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Exhausted parents leave autistic son at government office


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More than 20 years ago I was working for a protection and advocacy agency in my state. Housing and assistance for persons with disabilities was poor back then. Basically, the state and local government would only help if there was an emergency (if the parent died or refused to provide housing). I knew parents who were elderly and couldn't care for children who took them to homeless shelters and left them. When that happened the social services would have to act and provide housing and care, but what a horrific transition for everyone.

 

I know the situation in my state has gotten much worse. I am now the parent of a child with a disability and there really are openings in programs that provide services for adults with disabilities.

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One of the comments mentions that the mom is a social worker herself.

 

 

She probably knows first hand that the situation is absolutely hopeless and knowing that gives the family another level of stress. She may have even been like me--at one time advising families that they only ones who get services are on emergency placement.

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One of the comments mentions that the mom is a social worker herself.

 

I read (with trepidation) several pages of the comments and was heartened that nearly everybody was compassionate toward this desperate family. There's room for discussion of the politics and policies, but nobody seemed to be judging these parents harshly.

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I think she was compassionate in her decision. So many sad outcomes when parents can't handle the stress of special needs children. I'm thankful that he is alive and safe.

 

I will spare you the absolutely horrible details of a case near us, but the child was found dead. His mom asked many times for help, didn't receive any, and snapped from the stress.

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If the alternative is the whole family imploding, abuse developing, or (likeliest sounding in this situation) the young man getting killed in some accident because his parents aren't capable of supervising him--there's not much else they can do. There should be help available--support, respite, home aides, etc. I hate seeing society fail the most vulnerable. Families cannot reasonably be expected to cope on their own in a vacuum.

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What a heartbreaking situation. :(

 

Some studies have shown that the stress of caring for a child with autism is comparable to the stress and fatigue experienced by soldiers after extended time in combat. My DS has Asperger's and is very "high-functioning", and I know I've experienced considerable stress over the years. I can only imagine how incredibly fatigued and beaten down these parents are. I hope there will be a positive outcome for this young man and his family.

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If the alternative is the whole family imploding, abuse developing, or (likeliest sounding in this situation) the young man getting killed in some accident because his parents aren't capable of supervising him--there's not much else they can do. There should be help available--support, respite, home aides, etc. I hate seeing society fail the most vulnerable. Families cannot reasonably be expected to cope on their own in a vacuum.

 

 

Most states *do* have help available...sort of. The trouble is that the pay is so low that they can hardly find anyone to do the job. And when people demand that government be cut? These are the sorts of programs that get cut.

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Thank goodness she dropped him off at a gov't office. Maybe he will get some help. I've heard of parents just kicking their kids out to the streets. Or dumping.them on the streets.

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Most states *do* have help available...sort of. The trouble is that the pay is so low that they can hardly find anyone to do the job. And when people demand that government be cut? These are the sorts of programs that get cut.

 

 

The programs do exist, but the wait list in Texas is 10 years long. The last time there were budget cuts, the local group home had to stop serving adults dependent on Medicaid payments. There's really not much support for disabled adults and their families once they age out of school based programs.

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The programs do exist, but the wait list in Texas is 10 years long. The last time there were budget cuts, the local group home had to stop serving adults dependent on Medicaid payments. There's really not much support for disabled adults and their families once they age out of school based programs.

 

 

I agree there should be more help. I am pro-government. ;)

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That mother reminded me of myself when my twins (now six) were newborns. They both had pyloric stenosis, and would projectile vomit 10-20 times a day. We were always on guard and on call. Would they choke on vomit in the middle of the night? Would we be able to get some liquid into them that didn't come back out? The pediatrician (at the time) kept telling us they had GERD. Her words: "Stock up on Tide and muscle through it, Mom." Grr. I stayed up all day and all night, every night. I held them upright, wrapped up like twin burritoes.

 

When I realized they had PS -- we actually diagnosed them through the Internet, duh -- I took them to get help. They were hospitalized, had a two hour surgery, came home, everything was fine. My intuitution saved their lives. And, we got a new pediatrician.

 

What are THESE parents supposed to do? How can parents stay awake 24/7? We did that for 4 months and I often felt like I was going to die of a heart attack from the stress. I can NOT imagine doing that for 19 YEARS! For there to be no help for these parents, no respite (simply because he turns 18), no way to lock up the young man for his own safety -- how can they go on like that?

 

I remember just that short time of sleeplessness, anxiety, round-the-clock care of two newborns and a toddler. It was so painful and stressful and it wore us out so profoundly. My husband literally fell asleep standing up at work. Fortunately, he was on his lunch break, in the lunch line. Sound asleep with a tray in his hands. :(

 

I truly, truly hope this family and others like them can get the help they desperately need. It's clear that they care for their son.

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I do remember a similar case here in the UK about 5 or 6 years ago. A mum with an autistic kid who also had other severe special needs. She gave up her daughter to who was about 5 at the time because she simply couldn't cope and wasn't getting support. She was interviewed many times afterwards and very open about it all. From what I remember she was able to continue a relationship with her daughter whilst her daughter was getting the extra care that she just couldn't access otherwise. It does seem to be the same story over again. Parents at breaking point and no support unless they do something extreme.

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That mother reminded me of myself when my twins (now six) were newborns. They both had pyloric stenosis, and would projectile vomit 10-20 times a day. We were always on guard and on call. Would they choke on vomit in the middle of the night? Would we be able to get some liquid into them that didn't come back out? The pediatrician (at the time) kept telling us they had GERD. Her words: "Stock up on Tide and muscle through it, Mom." Grr. I stayed up all day and all night, every night. I held them upright, wrapped up like twin burritoes.

 

When I realized they had PS -- we actually diagnosed them through the Internet, duh -- I took them to get help. They were hospitalized, had a two hour surgery, came home, everything was fine. My intuitution saved their lives. And, we got a new pediatrician.

 

What are THESE parents supposed to do? How can parents stay awake 24/7? We did that for 4 months and I often felt like I was going to die of a heart attack from the stress. I can NOT imagine doing that for 19 YEARS! For there to be no help for these parents, no respite (simply because he turns 18), no way to lock up the young man for his own safety -- how can they go on like that?

 

I remember just that short time of sleeplessness, anxiety, round-the-clock care of two newborns and a toddler. It was so painful and stressful and it wore us out so profoundly. My husband literally fell asleep standing up at work. Fortunately, he was on his lunch break, in the lunch line. Sound asleep with a tray in his hands. :(

 

I truly, truly hope this family and others like them can get the help they desperately need. It's clear that they care for their son.

I only had one who wasn't near as bad but I well remember the exhaustion and the oh so helpful advice to just sleep when he did. I remember my mil telling me he had colic and to just get over it essentially, no offer for help. Sadly it seems even sympathy is in short supply, forget about actual help. I remember vividly feeling like a zombie for the first 6 months and not really feeling normal until he was 2ish. I cannot imagine feeling like that for decades.

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Ontario has special education. By law, the child should have a transition plan. From the description of the severity, that would be a plan to go to a group home at a certain age.

 

Seems to be a lot of detail missing from the story.

 

 

According to radio interviews I have heard, he has type 1 diabetes and the group homes in Ontario do not have the capacity to give him insulin injections and monitor his sugars. It would not be an appropriate placement for him for this reason.

 

Edited for the spelling of diabetes.

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Does that mean the lad is not in school?

 

My friends with autistic teens do not spend 24/7/7 caregiving..the children (in US) are in school full time at age 3-21, with the pm at a therapist and pretty much out of the house from 7:30 to 5 four days a week, including summer school.

 

 

Not all places in the U.S. will have after school options like the therapist mentioned above. Schools do have to keep them until 21 though, by federal law.

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My son with autism and hypotonia, who is also on anti-seizure meds, is now 21, 22 soon, and now out of school (we took him out a month early as he slapped an aide's hand and the school almost filed charges. Better leave early than risk him really doing something!). I am now 24/7 on "Joe call" as he for whatever reason will not tolerate his father even in the same room, and I can't very well ask his teenage sisters to be responsible for him much. Luckily, Joe is high-functioning enough that I can tell him I am running to the store etc. and he knows not to leave the house or do more than nuke leftovers. But he can not live by himself or hold a job, Our state has a long wait list for services, and priority is given to cases where the caregiving family dies or is too old to care for the person. My getting a job won't happen as I can't leave the house too long. I did think briefly of childcare - but who would want to leave their kid in a house with an autistic adult? I do not think Joe would "do" anything - but the risk of someone accusing him of hurting a kid is too great.

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