Monday, April 6, 2015

Why I placed my disabled child in a group home


This guest post is written by a mom, Dana Linett-Silber, I met soon after we found out that Max had a stroke. A mutual friend connected us; Dana's son, Jack, also had a stroke at birth. He was five years older than Max. Dana was a big source of comfort to me back then. Over the years, we've stayed in touch. And then, I found out she'd made a tremendous decision. This is her story.

There’s a neighbor in our building who will no longer acknowledge us. She used to be friendly, but now she won’t say hello or even make eye contact. Once she let the elevator door close in my face after I asked her nicely to hold it. Her hostility started in the summer of 2008, right around the time we sent our then 10-year-old son, Jack, to a group home.



I’m sure she’s not the only one who’s outraged that we “put him away.” But I don’t care — he’ll be 16-years-old soon and I have no regrets. In fact, there are not many things I’m certain of, but one thing I know for sure is that we did what was best for all of us, and that includes Jack.



Because he can’t talk or feed himself and is physically challenged, Jack needs assistance with every aspect of daily living. He is also unable or unwilling to drink, so he gets all his liquids through a feeding tube (figuring out the reason why, after the umpteenth ICU hospitalization for dehydration, stopped mattering).



When Jack lived at home, we depended on aides seven days a week and sometimes for overnight shifts. Some of the aides were nice to him, but not to me. Some were nice to me, but not so great with him. I was friendly with a few, others gave me the creeps. Dealing with them was difficult in all the ways that managing employees can be and more, but I was desperate to keep the rotation going. With two other kids and a job, I lived in fear that one day someone wouldn’t show up.



Sometimes there were fights between the aides and me over scheduling. One weekend, I suspected that two day aides were trying to sabotage the night aide by leaving their shifts without having properly cared for Jack, in hopes that the night aide would be overwhelmed and quit over his agitated, deficient state. Our home had become a dysfunctional workplace, with all the ugly cutthroat competitiveness and politics that go along with it.



I once received an anonymous multi-page letter in the mail from a neighborhood parent who had observed my son with his aide in the park and felt his care was “not as good as it could be.” Yet this particular aide was extremely punctual and reliable, and it seemed too risky to give that up. In fact, the thought of trying to get through even one day without help scared the hell out of me.



Sometimes I would feel bad that Jack was in his pajamas in bed at 6 o’clock when other boys his age were still active. But the aide had spent hours feeding and bathing him and was exhausted and ready to go home. And I was tired, too.



I know of a family who can’t bring themselves to place their autistic 22-year-old son in a group home. He lives in a big house with his parents, attending a day program and languishing alone in the backyard, swinging on a swing or ripping up leaves. I heard his mother adds vodka to her morning orange juice and doesn’t stop drinking till bedtime.



Now Jack lives in a brownstone on a quiet block with a group of other boys his age. There are several counselors there who work as a team to provide for his basic needs. They’re young and strong and never seem tired. When Jack lived with us, his aides used to wheel him around in a big stroller. Now, his counselors prefer to hold his hand and walk with him everywhere, improving his strength and balance every day.



His home also has a nurse, social worker, den mother and manager. He is never alone, and neither are his caretakers. I never worry that his needs aren’t being met. In fact, I know his needs are being exceeded in ways they never could be when he lived with us. Whenever Jack is off from school, the team takes him and the other boys on a trip to an amusement park, concert or movie. Although we try to visit him every week, sometimes his schedule is too jam-packed to squeeze us in.



Twice a year we hire an aide and take him on a special family vacation so we can all be together and his brother and sister can bond with him. They were young when he lived at home and probably don’t remember much, but I know they’ll remember the good times we have with him now.



Granted, not all group homes may be as great as the one we found. But because Jack will never be able to live alone or care for himself, and we know that one day my husband and I will be old—and, eventually, dead—putting him in one was simply inevitable.



It’s pretty much impossible to have complete peace of mind about your children’s futures but ironically I do have it with him. I’m so grateful he’ll be able to live where he is with his housemates for the rest of his life. And because we had this opportunity and made the decision early on, we all gained so much--Jack included.

Republished with permission from Elizabeth Street

75 comments:

  1. That must have been difficult. The hostility is completely uncalled for. These people don't live in your shoes, they don't know anything. And if that is still continuing after 6 years, well those people must not be very mature. I am glad that Jack and all of you are happy, that is what it boils down to.

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  2. I also place my now 18 year old son in a residential school at the age of 10. he had been kicked out of his private school and the local public schools were warehouses. He has flourished in a residential setting for many of the same reasons you have mentioned in your article. I visit him most weekends and his brother comes up about once every 6 weeks. He will have a much easier transition to adult placement because he has learned to excel in this setting. this makes me sleep more easily at night as age and he has now become bigger than I am.

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    1. How did you manage to get him into a place? My son is 12 and I cant find a place nor would i be able to pay for it even if i found it!

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    2. I hired a lawyer and got mydaughter placed in residential care at age 12 she has moderate to severe autism she is now 26 and is in a group close to home it was the best decision I ever made she is happy and content in her routine and has the stability I could never provide

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  3. I have many things to say about this, being in a similar situation. But I am as yet unable to write them, even though it has been three years.

    For now, I feel your pain my friend!

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  4. Jack's happy and that's what's important.

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  5. If he could walk why was he in a wheelchair all day? He must miss his mother terribly. I hate to be so judgmental but this makes me so sad.

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    1. Life is not perfect and no one needs pity from anyone else. This author made the best choice for her son and her family and continues to make the best choices for her family. I am sad for people when no options exist and nothing is working, but this story gives me HOPE ! That great places exist and there are options.
      Thank you for sharing your story and how you and Your family make it work !

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    2. anonymous. if you don't have special needs children in your home, it is very difficult for you to understand what this mom goes through on a daily basis. I have had friends with children with various special needs. some have kept their children at home, some have placed their children in group homes. i have a special needs child who is a total care and one that has mild autism. i also have a boyfriend who has both physical and mental conditions that are worsening day by day. my boyfriend has been the reason that i have been able to work fulltime to support my family and keep my children at home. I have been through several nurses and aides that care for my physically impaired child. i am now at the point where I am exploring placing my son in a group home.Even with all of the help i get, I am struggling to maintain the best care for my sons and my boyfriend. so please take the time to offer your help to someone in this situation so that you may be able to view life through their eyes. it will change your mind and opinions greatly.

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  6. Thank you for writing. People judge so easily. My younger brother is severely autistic. My parents fought for several different placements for him in the schools but it was never enough. They couldn't give him what he needed, and he was miserable, and we were miserable. When he was 9 they sent him to a residential school for children with autism. It changed his life and enabled him to do things he never would have been able to otherwise...like tie his shoes, write, ride a bike. Yet there were people who refused to speak to my parents because of their choice. They refused to speak to them, maybe not knowing that he spent many days destroying things in our home and (I apologize for being graphic) playing with his own feces. They did not want that kind of life for him. Today he is an adult who lives in a group home and comes home for visits. He loves his time with us, but he loves his time in a structured environment just as much. Sometimes people just have no idea.

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    1. Deb, this is exactly my situation now with my 12 year old son. I'd really like to talk to you and/or your parents about how they managed this.

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  7. The only person I feel badly for is your neighbor. She must live in a very small world.

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  8. Thank you for sharing your perspective! I know it will help a lot of people.

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  9. No two kids are the same and especially no two disabled or ASD kids are the same either. my 25 year old daughter is high end severe autistic, non verbal and acutely unpredictable, I made peace with myself many years ago that, one day, I would not be able to continue to give her what she needs, my 22 year old son is also autistic, he is verbal with an amazing memory (for things that appeal to him) I actually dare to think that one day he will be able to live semi independently with background help. I will always make sure they both get what they need, if I am unable to provide this, then I will strive to make sure they receive the help to make their lives happy, they both need a person centered approach. I refuse to beat myself up, to their detriment! for the past 25 years I have put them both before myself, but I am not a martyr and when the time comes, I will 'retire' happy in the knowledge that I did everything I could. NO ONE HAS THE RIGHT TO JUDGE as no two parents walk in the same shoes !

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  10. We placed our sin Jorge in a group home when he was 13 due to his severe behavioral issues combined with being deaf/blind and cognitively a toddler. When he got to where he could walk, but had no orientation, he was a danger to Cindy and Nichole who were both multi-handicapped. We had no in-home help and my husband is quadriplegic, so it became a safety issue after he hurt me and Nichole (unintentionally). Placing Jorge in a group home was harder than the death of my first child as it wasn't the great place this mom had and was an hour away, but it was the best we could do. Years later, when he wound up in the hospital and we knew he was going to die, we brought him home and since he was no longer a risk to the girls, even though we had no help for him, I was able to care for him in his final months and many wounds healed. I will never think less of anyone who makes these tough decisions....

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    1. This is an amazingly sad story. I have three children with disabilities. No one understands the anguish or the lack of resources unless they are in the same situation. I find myself being jealous of people who only have one disabled child. It's like living in an alternate universe

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  11. Wow. Just wow.

    My heart breaks for Dana and her son. Dana institutionalized her child rather than HORRORS deal with managing in-home staff to keep her son at home!

    The fact that Dana is PROUD of removing her son from the institution once or twice per year to "bond" with his siblings?! No words.

    I'm appalled that Dana has CHOSEN to teach her kids that "appropriate" care for a disabled sibling is NOT AT HOME and that spending one or two weeks a year with that same sibling is "enough".

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    1. Every family has to make their own decision based on their own circumstances. Dana loves Jack so much she was willing to make a difficult decision to give him the best care- that's huge.

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    2. Kate - That is over the top judgmental. I am very glad you are perfect and in a place to judge others.

      Sheesh.

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    3. How the hell do you know whas happening for her? If your going to critisise people in that passive agressive bitchy tone. Some kids require morr care than others. Its no diffrent than if a child was very ill you would take them to a hospital as treatment for that child would be the best thing. As for the home for Danas child is the best thing for them. Your in no potion to judge. For to judge you would need to have been through this and be perfect. It seems at the very least you are no where near the latter. (i dont know if my illness refence was rude. If it was i am very sorry. For i did not mean to be)

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    4. You are very mistaken in your generalised beliefs. I've worked while studying in direct care in group homes and later as a social worker servicing aged and disabled persons and discovered that particularly where there are high level physical care needs. It was always a safer better option for the severly complex care disabled person to be effectively managed in a good facility. Plus earlier entry resulted in better adjustment.Home carers risk burn out and injuries to both them selves and the disabled in being less equiped to deal with all aspects over time.Furthermore,the disabled often are more content in a calm envirinment with more stable health than in a well intended family situation with stressed carers with limited capacity in not being staffed,equiped like a good facility. It doesn't mean that the family don't remain involved either.There is no point in the family sacrificing themselves for a poorer situation re the disabled persons needs to play in the myth of the family environment ideal just because in other types of disabilities it can be.You need to realise in these high care needs situations some families with lesser capacity to manage end up with increased fatalities too.
      Seperately earlier admission to residential facilities can be very much more appropriate too with complex behavioural issues as well. It takes greater insight and reasoning capacity for parents to evaluate their childs needs and other family members needs to recognise residential placement is the optimum. The greatest problem is that too many parents fail to grasp this trapped by the family /duty myths perpetuating suffering for all.Parents need to be able to distinguish between these extreme scenarios and where appropriate input from outside rescources and adaptations can modify problems increasing everyones functioning.

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    5. To be this judgemental and critical of someone you don't know is disgusting. Raising a child with severe disabilities is very difficult. And it's important for parents to do what is best for that child, their other children, and themselves.

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    6. Kate, you're a terrible person. There, I said it.

      Because my attack on you just now is far better founded than your attack on the author. If you disagree, do so with empathy, compassion, or at least logic. Instead, you showed a complete unwillingness to acknowledge the suffering of others, or that there could be compelling reasons for institutional care for an individual that exceeds the capacity of their family.

      I used to tutor severely autistic children, but I don't pretend to know what it is to go through this yourself. However, my experience is that it can be so consuming for even the best of parents, it's borderline abuse to the autistic child's siblings. Sometimes there isn't a perfect answer, but there can be very good outcomes, and I'm grateful to the author for the courage to tell her story.

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    7. You have NO idea unless you live this life it's very very hard.

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    8. Kate you must be a kkkonservative Trump supporter. I had no choice but to also place my 13 year old autistic son recently and we are all better off so take your judgemental conservative ass and fuck off. I hate people like you more than I can even express!

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    9. Dear FuckoffKate,
      I am also struggling with the tough decision of placing my 22year old son with DS in a group home..I feel like I’m placing him up for adoption even tho I know that is not the case! He may even be happy about it feeling like he is moving out on his own like any other “normal” 22 year old would be doing at that age! Parents of disabled kids all have difficult decisions to make throughout our kids lives.Sounds like we both had/have difficult decisions to make..
      Do I love my son with all my heart, YES!!!
      Do I still feel guilty about placing him, YES!!
      Am I looking towards his future when I’m no longer here, YES!!
      Am I a conservative Trump supporter, YES!!!
      So I guess you are wrong that because someone is conservative that we are all a bunch of judge mental assholes that need to F off!!
      Who is the one being judgemental here??

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    10. Hi Kate, I really don't understand why you are so judgmental. Do you have any disabled child to look after? If not then why you are here? There must be a reason you judge other people's decision and I guess it is your life. Something is terrible wrong with your own life. Just be honest to yourself. And please "Do not judge, or you too will be judged" Matthew 7:1-6

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  12. Thank you for writing this. My son will likely end up in residential care at some point. He has severe cognitive impairment and some aggressive behaviors which have hurt me quite a bit. It is a shame people see fit to judge something they have not experienced.

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  13. Thank you for sharing. That was very moving and beautifully written.

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    1. I feel everyone should do the right thing for their Child or Adult who is on the Spectrum. We as Parents do the Best we disregarding o ur Sons& Daughter's. Don't let people's Comments get you down. Prayers for all who read the Comments. 🙏💞🙏

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  14. Kate, until you have experienced caring 24 hours a day for a child with profound disabilities, you cannot imagine the stress and pain. To judge Dana is to refuse to see the truth: she loves her son, her family and herself enough to have made this painful decision. I am proud of her, and I don't even know her.

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  15. I wonder if the author, or anyone else who has found residential placement, would be willing to share how they found such a place. My son, who is non-verbal and can be quite aggressive is only 8, and we hope he'll be able to live with us for a very long time. That said, we know that we won't be able to care for him forever, and I fear that if his aggression ever became so bad my daughter was in danger, we'd have to make some difficult decisions. I'd rather get ahead of it and know what was available, but I can't seem to find any place that takes kids with both severe cognitive and behavioral challenges.

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    1. start with your local welfare office. they can give you referrals for community agencies that can help with the waiver programs that will assist in paying for the community homes. then visit the community homes several times before deciding on placement

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  16. It gives me hope to hear that there are good places: I still care for my severely disabled 18 year old at home and I haven't even managed to find suitable respite! I can't understand how people can be so judgemental about the actions taken by this writer. It sounds like her son has a really good life now and her worries about his future are greatly reduced. Many other families would love to be in this position.

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  17. Nobody can imagine the task of caring for another human being 24/7 unless they've had to do it. Those that judge usually have absolutely no clue. The parent-child relationship is reduced to nurse-patient, and the sibling one to 'carer-in-waiting'. Each of us, in our own way, does what we believe is best for our special needs children, and for the rest of our family. I see hope in this womans' post, where no hope previously existed. Bravo for sharing.

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  18. This mom shared the following info on the group home her son is in: The home Jack is in is a community based home in Brooklyn, New York, that was created by a mother whose son was in Willowbrook, the infamous institution that Geraldo Rivera exposed to be a "snake pit." She is a very dynamic woman and she lobbied in Washington for funds to create small, community based homes for disabled children and adults. We are so lucky to have found out about her and her homes through my husband's aunt who lives in the same community. We put Jack on the list when he was a baby "just in case." When a spot came up we knew we should take it, that another one might not become available for some time. (There are no open spots right now). As it happens, after Jack got in, budgets were cut (I think state and federal but not sure) and unfortunately it is so difficult now to find a spot. I think they raised some money privately to accommodate some more people in their community that were on a waiting list. I know there are state lists you can get on but the quality of the homes unfortunately do vary and so much work is needed to create more quality residential settings. I feel like we won the lottery and would just advise people to google for information in their particular state and put your child on a list. You can always say no if a spot comes up but there must be some other good options out there. More advocacy and money is needed because even if caregivers commit as long as they possibly can, the time will come when someone who can't take care of themselves will need placement.

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  19. I recommend the book "standing up for james" by jane acra on this subject

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  20. Sorry the author is Jane RACA

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  21. Dana, thank you for sharing this. It sounds like you have made a good sound decision for your son and your family. It is sad that you face such backlash from your neighbors. Why do we have to judge people when we don't walk in their shoes. Hmmm?

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  22. A disabled adult growing old with his parents is tragic. It is vital to make your son's world as big as it can be! You made a wise and loving choice. Your neighbor is cruel and needs to find something to do with all her extra time.

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  23. Listen people, the bottom line is that this child was discarded because he is disabled. Help or no help, this "mother" was never going to raise this boy. Her decision to kick her son to the curb will permanently damage her and her so-called family members. Thanks to her, neither of them will feel worthy of unconditional love, overcome their abelist prejudices, or learn how to commit to the responsibilities they take on. Taking the easy way out of problems is usually a big mistake and, as this woman can attest, not one likely to go unnoticed by the community in which they live. As long as people continue to conceptualize a family as being a unit of people who share a home and build a life together, the costs of a person's decision to become a "run-away parent" are most likely going to include having to cope with being reminded of how selfish and cruel it is to your entire family unit when you toss away some of its members.

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    1. Seriously? I'm just going to go out on a limb here and assume you don't have a severely physically disabled child of your own to care for? As the parent of two speical needs children adopted from foster care....I can tell you in some situations placing a child in a group home is the BEST option for the child and the family. You are clueless!

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    2. Tears fall from my eyes as I read your harsh statement . I am a mother of a severely disabled soon to be twenty one year old daughter . You will never understand the depth of love one has for a child who remains a child for life and the heart ache when the day comes when you know you will have to entrust another with their care becouse you know you will not be able to physically care for them . Let me set this straight most parents who place their children young adults continue to see them daily have emtional guilt and yet know that what ghey do is give them more than limit them . My daughter is my world I live her with all my strength tonight I have changed her diaper six times becouse she is on medication to unconsipate her . She is afraid of the cramps so she tries not to go . She slso has a bladder infection becouse of a change in meds that help her anxiety which is sever becouse of her Autism , the med trigger a side effect do for over two weeks she has been tormented by out of control OCD not sleeping for three days in a row and than out of exhaustion finally falling asleep . She was so nervous she could not relax to urinate so her bladder would clamp off than she would have a large volume accident beyond what her diaper could contain . I have been beside her day and night .I am developing panic attacks becouse I feel so helpless . Her doctors are working to get her health back on track., it has been a hell that she my daughter has gone through before and I by her side . To tell a parent the ghey are less becouse they decided to included others to help in the journey of caring for their s ed very disabled child is pure ignorance and heartless . I told my daughter that like her brother whom left home to have his own life that is what I want for her that I hope she has this I will see her everyday and will be happy that she has a life outside of our home and just as her brother visits she will also .My son is not disabled he is 22 has a successful business he started ghat now employed nine individuals . I am proud of him he has not had a easy life he missed out on any normal no picnics at the beach and the lists is long he cries sometimes that life well isn't fair he remembers growing up fast becouse I only had two hands and ghey were busy carrying for his his sister . Hold your judgement you have never had a sister who decided to walk out of ghe bathroom naked in front of your prom date or finger painted in her feces on the patio becouse she ate something that didn't set well . God help you for your harsh shortsighted comment . I plan on placing my daughter way before I have aged so that she can adjust while I AM Alive TO Help HER Feel Safe . I think nothing could be worse than dieing leaving yourchild to adjust to a new life without your support and love reassuring them that it will be good they will have success .

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    3. Wow we have 3 disabled children. As we are getting older & they are too it's becoming harder. We have wondered if we will have to place our most severely handicapped child in a home even though we don't want to. Unless you've lived it - you can't say anything. Makes me wonder if you've ever had to take care of a person 24/7 for years with no change? I doubt it!

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    4. I couldn't have said it better. Like someone else commented its borderline abuse for the siblings. My 1 year old got bitten by my 10 year old autistic son recently and left a purple bite bruise on his arm. Constantly shoving him and slamming the door on his face (literally) because he didn't want him in his room. He's a danger to himself when he escapes from the house through a door someone forgot to lock or while im out doing laundry or through an open window etc. He ends up in the middle of the street not caring for honking cars. Im not sure sometimes if the cops will find him in time before something terrible happens to him. Sometimes I imagine the worse. He has set himself on fire also. Has done the feces thing, pees in his room on cups. Writes on the walls, destroys our home, I am worried about my mental health too. I'm emotionally numb at times. I dont react anymore and when I do I'm overly emotional. He continues to live with me but I will not deny I fantasize about a normal life, doing normal family things being able to work and feel productive.

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  24. I stumbled onto this blog while I was googling something for my work. I am a caregiver in a group home for adults with disabilities. There are six adult residents in this home, with various mental and physical disabilities. I just wanted anyone reading this, for whatever reason or decisions you are struggling with, to know that there are people working in these homes that love your child/sibling/loved one very much. This work is not high paying and can be as stressful as you would imagine, and there are many stories about sub-par care and possible abuses. But I have found it to be untrue. The people I work with are all so big-hearted and compassionate. I just wanted you to know that. We often discuss how difficult it would be to care for a special needs child 24/7 - none of us could do it, and we are professionals. We get to go home, and that's probably why we are able to do it. Anyway, I hope my comment brings relief or comfort to anyone facing a difficult decision.

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    1. Yes thank you im a mother of a 10 year old total care son but unfortunately i had brain surgery and since has been very challenging to care for him i really needed to hear this thank you

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    2. I work in residential disability too, and I can honestly say that even though the pay is not the best the job is wonderful and rewarding. I have seen parents who feel incredibly guilty about their child leaving home, but often we can give them the care that the parents are unable to. Not every person with a disability should live with their parents forever. Group home Living is not for every child, but very beneficial for some.

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    3. yes thank you i have my grand baby she is 12 and she is very disabled she dont walk or talk 24/7 care i feel quilty cause i cant give her what she needs i what what best for her so i need help on maybe its time to find her a good place to live so she can get what she needs im not getting any younger Help what to do

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  25. As usual, the hostile people who judged you for this didn't jump to volunteer to adopt your son. You have my sympathies, and my respect, for being brave enough to do what was best for everyone, your son included, in the face of such inevitable hostility.

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  26. As someone raised with a special needs child in the household I can say from experience that it is often best to institutionalize such children for the benefits of everyone else and ultimately the child who benefits from 24/7/365 specialized care. The relative's child raised along side me when I was young had severe behavioral problems and developmental delays leading him to constantly act out to the point of getting himself kicked out of nearly every public elementary school in the county and destroying the entire apartment if denied the simplest request like a cupcake before supper. My mother,who was his legal guardian and had started adoption proceedings,was actually advised by his therapists to get him OUT of our house, because love was nowhere near enough for a child as disturbed and impaired as he was. After 3 years of nearly no sleep,having to quit her well paying job and go on welfare, and being shunned by family and friends alike she finally gave in and placed him in a facility when he was 11 years old. I cannot tell you the peace and relief that swept over our household. My adopted brother himself was happy to be away. He enjoyed his new bucolic strictly regimented surroundings immensely with the constant attention his condition required.Sure the same people who once ostracized our family due to his problems shunned us even worse once he was sent away, but there are no regrets.

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  27. I struggle with this often. My son is 13 and though not physically disabled, his intellectual disabilities and behaviors are only making things worse as the years go by. He was 2 months premature and Im a single parent so Ive been dealing with everything from day one. Somedays I feel I might have a heart attack while my son is yelling, throwing things and not listening to me at all. My heart breaks at the thought of him being with out me and how do I entrust someone else to take care of him? But I know ultimately my health suffers and maybe someone can work with him to control his behaviors, nothing I have tried works.

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  28. Wow, I am pretty amazed by the harsh responses here. I have a kiddo with disabilities, and before she was born I actually ran a group home for adults with developmental disabilities!

    Most of my clients thrived in the group home. Not because there was some deficiency with the parents of these individuals, but because they went from a home where there were few hands to help, to a home where there were MANY hands to help! My clients were able to become more independent, make friendships, visit new places and some even got jobs or went to school. They were unable to do some of these things in their parents homes, just because the parents were too overwhelmed and had too few resources.

    I'm proud of the work I did there, and had good relationships with the parents who sent their children to us. I learned a lot from them, and it served me well when my own daughter was born with disabilities. I don't think we would ever need to put her in a group home, but I don't have any ill will towards parents who do. I get why they do it, and until you've been in their position I'm not sure you could really grasp the reality of their situation.

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  29. I really don't understand how anybody has the unmitigated gall to judge anyone when it comes to a situation like this. It's a heart wrenching decision to place your child in a home and then for anyone else to make you feel like a horrible parent for doing so is just so unbelievable to me. I have a sister who was severely brain damaged at birth, we had her at home until she was 16 years old. I was the baby in the family and I do not have fond memories of her. As she aged she became more aggressive, I was pushed down the stairs more times than I would like to remember. I was almost drowned once while swimming because she decided to sit on top of me while I was underwater. She was always destroying things, running away and would go into other peoples homes and scare the hell out of them. It's like having a two year old in an adult body who is uncontrollable and it wasn't fun. As far as I'm concerned I never really had a sister I couldn't have conversations with her, she did not have any type of feelings for me, I could not go to her with problems or even fight with her as normal sisters do. It takes a toll on your marriage, it takes a toll on the other children in the home. Unless you have lived this shut your mouth you have no place and no right to even comment on this!!!

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  30. As a pediatric home health nurse I understand the struggles parents of special needs children face. Glad the found a great facility because there are probably more bad ones than good. In Texas Medicaid provides coverage for in home nursing for the kiddos. Unfortunately it is often abused. I've worked in many homes where one parent may not work, are home all day and maybe spend 5 minutes the child. I've come to the conclusion its a bonding issue or ineffective coping... I don't know. In any case it totally changes their world. I think it is both a selfish and selfless act. Selfish in a good way because you have to save yourself before you are any good for anyone else especially the siblings. For all of the previous judgers they have no idea what these families go through. One of my mothers couldn't see her dying mother who lived across the country because she couldn't leave her kiddo. Some people have no idea yetquick to comment and judge

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  31. I have a handicapped granddaughter and I kept her this week end and totally see what my daughter is going through everyday. Is there any homes in the Houston area that are good. As she gets older she is very hard to handle.

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  32. The cruellest thing that you as a parent can do to a special needs child is to have that child with you for all your life. (The child will outlive the mother)
    What happens to that child then, when her mother passes away?
    The child has spent every waking moment with her mother for the past 40 years and now the mother has died.
    What will it be like for that child to then be placed in a home? She has just lost her mother and now she is removed from her surroundings into a strange environment....without her mother too.
    I had a special needs aunt who lived with her mom until her mom passed away. My special needs aunt was then placed in a home and she was not long there when she died. WHY? She was not sick. But she was pining for her mother. And her mother was not coming to see her ever again because mother was dead! She had no understanding of what was going on. That is cruel. That is short sightedness.
    The right thing to do is to place your child long before you are going to die. Let her adjust to her new surroundings. let her settle down and start to enjoy all the extra benefits she will experience. Bring her home for weekends and holidays. Help her to get use to the separation. Her placement home must become so familiar, second home to her. while she still has you with her to make the transition easier. Because one day you will not be there any more. But by then she is completely at home in her placement home.
    Anybody who judges parents with special needs children and the decisions we have to make, you are not thinking further than your nose! In fact you are not thinking at all. YOU EXPECT THE MOTHER TO KEEP THE CHILD FOREVER BUT....WHAT WILL BECOME OF THAT CHILD WHEN THE MOTHER DIES?????

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  33. I have found that around me, my family and friends all have their opinions concerning my son and are quick to share them with me. Yet, these very people, Do not ever offer to take him to a movie or invite him for a vist, nor do they ever write a simple card and mail it to him. I was once trying to raise funds to get my son an IPad for communication, my sister scolded me for "begging". After someone graciously won and donated an IPad to my son, I found out that the same sister who scolded me owned an IPad that was still in the box, for two years. Her husband gave it to her as a gift, therefore she would never part with it. I am reading these posts because everyday I wrestle with my emotions trying to decide where would be the best place for my son, home or in a residential home. I am sick with worry, my head hurts and my eyes hurt from crying, and I can't seem to find something that will help me decide. I'm so glad that there is a mom who has made a decision and has a level of peace with it.

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    1. Thats sad your sister isn't very suppportive. And you're totally right on how people like to make remarks on how they would be able to deal with our kids better than us or what we are doing or not doing, how its my own fault he behaves badly for not spanking him. When he isn't vocal and he doesnt understand language very well. Yet for example (in my situation) my mom never picks him up or does anything with him. And I'm in the same situation not knowing how much longer my family (siblings 1 & 11 year old, husband) and I will be able to live this way with my son of autism 10yr old. Anyway I feel your pain and what you're going through.

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  34. I often times hate my autistic son. I am embarrassed by him, and I hide his diagnosis from family. He has ruined my life, and my marriage. I can't stand him most of the time. Autism is not a gift, nor is it special. There. I said it.

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    1. It is beyond difficult, no one understands except people in the position as far as I can tell. The heartless lack of empathy for the parent is nearly the worst part. I love my daughter beyond words, however, our lives are literally changed to a point where even going out the door or doing a shop is like a form of torture. Changing diapers and the like are equally distressing as toilet training seems a challenge that could simply never be taught in our daughters case. Each and every single thing is a massive ordeal or lying on ground screaming and zero love or feelings are apartment apart from dislike of anyone and I mean everyone. The violence toward parents and siblings is frightening and only going to get worse. Regressive autism is like having your daughter stolen a little more every day and seeing every little connection and feeling dissipate slowing into a sad meaningless life. It is heartbreaking but the opposite of care is equally as depressing and empty for all. It is a really black life for us parents and to think all we get from society in general is condescending looks and comments. What could possibly be harder for a parent than having a severe autistic/mentally handicapped child who rules your every waking minute with all your life and future dreams shattered with no hope of positive improvement. This is a depressing post - I know. Unfortunately that is what many of the parents in this position experience every day. Autism has no positives - none in ouror our daughters case.I knew when my shir was 18 months old our lives were going to be shredded as I seen it in a relatives life when I was young. Always felt for the family. 2 years on it's is worse than I imagined for us and only shittier it's getting. Fuk autism. People say they would not change their autistic children? That is hard to believe and to me is just patting yourself on the back.

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  35. The place you found sounds amazing...could you please tell me the name and location of the home?? Thank you, Jen

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  36. Their is a Residential Care Home in Waco Tx for children with special needs that only takes in 3 children and they work hand in hand with parents.The homes has 24 hour care and has a 24 hour visitation option for parents to come any time.The also offer respite.Call them 469-999-4126 the owners name is Chloe

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  37. Their is a Residential Care Home for children in Waco texas that provides 24 hour supervised care.And the staff are all specialize care giver.The home only takes 4 children in the care home.The home is non-medical.And it also offers parents an open door visitation open.The owners name is Chloe.

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  38. How about keeping your kids and excepting them for who they are. I have a disabled child and I will never run away from her. It's a challenge everyday but it's my baby. People just want their own lives easier. But put your self in their shoes. What if one day your in a car accident and your worse off then them and your family drops you off at a clinic and waves good by. People these are your children except them for who they are. These kids need their parents.

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  39. I just found out my son has DMD. I'm a single mother and he is my only child but already its becoming hard to take care of his needs such as appts and limiting his exercise. He cant exert himself or else he risks getting more muscle damage!I dont know what to do. I know I can be there for him but its so hard at times when I feel so alone! I can't count on my ex partner or family.They all have their very busy lives. I'll pray to God to keep me strong, but at times when not a single person is there to say it's going to be ok I feel like giving up. Like maybe I should move on with my life and start a new life! But on the other hand its not my sons fault and he doesnt deserve this

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  40. I've had a ton of health issues and taking care of a significantly disabled child alone for years. Nursing is inconsistent so i can spend days with no sleep tearing my body up. I've had multiple hernias from lifting 80 lbs of a post seizing child to move to another room. I have arthritis. I cannot go to school. I cannot work outside the house. I have no retirement and no health. For those of you criticising these parents get off your @sses and go take care of one of these kids for a 24 hour shift 5 days straight. Maybe you won't be insensitive a judgemental. You wouldn't make it 5 days, not even 2 days with mine. Go troll in the perfect parents section of the web. We are being realistic here. You think my kid loves having a fatigued anxious constantly depressed mother?

    I'm just not looking forward to the trolls I'll meet when mine is loving happily in a home where the are many hands and actual social time. They are kids, they want lives and their own friends too. People who judge are not visiting her or helping me. But the they are. Judging.

    Thank you parents for letting me know I'm not alone.

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  41. I am a recently divorced mother of a severely autistic adult son. My husband and son's father deserted us a few years ago because he just could not take the stress of dealing with a disabled son. I have been abandoned as well by my family because they do not want to have anything to do with my son. Some of my friends have been verbally supportive, but also stay away from having contact with us. We have some help with aids and a day program when it is open and when the aids show, but it is always inconsistent. I am almost 60 years old and physically and emotionally exhausted. My son needs 24/7 care and supervision since he cannot do anything for himself. He also has behavior issues.

    I love my son more than life and it was the hardest decision I have ever had to make, but I found what I hope is a good group home and will be placing my son there very soon. I realized that I can no longer take care of him and fear every day for him if something happened to me. The decision to place him was to protect him from being emergency placed and thrown into a home without his mother to help him adjust and let him know it will be okay. By placing him now I can be strong for him and help him adjust to his new "brothers" and new home. I cry constantly because the thought of "giving up" my baby is unbearable. However, my son is an adult and needs to adjust to being one and living a new life without relying on "mommy" for everything. Our disabled children are stronger than we know. I try to take comfort in the thought that my son will be better off in a home with "brothers" and people there 24/7 to care for him, rather than with a physically and emotionally burnt out mother who will not live forever. I will visit him constantly and call him everyday (he is not conversational but he can hear my voice and know I am there for him and love him.

    To anyone that has not walked in our shoes, shame on you for judging us. You have no idea the enormous and excruciating pain that occurs when you find that for your child's best interest and protection you must place them. I would move heaven and earth to spend the rest of my life with my son. My wish is to one day die peacefully in his arms. However for parents of disabled children these are dreams that will not come true. I have taken care of my son for 25 years around the clock. It cost me my marriage, my family my career, my health and some of my friends. How dare anyone say I am a bad parent because I am now placing my son. My actions have proved that I am the best parent because I put my son first and by placing him I am still protecting him even though I feel like my heart is breaking. To any parent out there that feels guilt because you have or will have to do the same one day I say you are only continuing to do what is best for your child. To any people out there who judge us I say just mind your own business because you do not know us, our children, what our lives are like and just how much love we have for our children.

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  42. My son is 27 and very autistic and verbal.He is a wonderful smart loving man yet when he is angry can hit and destroy things.Looking at group homes has been a nightmare t many people in the houses or people just sitting in front on the TV .Seeing these things scares me more and more yet there seems to be no other option.

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  43. My son is almost 12. Life is hell. I think about killing us both. My husband will never let me put him in a home. I’m doomed to cleaning shit of everything and patching holes in the walls the rest of my life.

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    1. Just saw this. I know it's a while since your post but I just hope things got better for you. You're not alone, many people deal with these hardships and not many people understand how difficult it is to go through them.

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  44. I will also like to speak with someone about this I have a 15 year old artistic son and this is stressful to maintain. One due to teenage hormones and just alone with his condition. I am a single parent with 2 children my daughter is 3 and will be 4 in a few weeks. It’s hard to keep a job due to this and even thought my daughter helps with him and we love him it shouldn’t make our lives difficult when their is help out there. His side of the family do not help at all. And I barely have help on my side. I know that it’s my responsibility to take care of both of my children but it’s hard to do like this. I feel like he need help in ways I can’t help him. And I don’t know how to. I have done the best I know how but it is very stressful to deal with again, so please I would like some info on places to get help from to better his life and ours.

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  45. Thank you for sharing your story, and also for the supportive comments from all of the other parents who are facing or who have faced similar decisions! To the others of you who are critical without any personal experience, I won't say what I really think of you because you're not worth my time.

    With that being said, I am suddenly faced with making this very same decision within a matter of days for my 28 year old, severely disabled daughter. "A" was very premature, has cerebral palsy, and requires full physical care. She is verbal to a certain degree, and cognitively much higher functioning than she is able to express, though not age appropriate. She is genuinely a very social, friendly person with some behavior issues, though generally they are pretty well managed and controllable. She does have a long history of respiratory issues, and from January to June, has many respiratory infections that often require weeks at a time at home.

    Long story short, a room suddenly became available in a very good residential care home that seems to meet all of her physical and medical needs. As there is very strong demand, this is why me decision needs to be made very quickly. While I have figured that at some point I would need to place my daughter in a home due to my inability to care for her, being faced so suddenly with the decision is overwhelming. I have inquired with her caseworker in the past about looking at homes, in preparation for a day that would inevitably come, so when this became available she acted quickly to potentially secure if for my daughter.

    I am a single, working mom, and my daughter requires 24/7 care. While I am more fortunate than most to have an understanding employer (to a certain degree), providing care for her is becoming extremely difficult. I rely on my 80 year old mother to help me when my daughter is home sick (which is a lot), and then have scattered and unreliable care when she is not. My daughter "A" currently attends a wonderful day program, though they can not meet all of her medical needs.

    I can't tell you how many nights I lose sleep worrying about what would happen to my daughter if something were to happen to me, or how it would affect my oldest daughter if she felt responsible for her care. While I know that she would do her best to oversee care for her sister, she has not lived near her for sometime and is no where near aware of the daily care required for "A". I feel like it would almost be cruel for both of my daughters if I put the burden on my oldest to transition "A" into a home, and also on "A" if she didn't have my guidance to help her transition to a home while I am still able.

    The reality is that I am faced with having little to no home care for my daughter within the next few years, as my mother is aging and it is taking a tremendous toll on her as well. (The guilt I feel on that subject is a whole different subject.) My greatest fear is that if I do pass up on this opportunity because I am not yet ready mentally, that I won't ever have this opportunity again. I am told by her caseworker that this is basically the "Ritz Carlton" of homes for people like "A", and that the rarity of one becoming available anytime soon is very high.

    I'm not quite sure what I'm asking, or if I'm asking anything at all...just looking for some feedback or advice from others who are in or have been in similar situations. For those of you who haven't been in my/our shoes, please spare me your criticism because it means absolutely nothing to me.

    Please understand that "A" has been my life for 28 years, and I love her with all of my heart. The tremendous guilt I feel for possibly putting her in a home is enormous, but I also realize that NOT putting her there now could mean a much worse future for her down the road. :(

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    1. May I please ask the name and location of the home. I am looking for one for my daughter as well.

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  46. Hello, I feel this might be the same situation for our son. He has been recently diagnosed at mentally 4 years old he is now 9. He needs consistent reminders to do this or that. But he is potty trained. He needs his food by gtube. Because he doesn't seem to know when he is hungry. Although he does eat a variety of foods by mouth This is a big concern for us. As he fights us. As he gets older. What happens that one day when he hits us? Albit by accident. But when? This scares the hell out of us. He isn't violent by nature. But when he refuses bed time he throws things. We often wonder if this will be a routine for him when he is 15, 18, 22? Your story truly hit home with me. As we struggle with our son now at 9. Is this our sons future? We have always stated that he should live at home as long as we can humanly can. But we are older parents and getting older. Thank you for your story. I know in some aspects our son is an active kid and does everyday kid things! But for everyday stuff he struggles bigtime.

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Thanks for sharing!



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