Disabled Adult Child and Mother Need Help

[Demeter]

Fellow DUers:

We live in a co-op, me and my autistic daughter. Because she has had a very hard time this summer with drug interactions and disruptions to her routine, she has been very loud: screaming and banging the walls and doors.

I have been doing the rounds with doctors, shrinks, social workers, etc. I have called for police assistance, the whole nine yards.

Meanwhile, the neighbors have been complaining to the board---

They can't sleep at night for worrying
They fear for their safety (the kid never leaves the house by herself)
They don't like the noise (as if I did)
Their health is being affected

And the Board is threatening me with eviction if I don't instantly "fix it"

Additional facts:

Her condition is no secret. We've lived here 10 years. I am a member of the board, putting in hours of unpaid labor every month to keep this place running.


=========================================================================
At this point, I am trying to keep my rage out of my gut, because it's making me sick.

These women have screwed over their own kids, and told the stories proudly.

I'm trying to see that my kid isn't locked in a wharehouse for the rest of her long life and permitted to deteriorate. When she isn't having a drug interaction, she is a very pleasant personality. She has so little in the way of coping skills. We've come so far, and we are both young enough to go farther. She hasn't hit a brick wall in her skill growth, and I want to progress as far as possible.

If she goes into group home, she will vegetate, eat herself to death, and I will lose what little of my mind is left.

====================================================================

What can I do?

[Kali]

1. oh man that is tough

do the bylaws give you any guidelines? Can your medical team help? (write a letter or meet with the complainers or the rest of the board)

I would guess if you have an idea that things will calm down soon you could offer that, along with the explanation of what the problem has been. Making it personal to get whatever sympathy you can might help. They probably do have a legitimate concern about loud disturbances.

[Demeter]

4. I Am Overwhelmed, Mostly

I was dressed down by the board this evening, which is why I'm not sleeping now. I did ask them what exactly they thought I could do--and the only suggestions were put her in a home or move.

My friend on the board suggested I put the place up for sale, which is a joke because nothing is selling here. There's 5 years of housing on the market. And with the damage she's caused to the townhouse, it wouldn't sell anyway. And then I could say that I am trying to sell, and stymie them.

One neighbor is 75, and her father lived to be 90. The other is going to die of lung cancer, most likely, in a few years, at the rate she smokes.

[roguevalley]

16. I don't know what protection the Americans for Disabilities Act can

give you but I would look into it, hon. I wish you the very best.

[Traveling_Home]

2. What City are you in? nt

[Demeter]

Ann Arbor, Michigan

[Wednesdays]

13. What I wouldn't give to be in Ann Arbor!

Not to belittle your plight, 'cause it looks like you've got your hands full, but at least you're living in one of the best places in the country to find qualified psychiatric care. Among the top 25 cities, if not the top ten.

We're stuck in the center of Oklahoma, where it seems the prevalent treatment for psychiatric conditions is "Pray harder to Jesus." Our 10-year-old daughter shows classic symptoms of Asperger's, but we've yet to get a diagnosis because of a nightmare combination of:

1) Lack of qualified psychiatrists in the area,
2) Among the psychiatrists in the area, only a handful are covered by our health insurance at all,
3) Our insurance pays only 40%, and even that after a $750 deductible, which basically puts psychiatric treatment out of reach for us,
4) IEP? Are you kidding? Even among teachers here, most don't even know what that stands for.
5) There is NO appropriate school we could send her. Her 4th grade teacher (who thankfully is highly enlightened about special-needs kids) couldn't name a school in the city that could accommodate our daughter's specific needs, in terms of class structure.
6) As in your situation, our daughter isn't considered "severe enough" to warrant much attention (but paradoxically, is problematic enough to constantly affect her schoolwork and social life).

After our daughter had a particularly bad stretch in 4th grade, her teacher strongly recommended psychiatric help. We scraped together what money we could, and in July we called the short list of psychiatrists on our insurance plan. All but one was booked up, so we visited her for a few sessions until the money ran out. Frankly, I was sorely disappointed--it seemed like the therapist was not about to consider a biological basis for the behavior (didn't even initiate a physical exam), basically dismissed the condition as an "anxiety disorder," and seemed to look for weekly sessions to "talk it out" (with the accompanying huge cost). Unfortunately, we're hardly in a position to get a 2nd opinion. :(

[Demeter]

14. That's Why I'm In Ann Arbor

I was languishing in New Hampshire, where there was nothing--and probably never will be. Here there are resources, there are still funds, and there are some very talented and caring professionals. How long that will last, I'm not sure--W killed our economy with 9/11, and it's been downhill ever since.

[hashibabba]

18. I went to a sliding fee scale clinic in Tulsa. It was pretty good. There

were some problems, but I got a lot more help than I'd gotten previously in Florida. I don't remember paying anything for the visits (here in Virginia I pay $5 for each service) and my prescriptions came from samples, except for a couple that I could get free or nearly-free from WalMart.

Oh, and yes, for the first few years in OK, they told me to pray harder, too. Sad. By the time I got help, I was so far gone, it's a miracle I'm still alive.

[sailor65]

3. I see you live in Michigan

Please forgive the intrusiveness of the questions:

What is your child's formal diagnosis (Where on the autism spectrum?).
Is your child on an IEP (Individualized Education Plan) yet?
Is your child being treated with psychiatric medications now?


Our 11 year old carries a diagnosis of Early Onset Bipoler but also demonstrates the PDD symptoms on the spectrum. We've had many problems similar to yours, and probably to those you may not have encountered yet. The good news is, my wife has an extensive file here on resources and rights. The bad news is, she's asleep and I have to ask her where she put it tomorrow. The "More" good news is that PDD and up on the spectrum, which it sounds like you might have a diagnosis for already, carries with it the potential for more community services and more advocate services than our boy's core diagnosis. Our boy has had multiple hospitalizations, has spent a lot of time at Hawthorne Center (Which you may have heard of, in Livonia), has had Police interventions, and the like (Yes, the screaming, banging, throwing, etc.). He's also been thrown out of 7 daycares for the same. We've finally found some stability, but it was a long painful process. We do what we can to help people get there faster.

I'll get back on tomorrow afternoon or evening with the links that we have, and all the data. I think I have enough posts to PM you now, so to help maintain privacy for you, I'll contact you that way.

There IS help out there once you start to dig it up.

[Demeter]

5. Her Diagnosis is PPD-NOS

She can be very high functioning--or have a temper tantrum. She has IEP, but only 2 years to go. The school does nothing for her, they don't consider her "severe" and worthy.

She is treated with celexa and risperdal. Also zantac for digestive problems. It turns out she was having serotonin psychosis from taking pseudoephedrine for her cold.

Part of the problem is her compliance with self-care, including taking her medications properly, varies. Since I must work, she spends some time alone. I was working while she slept, but in her frenzy mode she wakes up early and refuses to go back to sleep.

I'm just so tired.

[sailor65]

6. May I ask

how old she is?
Is the school she attends designed for developmentally disabled children, or is she still being mainstreamed? One of the big breakthroughs for us was getting ours into the proper school. The mainstream public school system is garbage in this area.

We have had a hell of a time with Risperdal. The greatest succes we had in meds was Lithium/Abilify, but we dropped the Lithium recently when our boy's doctor didn't see fit to do Lithium draws every month, although we protested, and he wound up at the Pediatric ICU at Detroit Children's Hospital with Lithium/Potassium toxicity. With the proper draws though, he would probably have continued to succeed on the Lithium. We just can't bear to put him back on it after recent events.

We were so tired at one point we didn't think we'd ever make it. I understand completely.

The looks and "Advice" from people in stores and other public places,
Neighbors who know better but enjoy treating you like some shi**y parent and your kid like some deviant.
Social Workers who want you to send you to some damn parenting class you've already been to instead of helping your child.
Doctors who throw their hands up in the air and say "I just don't know what to do with this kid!" (YES, we had exactly that at one point!

Hang in there

[Kali]

7. she said adult in her subject line

thanks for helping, I'm afraid I am not familiar with much of this - the post came up on the latest page and I impulsively jumped in.

Can a housing association evict? Does ADA (I think that is the acronym) cover this?

[sailor65]

8. DUH!

Thanks, I just totally missed the "Adult" part.

The ADA definitely has provisions for this. That's part of the stuff I need to get together to post to her tomorrow. I don't know a lot about coops, but in general, associations are severely restricted in their ability to be punitive on this alone. The fact that she is on an IEP will help a lot. Although some cite "Noise ordinance," it can be very difficult to make that stick.

Now I know she mentioned "Selling," so I suspect the coop might be simply a housing association which I don't think can actually "Evict." This is the area I plan to focus on initially, when I call the case workers we've worked with over the past few years, who know more about the specific legal housing issues. I have to go back and re-read the posts, since I missed the "Adult" thing and also may need to review the "Selling" issue. If it turns out that it is an association and she's the homeowner, It will take a whole lot more than some ass-clown on a board telling her she has to leave. I know how tired she is because we were that tired, and the board is probably hoping she will just give up. She needs help to avoid that. I'm hoping my wife and I can give that help.

[Lenore]

9. An "Adult" with 2 years left on her IEP

Since disabled children are entitled to their education through age 21, including their IEP's, I surmise the girl to be 19 or just turning 20.

To me it sounds like housing is just part of the problem, albeit a critical issue at this moment. There also seems to be an issue with appropriate educational services which, as already mentioned in this thread, can make all the difference in the world. In either a negative or positive manner. Education does not stop or start at the school house doors, the courts have long recognized that a child 'learns' even when not actually sitting in a classroom so maybe there might be a way to get some of the needed resources through the existing IEP.

Also, in terms of being tired and overwhelmed, maybe "respite care" could step in a few hours a week to give tired momma a break....

[Lenore]

10. One more "recommend" please

One more vote will put this on the greatest page which would greatly increase this threads visibility and hopefully lead to some helpful ideas and even solutions.

One more vote please!!!

[lumberjack_jeff]

11. In my area, I'd get in touch with the local chapter of The Arc

http://www.arcmi.org/index.htm


Washtenaw Association for Community Advocacy -
Region II

EXECUTIVE DIRECTOR

Sherry Fernandez, CEO
1100 N. Main St. # 205

Ann Arbor, MI 48104

(W) 734 662-1256

(F) 734 662-2699

E-mail: [e-mail]

This may be a good start.

My youngest is 8 and has Autism. You have my fullest empathy. Without a strong support network, you have a tough job - but it can be done.
:hug:

[AnotherDreamWeaver]

12. I read a book called "Son Rise"

It was about an autistic son and how the parents found ways to engage him and it was positive. No knowledge of the situation through personal experience though. And I don't recall the author, but maybe a google search would bring it up.

Best Wishes, ADW

[Demeter]

15. Thank You All for Listening

I appreciate all your suggestions, and will follow them up. Thanks for being there at 2 in the morning.

We just got back from counselling. It went very rocky, but I think she got tired out and dissipated the bad emotions. She came out of the rage and now is calmly going about daily life. I told her I would drive around the city all day until she started behaving and promised to do so all day. Since she wanted to watch a video, this seemed to have an effect (after two aborted passes at the driveway).

So keep fingers crossed. And if you want to find a pretty good place to live, I do recommend Ann Arbor. I even recommend my co-op, which is the only place I want to live!

[KamaAina]

17. Fair housing: You may not be evicted solely because of a disability

Your protection and advocacy agency (every state and territory has one) should be able to help (if they're a good one, unlike ours, that is):

http://www.mpas.org/HomePage.asp

Michigan Protection & Advocacy Service, Inc.
Lansing [phone] | TOLL FREE 1-800-288-5923 (Voice or TTY)
Fax [phone]

Remember, it's not just a good idea, it's the law!