I’m so frustrated with “the system”. I wouldn’t be surprised if this thread sank like a stone, but I just need to get this off my chest.
My youngest son, age 7, has something wrong with him. Other than the obvious Chiari Malformation Type II, macrocephalgia (without hydrocephalus), mild seizure disorder, gross motor delay, fine motor delay, and crossed eyes that he’ll need another surgery for. I’m confident he has ADD, as he completely fits the profile and fails very test for it that I’ve found online. Anybody that’s ever known him and/or worked with him has encouraged me to have him tested. For months I’ve been trying to get him tested. But it seems we’re stuck in this “system” bullshit that we can’t seem to get out of.
First I called his doctor. No, sorry, but because he gets SSI, he also gets AHCCCS, Arizona’s version of Medicaid, he has to go through the school system or behavorial health. I call the school. No, sorry, we don’t do that, call his doctor. I call behavorial health. Yes, we do that. Yay, we’re getting somewhere! We go in, have a 20-minute meeting with someone that calls herself a social worker. Not a doctor, no assessment was done. She tells me he doesn’t have ADD based on the fact that he didn’t interrupt us during this 20-minute meeting and wasn’t bouncing off the walls. I point out to her that no, I don’t think he has ADHD, but all the signs of ADD are still there. The forgetting things, the not focusing even as he’s being spoken to, the carelessness and impulsivity, the inability to follow instructions at home or at school, even though his IQ is clearly average or even above. There is clearly something wrong, but at this point, I just want an evaluation. A professional, to administer some kind of test, to speak with him, something concrete to let me know just what is the problem.
Social worker lady hooks us into this “Child and Family Team” program. Now a stranger will be coming into our home at least once a week, to work on my “parenting skills”. I’m a little put off by this, as I’ve raised two other children to teenage-hood and they don’t seem to have any major problems, in fact they are well-behaved young men that do well in school and in their community. But okay, I agree to do this for now. Maybe I’m missing something, maybe I’ll learn some new techniques, maybe some good will come of it.
Three months and 13 scheduled appointments with the Child and Family Team lady later, she has canceled all but one apppointment. I’ve met with her one time. She took some information, listened to my concerns. She advised me that I can now qualify for an evaluation for ADD because it seems to her like maybe he does have it, and I’ve already been doing everything that they want you to do first before going to the next step. I’ve been making lists for him to help with forgetfulness, I’ve been keeping our home life to a strict routine, I’ve been making instructions plain and simple for him, and on and on. I’ve scheduled my life around helping him deal. She says she’s going to visit him at school, keep coming over. She never did visit him at school, and since her one visit, she’s cancelled on us 6 times for subsequent visits. She cancelled our first visit 6 times before she made it.
She says it’s the Department of Developmental Disabilities’ responsibility to approve him being tested by a psychologist. Yet DDD keeps referring me back to behavorial health, who referred me to her. I don’t care whose responsibility it is, whatever it takes, I just want an evaluation. I’ve been trying to get one for months, and everyone keeps passing the buck. It’s not their job, go there. No, no it’s not *our * job, it’s theirs. And so on and so forth. I’m tired, I’m frustrated, I’m losing my patience. Lots of other parents seem to have no problem at least getting an evaluation, but I apparently can’t get one without taking someone hostage.
Lately I’ve been thinking of hiring a lawyer and suing someone. I don’t yet know who, maybe DDD since it does seem to fall under their umbrella. Maybe the school system, since they do seem to have some responsibility to assist this kind of student. Maybe the Child and Family Team lady, since she can’t seem to be able to at least come over as her job description states.
This all fills me with grrrr. And my child, meanwhile, is not getting what he needs, because nobody seems to think it’s their job. Tomorrow I am calling… who? I have no idea! But someone, dammit, I’m calling someone!