you hear that in the distance? That was mama bear growling.
What followed were what my husband calls my "Fingers of Fury." I should have theme music to attend the clickety-clackety of my keyboard calling in the troups. In short, I had the school contact the Department of Mental Health. While they don't take parents very seriously, they take school districts very seriously. I ended up liaising with the Department of Mental Health. They were very concerned. I told them I had a feeling it had to do with money. A-Ha!
You see psychiatric services had not been included in Joseph's AB3632. The situation is not resolved, but it's on its way. The ball is rolling. But the whole thing could have been avoided – and much drama reduced – had they just said, "Hey! It's not on here, we need to add it." Instead of instructing me to call 9-1-1.
I had an enlightening conversation with Joseph's therapist. Apparently, they've not dealt with the likes of me before. But they're listening now.
The moral of the story is, don't be afraid to bare your fangs when your child's care is at risk. It can be embarrassing. It can be uncomfortable. But in the end, your child benefits.
Photo by debbie_sonberg
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Good for you Michele! "if they just told me" is a phrase way too many of us special needs parents have to say. I have 2 spec needs daughters, both completely different. Amelia has Down syndrome and Zoe has autism.
We decided at Amelia's 1st kindergarten IEP that we didn't want to label her "mentally retarded". The school pyschologist and my husband had a HUGE fight, right there in front of our advocate. After 30 minutes of pushing on this issue at every chance he could, the psychologist said, "Well, we can label her as disabled due to health reasons, other". Grrr. He could have said that at the top of the meeting and saved us a lot of grief.
But yes, we have to fight for our kids no matter WHAT. It's hard, and you feel dumb, but it makes you stronger, and your kids benefit. Good for you!
Hear! Hear! (Or is it Here! Here!?) Anyway, a BIG yes you can to parents for speaking up for the needs of their children.
Big system (any school- or state-funded) services are notorious for being restrictive and disinterested in the individual. Persistence is necessary, but I would promote sugar over vinegar as a quicker path to defending your child. (Not that it always works.)
I hope your son receives his psychiatric evaluation soon.