Group Home for HFA Daughter?

[CaseysMom4559]

Hi all,

I am a 39-year-old mother of two. My oldest daughter, Casey, was diagnosed with HFA at the age of three. (My younger daughter, Delilah, is NT.) We have already tried acupuncture, medication, sensory integration therapy, dialectical behavioral therapy, and wheat and casein-free diets. We have tried physical therapy and ice skating lessons to make her more co-ordinated, and ballet to encourage social intercourse.

However, Casey's behavior seems to have gotten worse as she has gotten older. She strips in public often, masturbates in the car, and needs to line up her pasta before she eats it. Her spaghetti has to be combed before every meal. The content of our conversations are entirely about Roman History, and odd for a girl of seven. The stress of taking care of Casey has become more difficult as she has developed a dependency on Risperidal and will have grand mal seizures as a side effect of drug withdrawal.

I love Casey so much, but the stress and expense of keeping her at home has become too much for me to bear. As much as it pains me to admit it to myself, I think the time has come for us to move to a group home. I am so anxious about the move. We have not told Casey because I fear she will try to run away. I am at a loss at where to start in finding a new place for my Sweet Bolt to live. Do any of you have any suggestions for a group home? I live in the Westchester County area. Have any of you ever lived at a group home? What was it like?

Thanks for Helping - Emalyn

[Sophist]

Has she been tried on antiepileptics to make the Risperdal withdrawal easier? (I'm assuming she's already on anti-seizure meds if she's had grand mals.) My suggestion for getting her off the Risperdal, with doctor supervision of course, would be to crush the pills and then EXTREMELY slowly taper her off of them. Some sort of microgram scale could be helpful in that regards, to get more precise measurements. I'd recommend discussing this more with your daughter's prescribing doctor.

http://www.amazon.com/American-Weigh-Ge ... 680&sr=8-1

You can get a pestle and mortar like those used at pharmacies, if you don't already have one. And pharmacies sometimes have a liquid suspension they can give you in which to put the crushed pill.

I would recommend first trying to get her off this medication to see, for better or worse, how it's been affecting her behavior and then reassess whether you feel a group home is still the best for Casey.

[Aspen]

I'm not sure I understand why you would want to take Casey off Risperdal in the first place. How much per day is she taking and is she taking any other medications? Has she been evaluated by a neurologist for epilepsy? Have you taken her to a child psychiatrist and spoken about the stripping and masturbation? I think that the lining up of pasta before she eats it might be some form of OCD, but compared to the medical issues, stripping off her clothes in public, and masturbating in the car, I don't see it as such a serious issue.

My daughter used to take off her clothes at school sometimes. I think it started as a sensory issue but it was sustained by the reactions of the people at school, since her teacher and paraprofessional were male. Do you have any idea why Casey is doing it?

[SomethingElse]

My half sister lives in a group home (she is learning disabled at the very least, I'm not sure what else she is diagnosed with). She is now in her 30s and has lived in a group home for a long time. Most of the people in her home have Downs Syndrome or severe learning difficulties. They are supervised in everything they do, have their own bedrooms but aren't allowed locks on the doors, and my half sister has also had a little job. She isn't easily understood when she talks, has a poor memory, but is excellent at puzzles and crosswords (does them by shape of the pieces rather than overall picture and shapes of the letters rather than reading the actual words). They have specialised support and constant support, and it would be exhausting for someone to look after my half sister by themselves unless they had no other job, I should imagine. However, a woman who works there has said that they can actually make each other's behaviour worse because they pick up each other's traits (my half-sister, not sure if she is herself autistic, but she was adopting the traits of an autistic resident who moved there). So there are down sides to it. She has also been assaulted by other residents. It depends on how high functioning your daughter is and what the homes could offer her, I suppose - I for one would hate to live in a group home. If the problems you've mentioned are the only ones you have then I should think they are things that can be remedied (the food thing and the Roman History things don't seem overly negative, to me, as lots of us have 'issues' with our food that don't harm anyone else, or odd topics we like to talk about (my mum complains of the same thing).

[Clotheswise: Funnily enough, at school I had the opposite 'problem' - I hated getting undressed at school to get changed. Having gotten myself comfortable in my clothes I disliked having to take them off to change them for PE, then change back into them. They weren't as comfortable. It got to a point where a classroom helper had to keep me behind while everyone went to go PE to ask me why I hated PE/getting changed.]