Another great story from The Atlantic. Gift link
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Thank you for sharing!
I think this would resonate with a lot of us:
“Strange how seldom we think about who our parents were as people before we made their acquaintance—all the dynamics and influences that shaped them, the defining traumas and triumphs of their early lives.”
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As the parent of a child with profound autism who went into a residential placement this year, this article was excruciating to read.
I know many things are different now than 70 years ago. The place my son lives is a truly wonderful place, staffed with so many loving caregivers. They are able to provide him with opportunities and consistency (and safety!) that I just couldn’t provide at home. He comes home for about 24 hours once a week, and for that amount of time we have the energy and are able to play with him, enjoy him, and show him love. After 11 years, we just couldn’t do it 24/7/365 any more.
But articles like this are painful. And they also make me fear the movements in some quarters to eliminate residential placements (without a push for and fund proper supports to enable kids to stay at home, or rather than finding a way to ensure healthy positive residential placements). They aren’t ideal, but nothing about situations like ours (or the ones in this article) are ideal. For 10 years I was the mom like Grace Feist, until I couldn’t do it anymore. And that is coming from a place of significant privilege on my part — a husband who makes enough money I didn’t have to work, a strong educational background so that I knew how to access resources, a culture/race/income that made people take me seriously and give me the benefit of the doubt. I know so many parents of kids at my son’s school who are struggling with even more than my family does.
Similarly, there are children who wind up in residential care in spite of their parents’ best and most valiant efforts, because their risk of self-harm or of harming others remains too great. Parents are not, nor should they be expected to be, saints.
I feel like this paragraph thrown in as a “of course”, but really doesn’t do justice to the wide range of experiences of people who end up placing their kids in residential settings.
Anyway, I need to go bawl for a while now….
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Thank you for the gift link. My friend had her eldest child born with down’s syndrome. She took courses on how to help work with special needs kids and advocate for them.
Eventually, her husband divorced her because she refused to put him in an institution when he reached 18. Her two younger kids each got a master’s in developmental psychology or similar, on how to work with people whose brains are wired differently. The youngest of the 3 now has a phd.
My friend has started a small home for older high functioning special needs adults like her son who is now in late 40s. Her son is flourishing and has had a happy life. He is close to her and his siblings and nieces. His level of functioning continues to improve and he’s learned to cook simple meals and read.
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My daughter is a supports cooordinator for people with intellectual disabilities and profound autism. While things are much better than they were in the 50s, there is still a huge lack of funding and resources. Every bed in a well-run group home could be filled 5 times over.
At the risk of sounding political, if everyone who was staunchly “pro life” were to give a bit of time or money to support these individuals, we would be a lot better off.
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I am stunned, reading this. Fortunately, most such kIds are kept at home nowadays.
I just finished reading the article, and I am crying. Wow.
My niece has a severely disabled child. I imagine that she would have been told to institutionalize him in the past. She is fortunate to be able to afford therapy for him, and she is able to take him to the best doctors. Her family lives with my brother & his wife, who are able to help with the kids. It’s incredibly hard work taking care of his needs, and while there are many things that her son will never do, she is working to make sure that his life is happy and filled with love. So the story hit me in the heart.
@MAmomto4, I can’t imagine how difficult it was to make the decision you made, and I have no doubt that you made the right decision. Keeping your child safe is important, and being able to spend quality time together the way you are doing is a blessing.
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I have a friend whose son is 24 and has the mental capacity of an 18 month old. He’s ambulatory, non -verbal. Recognizes his family…basically an 18 month old. He lives with them but the mom is exhausted, even with the past school care and now a program he goes to 2 days a week. She about went crazy during Covid and talked about finding a facility. Her adult kids balked, which is so unfair,
I think it was very smart of you to do this. Most likely, you and your husband will pass away first. Who will take care of your son? Who would find right facility and monitor it? Who would help him transition?
I know you feel guilty and are hurting. But you did the right thing! You did the responsible loving thing! Never forget that.
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My niece’s situation is somewhat similar, but she refuses to send him to school (he is 7). She homeschools him & her kindergartner. I won’t judge, because I am not in her shoes. But I worry about her health. She doesn’t get a break. She doesn’t want it, but she probably needs it.
My cousin, who has an autistic child in his late 30’s, moved to Florida because there are homes for autistic adults whose parents are getting older. They had hoped to get him settled into a good place near their home. He is social, but he is not high functioning - he’s nonverbal & nonambulatory - so he needs specialized care. Unfortunately, the homes are unable to care for him. She is in her late 60’s, so she’s hoping that a good option will be available before she & her H are gone.
The challenges for parents are daunting, and they aren’t just lifelong … they extend beyond the parents’ lives.
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My SisIL has a high functioning niece who has significant health challenges. She is able to help at the store her mom runs—help customers with merchandise and ring up sales. It’s unclear what her future will be. She could probably live in a family-like supportive setting like the one my friend runs, but there are so few options for such places. Currently she lives at home. Shes in her late 20s/early 30s.
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Terrific article!
The only thing I wish is that it had been more clear about the role of residential placement. Residential placement isn’t inherently good or bad, it’s just one tool.
What’s bad is paternalism, secrecy, shame, “one-size-fits-all”, family disempowerment, lack of resources.
What’s good is parents being recognized as the team leaders and the experts on their own situation, communication, openness, flexibility, honesty, acceptance, and funding (do not forget funding.)
A residential placement can be the very best solution in many cases. I have seen individuals and families thrive!
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I work in one of the best public school programs for kids with autism in the country. People have moved to this district from all over the world. These parents would move mountains for their kids. But what worries me is that they can only do so for so long and there are so few quality programs for them once they age out of the school system. The numbers are staggering of those that will be aging out soon with no programs to go to. It is a health crisis that no one seems to want to deal with. I happen to work in an area where parents have a lot of income, but funding, oversite and zoning all get in the way.
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Know two families in our state who are struggling with the aging out of specific services at 22 and facing painful, and in one case dangerous, lack of services. (This is a state where one would likely expect the better end of public services; frightening that maybe it is that.) A friend can’t walk across the street for coffee with a neighbor. Her mid-20s adult kid is non-ambulatory/non-verbal. After years without services during Covid, finally finding the newly age appropriate program when things open up again, the absence of drivers for the specialized van makes the program impossible. 24/7 at home. Everyday; not close to optimal for any of them. Likely not sustainable as parents age. Ground has been lost.
Another has a grown child who is on the more challenged end of the autism spectrum, aggressive on occasion and inadvertently excellent at discovering all the cracks the system will allow them to fall through. Single working parent is a sophisticated advocate, but placements/day programs are lacking and in some very bad moments, parent has been assaulted. Hospitalizations are brief and appropriate discharge plans elusive.
These families are lonely heroes. There is no one size fits all and some families face these circumstances with few resources and much perceived judgment. Many parents would crumble under the weight of these demands and isolation. Sadly, the very circumstances that necessitate collaboration and political advocacy often preclude it. Daunting.
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I have been working to support individuals with developmental disabilities in MA for over 30 years. I have heard horror stories of how these individuals were treated in institutions around the state, had first-hand experience of siblings not knowing they had disabled brothers or sisters until their siblings passed away, etc.
Thanks to this wonderful man, Judge Joseph Tauro whose compassion and strong sense of justice made the biggest impact in the lives of individuals with developmental disabilities and moved MA’s treatments of these individuals out of the dark age.
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I cried an awful lot reading that article!
My uncle was born in the 1930s with cerebral palsy in a rural town in the Midwest. Doctors wanted my grandparents to agree to send him to live in an institution, but my grandparents refused. He had a genius-level IQ, walked with a limp, slurred his speech, and went on to graduate college and program Titan missiles for the Dept of Defense for 40 years. What a different life he would have had if my grandparents had caved to the pressure.
I’m glad that society has changed.
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I forgot to add that in the school I work in, the students in my program have been included in general education classes as much as they can be since kindergarten. By 5th grade, our students have developed relationships with their classmates (some of who have very challenging behaviors) and I am sure they will always be looked out for within the community. While they may not include our students as much as they do now as their lives get busier, they (and their parents) would never tolerate seeing them being mistreated. Which is why it’s even more heartbreaking that even if they can get into a program when they age out, there is zero chance that it will be within the community where they have developed these relationships.
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My mother was raised with her aunt, uncle and 4 cousins from when she was about 10. The cousin who was her same age suffered loss of oxygen at birth. Also in this household was a great aunt who took care of Carol. Carol was so so sick as a child and they never thought she’d live. She stayed at home with the elderly aunt, so she learned all the household chores like cooking and cleaning, dishes, washing clothes, etc. Carol’s mother was an attorney but worked as a town clerk. She was a big advocate for services for Carol, but Carol never mastered things like taking the bus or money. My aunt and uncle retired to Florida in the mid-70’s, the older aunt had to go into a nursing home, and Carol had to go into residential living. They turned over 3 of her father’s pensions to the state, including a WWI pension and since Carol didn’t die until 2021 (I think she was 86), the government paid that pension for a long time! Carol had money. Her sister took care of all her finances which is a big job. Carol was verbal and remembered a lot. She always liked my father and remembered most of the kids names in my generation. Many relatives looked after her over the years and would take her to weddings, family events, to meals. The older sister just died at age 90. It takes a lot of administrative time.
She definitely wasn’t hidden, and I think it made a huge difference in her life. She lived in the same house for 30 or 40 years. One problem was that there was a group home right next door but she couldn’t live there because she kept going to HER home (except other people lived there). I’m not sure they could have done it if they hadn’t had the great aunt who could stay home while the parents went out to work.
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Yes, services for individuals with aggression are especially lacking. It is a real problem!
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