Residential Homes for Autistic Children

Greetings MK,

I'm happy to have discovered this forum as this has been a topic of interest for us for awhile. Our daughter, now 3 yrs old, suffers from autism, seizures, a mild brain injury, a sleep disorder, a potentially fatal metabolic disorder (she is being supplemented to manage this), severe food allergies, severe allergies to environmental toxins, and is visually impaired (will begin early intervention class at the school for the blind this summer). So far, approximately every six months, a new disabling condition gets added to this list. I stay home to care for her full time. However, we've been researching residential schools for the past three years for fear that we will not be able to care for her long term. Her symptoms and quality of life have improved significantly with the implementation of biomedical interventions. However, we're simply exhausted as her brain injury impairs her ability to sleep through the night.

How is your little one faring in their new home? We tried without success to locate a place for Gabby, but as she suffers from multiple disabilities and severe food and environmental allergies, we've been unsuccessful. Furthermore, her present protocol is stellar and she is thriving on it, but it involves unyielding dietary restrictions, highly specialized PROMPT speech therapy, cranialsacral therapy, sensory integration OT, vision therapy, heavy mineral and vitamin supplementation, farinfrared sauna treatments and hyperbaric oxygen chamber therapy as needed, numerous regular visits to highly specialized doctors, as much interaction with typical deveoping children as we can manage, etc. I have yet to come across a residential home that can accommodate even a third of Gabrielle's needs.

Additionally, although we are chronically sleep deprived and suffering from declining health, we wrestle with the guilt and tremendous fear of what harm may potentially befall her at a residential home. How did you manage to overcome this such that it allowed you to move forward? Do you have any suggestions? coping mechanisms? advice?

I think what further complicates our case is that Gabrielle has been extremely responsive to her protocol. She is now so verbal and cognitively capable that she does not qualify for state provided intervention services. Her social skills and behavior have improved to the point where she now has friends and is able to particpate in group classes such as ballet. However, she continues to suffer from chronic head pain, seizures, disruptions in her REM sleep, digestive issues (though these are improving), a suspected movement disorder, problems with motor planning skills, and degenerating vision. Despite my reservations regarding residential care, I often wonder if it would be safer for her to be placed in a good residential school---one that can accommodate her needs. My husband and I constantly worry about how such a fragile child will fare in the "real world", unprotected. Do you feel that your child has benefited from living in a place where they can receive quality care around the clock? Do you worry more or less since making this transition? How has your life changed? As far as you can ascertain, how has your child's life changed?

Oh, my...

Where to begin....
Okay, we've had to resort to res. homes because our son is soooo strong, willfull, violent...these are the kinds of kids whi live in res. homes for classically autistic kids that their mom (husband is deployed ) can't manage.
I would not even mention her autism if you don't want her in a home spec. for it ( + you DON"T!)
I would stress to the social worker that she is Med. Fragile.w/dietary complications.
Honestly, if I were you, I'd move mountains to get an overnight aid 3-5 times a week. Even if you have to charge it...whatever you have to do...keep her as long as possible.
As far as how to cope w/it- we do what we are forced to do and mother our other children as guilt and worry permit.
Those 2 feelings never go away, they're part of the trade.
It is the HARDEST thing I have EVER done.
I hope you never have to do it. :)