I sympathize with the bureaucratic rat’s maze you are being put through, but I do wonder if something as amorphous as ADD seems to be diagnostically, can really be accurately diagnosed in a 7 year old child? From your description he sounds kind of like a typical 7 year old, and the DSM criteria for diagnosing ADD are so all encompassing and general practically any active child can be pinned by them if the person evaluating them is so inclined.
trublmakr - I am so sorry for your struggle. It’s so hard for a parent to be trying to do what is best for their child and meet obstacles at every turn.
Keep pushing, many parents just give up and the family ends up suffering for the never-ending red tape. My friend wne through it with a child with severe ADHD and from schools that didn’t know how to deal (one actually put him in a straitjacket, a treatment for autism) and officials that just wanted to pass the buck she is still fighting. She is lucky in one way though, she now has a team that advocates for her child.
Keep fighting.
I wish I could offer some help, but I have only sympathy. I’ve done my run-around with Arizona public health/public services and found nothing there but spectacular indifference. The frustration I felt just trying to get basic services made me want to put my head through a wall. I really feel for you and I hope you make some progress.
Same here. Somewhere else here, I remember someone being frustrated with the state of social services in AZ…though now that I think of it, that might have been my mom.
Anyway, you have three of us pulling for you out here.
keep plugging Mama Bear, live up to your name here!
Not cool - you have every reason to be frustrated. You’re in my thoughts, and I hope things go better for you.
I’ve got three suggestions, none of which might be any help:
–Is there anyone at your son’s school that might help you advocate? A teacher, a social worker, someone in administration? Perhaps if you can find a sympathetic ear there, they also might be able to make calls and try to help you work through this.
–Write your Federal congresspeople/senators. Call their office, even. I’ve heard that congresscritters, for all their failings, do seem to genuinely want to help their constituents. I’m thinking that a personal story like yours and all the steps you’ve tried, futilely, might be something they’d get behind.
–Write/call your state reps - if you can’t get a federal congresscritter involved, maybe you can get some help from a state rep. One of them might be able to refer you somewhere else (argh for you, I know) so that you can get the help you need.
I’m so sorry you’re having such struggles. But it seems obvious to me that you love your son very much and are doing everything you can for him. And if that’s obvious to some anonymous message board reader 1000 miles away, I’m sure it’s coming through loud and clear to trublboy. And I imagine that just that knowledge does him a world of good.
Your next call should be to a realtor. Get out of Arizona (and their lacking social services) and find other states with better support systems.
You can find Dev. Disabled Services from other states here. Anecdotally, we had a foster family of 6 DD adults move from here (CA) to Arizona because of the cost of living; only to turn around 2 years later and move back to CA because of the lack of services they received there. I’m not saying California is the best; I’m sure there are quite a few states that are better, but I heard that Arizona is the pits. YMMV.
Good luck on whatever you do.
Crap…I start digging a little deeper and guess what…I don’t know what the hell I’m talking about!
This site has Arizona ranked 19th while California is ranked 31st. But California does have some positive attributes when it comes to the DD population in need. Very interesting to compare with other states, and helpful guide.
Once again, good luck.
Here is a page of locations of The Arc in Arizona, maybe they can help. I live in Mass. but the Arc is a national organization.
The Arc (AZ)
Sorry, that link doesn’t seem to work. Go to this page and seach in AZ.
The Arc locations search
Call the physician’s office back. ADD is a medical diagnosis. The teachers can corroborate the symptoms but certainly cannot treat the condition (e.g write a prescription), if it exists. If the physician’s office refers you back to the school, ask them where specifically they got their information that SSI recipients have to follow this protocol. If they have the statute, then you’ll have some legs to stand on with the school.
Worse comes to worse, I’d check out this site and see if they can offer any assistance.
Try your local State Representative.
A suprising number of these guys actually still have some intrest in their constituates’ needs.
And he can cut red tape.
I’m just wondering if the focus here is too much on getting an assessment and diagnosis?
From my understanding, the treatment for ADD is either medication or behavioural training. Is the OP looking for medication?
If not, then behavioural training is the other option and it sounds like you already have a good understanding of that. If money is to be spent, maybe a psychologist is the best place - in order to get more coping strategies.
I guess I’m saying: is it so necessary to have an official piece of paper with a specified problem? Surely how you deal with the problem is more important?
I feel for you. I’ve been dealing with health drama- involving both public health services, private clinics, charitable clinics and private health insurance- for months now. The funny thing is I’m perfectly health- I just need a few forms filled out. In the end I gave up and started shelling out cash to whoever wanted it.
Thanks to all who replied. I’m looking into the Arc thing and the congressman.
As far as contacting my son’s primary care doctor, I called him first. AHCCCS considers this type of thing to be “behavioral health”, and will not allow his PCP to diagnose, refer, or write prescriptions for these medications if he needed any. And I’m not saying he does need meds, all I’m asking for is an assessment. This is the whole problem, if you’ll read the OP. I can’t find anyone who will admit that it’s their job to do an assessment, because he is involved in several different agencies and programs!
And astro, I cordially invite you to come to my home for a week. Heck, I’ll even sleep on the couch and let you have my bed. His behavior is not normal for his age. Do you not think that I have researched this? That I haven’t spoken with others that know him? When his teacher is calling me threatening to hold him back in first grade next year because he cannot pay attention, and his daycare is calling me at work threatening to kick him out because they can’t get the group across the street to school and back without him becoming distracted in the middle of the road and putting the other kids’ lives in danger, when he needs to be told up to 20 times to do something, when he loses things on almost a daily basis, when he gets bad grades for not turning his homework in even though he did it and it’s right there in the classroom in his backpack, etc, etc, that is not normal. I’d thank you to realize that as his mother, and an experienced mother at that, I know when something’s wrong. I didn’t just pull all of this out of my ass last night. It has been an ongoing problem for years, and the years of behavior modification just isn’t working to a degree that is acceptable for any of us.
I wouldn’t mind if an evaluation did show he doesn’t have ADD. I wouldn’t even mind if an evaluation showed that I sucked as a mother and that I’ve been doing everything wrong. I just WANT an evaluation.
I phoned his DDD caseworker today and told her that I was considering hiring a lawyer. The panic in her voice wasn’t even satisfying, though. I just want something done.
The ARC looks like it’s for people with mental retardation. Just to clarify, he is not intellectually compromised in any way. I’ve never had his IQ tested, but he is apparently gifted in language arts, and on par with his classmates as far as math and other subjects.
It might be easier for me if he were retarded. Maybe then I could accept that this is just how he is and he doesn’t have that much of a future, anyway. Kind of like my parents did for my slow older brother. But this kid is bright, and has potential that I can see just going to waste if he doesn’t get help now.
Did you talk with the Arc or just conclude from their web site that they’re just for mental retardation? The Arc in our area has a lot to offer; a lot of it is for mental retardation but other things are just for anybody who’s mentally different. For example, they’re involved with Special Olympics, which is for kids with any kind of psychiatric (or physical) issues. Even if they focus on mental retardation, they should still be able to offer good advice on how to deal with the system, etc.
Congress is Federal—I’m talking State Government, and your Representative to the State Legislature.
Try that, too. Much closer to home & local issues.
We went through similar stuff with my daughter and her mild learning disability. The one thing I took from that process was this: Annoy them. Call them any time you have a spare moment. If they cancel an appointment, call until it is rescheduled. My wife and I made ourselves so annoying for the dill holes that were supposed to be helping us that they finally dealt with us more out of rustration, I’m sure, than any real desire to do thier jobs.
The professor left after class, but I talked to another friend who is a special-education teacher. She said to talk to his school counselor or teacher, and to save the big guns for later. She also said that assessment will probably begin with the Conners Rating Scale, which is administered by the parent and the teacher.
She also pointed out that, since this is the end (or close to it, depending on your school’s calendar) of the school year, schools and childrens’ services agencies are very busy with end-of-year stuff, so if you don’t get anywhere with the school now, you may have to wait a few weeks.
Robin
I want to second talking to the school. The Americans With Dissabilities Act says that schools must locate and assist children so that they receive appropriate education. Localy a big school district lost a class action suit because they didn’t provide these services. They may not be able to write the diagnosis, but there are people who know how to navigate the system and with the threat of a law suit on their butts, will do their best.
In terms of retention. I do not think they can hold him back if they have not assisted in providing answers and if you don’t want it to happen. Talk to his teacher. Has he learned what he needs to learn. If he has, then boring him with the same material again, isn’t going to accomplish anything. I still do not know if I did the right thing letting them hold my daughter back after first grade, but she was so scattered there didn’t seem to be any way to assess her progress.
astro I am sorry but you don’t know what you are talking about. There is a difference in ADHD kids that may not seem apparent in reading a discription of the symptoms. It is more than just an energetic kid. If you wait too long dealing with it the child can become frustrated, convince himself he is stupid, and often, at least with boys, become violent. With girls it tends more into sexual promiscuity.