7.06.2008

The Hardest Question

Have you ever, or do you know someone who has, considered institutionalizing a special needs child? Would you feel comfortable discussing the subject in the comments? Anonymity is more than fine.

I feel like an ass for qualifying my query with "I'm asking for a friend," because the pain of considering this option is so very piercing, so very real.

The main issue in this case -- which hits close to home -- is unmanageable and unpredictable violence.

Thanks in advance.

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18 comments:

  1. That question is my deepest, blackest fear. I worry about the future, but at the same time, I refuse to think about it. His aggression scares me. Hugs for your friend. They are where I am terrified we might end up.
    P.S. Every state has a medicaid waiver program to help in situations like this. And to help the family get the help they need so it doesn't have to happen if at all possible.
    Use google and put in "state's name, medicaid waiver"

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  2. Well. Yes. Hardest question, indeed. I have a friend who has custody of her grandchild (both parents = useless), a boy and a girl. The girl has some minor behavior issues but is mostly a joy. The boy (he is 13 now) is bi-polar and has myriad other behavorial & mental health issues and as he got older strictly based on his size, strength and unpredictabily, my friend and her husband decided to institutionalize him. This was after some gut-wrenching situations wherein the boy hurt his sister, pets, his grandparents, teachers and friends but even given the circumstances it was a terribly hard decision to make. My friend still questions if she did the ''right'' thing (the boy was 9 at the time) but the end result is the boy is getting a lot of help with behavior modification and his sister isn't being continually traumatized in the home. He is doing really well and they visit him 2 or 3 times a month (they moved to be closer to where he lives). Hard call but it was the right thing for their family.

    As always, hugs to you and yours.

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  3. Never say never is my opinion. Same with medication (on a lesser level).

    As Boo gets older and taller and stronger I wonder how I will cope as I age. Sometimes this sort of thing is the only way to ensure that the family AND the child get the best care.

    And yes, I do know someone who had to make this decision for her adult child with Autism. It was best for both parties. Broke her heart to make the decision and you could feel the guilt pulsing from her. It was so painful to see her like that. But it was the best decision and her son is thriving. He comes home for holidays and she has the energy to enjoy him again, instead of putting out fires (literally!) all the time.

    Hugs to you and your friend. It is the hardest decision in the world.

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  4. Melissa P.4:20 AM

    Yes, I have known 2 families that have had to do this.
    Of course, it is my deepest and darkest fear for my sons as they get older. What will happen and can I handle it all alone?
    Email me if you want to discuss the other 2 familes who have done this more.

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  5. I couldn't do it... Though it crosses my mind from time to time that if Jaymes does not improve, by the time he's ten, he will severely injure me or his little sister. Here's to hoping things get better with age.

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  6. Anonymous6:35 AM

    I think that as much as it sucks, that sometimes it is absolutely nessecary for all involved.

    Is it ideal? No. Is any of this ideal?

    Short of having well-trained and very strong martial artists living in the home and body-guarding against violent outbursts all the time, I don't think there is another safe option when a person and their treatment team/family are faced with out-of-control violent outbursts.

    Sometimes, doing everything you can just isn't enough. And it's heartbreaking and I feel deeply for anyone who is faced with it.

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  7. Anonymous11:53 AM

    I'm a regular reader, so I'm guessing that the hitting is worse than you let on.
    Is this question also because of related issues with extended family?

    Thought about it, too, because some things have happened that make me worry, not about now, but later.

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  8. All: Thank you so very much. This is such a raw subject; I am grateful for every word you've contributed.

    Anonymous #2, this really is a query for a friend. A non-local friend. Thanks for being a regular reader.

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  9. Anonymous1:45 PM

    Yes... I recently saw a fellow autism mom whom I hadn't seen for a while and thought to myself, "Wow, she looks really good!" She had makeup on , and her clothes and hair looked nice. Then she told me her son had been in a group home since spring, and that it had been awful but she was starting to cope with it. I felt awful when I realized that she probably looked so good because she had never had the time or ability to look after herself before. He's only about 10 or so. I don't know how long he will be there.

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  10. Anonymous3:51 PM

    I am sorry for your friend, because this is something that hits close for all autism parents, that possibility that a need for a home or institution.

    But I am crying with relief, too. Selfishly, I feel like there's another friend still standing with me.

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  11. Anonymous4:43 PM

    I know Susan Senator posted that she is placing her son in residential in a couple of weeks. You may want to ask her opinion on this.

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  12. Anonymous6:09 PM

    I grew up with a slightly younger brother who had a lot of behavioural problems. He wouldn't have been classified as special ed, but his temper and violent outbreaks made him near impossible to live with.

    When he was 10, my parents seriously considered sending him away and ultimately decided against it, which I have always regretted. Besides the obvious stress it put on our entire family structure, I never felt safe in our house from the time he was 9 until I left for college. While I definitely acknowledge a disabled child's right to grow up with his or her family, I truly believe that siblings' right to be safe in their own home outweighs it. I love my family, but I regret the lack of opportunity to just *be* in our house, the attendant resentment that I built towards my brother, and constantly wondering why my parents would decide to put me (and, it must be said, themselves) in danger like that.

    This American Life did a brief story (about 20 minutes) about a family's decision to instituationalize their autistic son last year, you can listen to it for free on the website
    http://www.thislife.org/Radio_Episode.aspx?episode=317

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  13. 4:43 PM Anonymous: I know that Susan Senator considered institutionalizing her son Nat when he was an adolescent, after an almost unmanageable subway outburst involving her (then) infant son, but ultimately decided against it. I thought Nat was now moving to a group home.

    6:09 PM Anonymous: This is why we try so very hard to get help with Leelo when only one of us parents is around. My son is a fully 1:1 boy, which means nothing is left over for his sisters. Reading your comment makes me heartsick, for you and for my daughters.

    Thanks again, everyone. I hope my friend will find some of what she needs in your comments.

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  14. Anonymous12:17 AM

    I'm not sure what it is like on the west coast, but on the east coast there is no such thing as "institutionalizing" the kids. "Institutions" were done away with long ago. Children are placed in residential settings where they attend school and live in group homes owned and run by the centers (typically ABA centers).

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  15. Squidlet, I think you do well by your daughters.
    Boy is also a 1:1, which means sometimes Mr. 1:1 is with dad, so my daughter gets her time with me.

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  16. Anonymous4:28 PM

    I think I "stopped breathing" until the tears began because I thought this was about Leelo.

    I am of course relieved that this is not the case. And understand that it is fear, concern, and painful thought for you and other parents of children with autism. Hell, it is for me because I love the Rosenbergs.

    Ah, damn I am crying again. Imagine the big painful response it triggers in me -- I can't fathom how you think about the issue at all.

    I am deeply sorry for your friend and for any parent who faces this issue and must make such a difficult, painful decision.

    I know that you and seymour are always thinking about your kidlings and doing what's best at each juncture in life. They couldn't do better than that!

    Hugs to all. Especially, my guy.

    Jersey Girl. I am starting to breathe again.

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  17. Institutionalization is not an option, in my head or heart, for our family. Of course we don't have the violent outbursts that others have to deal with daily, but what we do have is a kid who will probably be 6'6" by the time he is 17. I am already wincing around with a sprained wrist and he's only 7. This may be one of those things that you never know until you get there. I am just praying that we never need to seriously consider it.
    That being said, my goal is to have three options by the time Jake is in his teens...just in case... I plan to do all the heartbreaking research before I ever need it so I can be distanced from it..and Descartes will not need to be dragged through the muck of sadness.
    I would like to think that we will continue to help Jake learn and grow, and that there will be a great three bedroom house around the corner we can buy and have Jake live there with an aide when he turns 18.
    My heart breaks for your friend trying to figure out what the best thing is for their family. All I know is that it is not my place to judge.
    I know this is hard on you. Please let me know if you need to talk.

    always your friend-
    jennyalice

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  18. squid1:38 PM

    From an anonymous source who agreed to share:

    My brother lived at home until he was 13 years old and then he was plaecd in residential treatment. He's very hyper and requires round the clock supervision...plus, like all siblings, we get on each other's nerves.

    I'm more than happy to share about it.

    My mother was a stay-at-home caregiver for my brother and it was exhausting, but the decision had more to do with my brother than us. Autism isn't a childhood illness even though autistics often appear childlike and in need of "parental" care. My brother was becoming a lot to handle, but he was also in need of skills that we couldn't teach him. He needed to learn how to navigate the world without my mother...and, since my mother has stepped out of the picture for some complicated reasons, I'm grateful that he did.

    Things like daily tasks, community interaction, making choices at the grocery store, asking for help, paying for things in cash, taking public transportation and so on are all things my brother learned during residential treatment. That's the up side.

    The down side is that my brother left our house when I was eleven...my mother had a hard time with that and never really got over the misplaced guilt. We do have to keep tabs on staff etc to make sure my brother isn't getting short changed or abused - that's par for the course.

    But when i look at my brother now I see an adult and a lot of that is owed to residential treatment. He enjoys going out and having his own life. More importantly, he was allowed to mature just like anyone should be.

    As weird as it sounds, nothing gives me more joy than when my brother sets off after a visit with me. He doesn't cling or get distressed. We just hug and go our separate ways.

    Kinda normal.

    It is a hard decision but one many parents and care givers have to face.

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