No One Talks About Group Homes
I have this recurring dream. I don’t have it very often, but I have it enough to recognize it through the years.
In it, I’m alone in a vast ocean. The sea has picked up and I’m treading water with my head barely above the waterline. The waves occasionally crash over me and I come up gasping for air.
There is no thought involved in this, I just tread water automatically with a tinge of desperation, struggling to keep my head or sometimes even just my mouth above water so I can breathe.
I wake up, never having fully drowned, exhausted.
It’s not a mystery why I have this dream.
I have an almost 16 year old daughter. She is beautiful with a lovely round face and gorgeous ringlets. She has a beautiful smile that lights up a whole room.
She also has severe autism. She is non-verbal, only partially potty trained. She has anxiety issues, rage issues, self-injury issues, she is on seizure medication.
I won’t sugarcoat it because we are beyond that our life with her is incredibly hard.
Her rage issues are very intense and usually completely unpredictable. That means, you can be anywhere doing anything at any time and she can be fine. And then suddenly, out of the blue, she is not fine.
She is yelling and biting, hitting herself harder than you’ve ever seen anyone hit anything.
When that happens, we rush inside the house, we pray the light at the intersection turns green, we desperately circle the wagons so no one sees.
She is big now, you see, the size of an adult and her rages are no longer little girl tantrums. They are big and very loud. They sound what I imagine the sound of someone being murdered would sound like.
We live in fear that someone will call the police, that she will grab someone when we are out. We live in fear because we know that her rages are so incredibly not socially acceptable now, that no amount of “autism awareness” or tolerance is going to cover it.
They scare us and we know the deal, so I can only imagine how others view it.
Before you ask, yes, we have a behavior therapist.
We’ve been to more doctors than I can even remember, we’ve been on every autism elimination diet you can think of.
We have speech therapy and occupational therapy. We’ve done supplements and medication trials, hippotherapy, hyberbaric oxygen chambers, and on and on. Trust me, we’ve done it all.
We’ve done everything, you see, because it wasn’t always this way.
My amazing daughter was born after a rough, pre-term labor filled pregnancy. We were so happy that she was very close to full-term.
We can put all that misery behind us and enjoy our beautiful daughter, I remember (naively) thinking.
She was diagnosed with a speech delay at 18 months. Sensory integration disorder at 2. We were in early intervention therapy five days a week.
By 2.5, her doctors and therapists began throwing around the PDD-NOS label (this was a thing back then, it basically meant you had autism, but it wasn’t really that bad). We threw ourselves head first into every therapy/diet/treatment/intervention you can imagine. And she began making phenomenal progress.
She was reading sight words, she was advanced intellectually, she was coming out of her shell, she would sing songs, and dance like her Barbie movies, she was fully potty trained. We had these glorious trips to Sea World and Disney World.
One day when she was 4 and half, I realized that she could no longer say her “s” sound. Where did it go? I remember thinking.
As the months wore on, I remember speaking to another autism mom and saying “It’s like we take two steps forward and one step back”. “Hmm….” She said, “it’s not like that for us.”
That’s how we realized she was regressing.
Eventually it became one step forward and two steps back until we were no longer going forward at all. To make a long story short, over the next two years we lost everything and more.
By 6 years old, she was no longer potty trained, she was completely non-verbal.
Her attention span had gone from over an hour to seemingly just a few seconds.
She would pedal a bike only to continually stop and look at the bike as if she was completely confused. “Pedal!” I would say, and she would- only, to stop confused again and again.
Eventually she lost the ability to pedal at all. She has no interests now, no leisure skills beyond eating and some sensory activities.
She has pica and eats non-food objects which means we have to lock our cabinets and hide basically everything away.
And now, she rages.
Once again, we fought hard against this thief that came in and slowly took our child away.
We’ve driven across the state, across the country meeting with the top doctors in the field who remain puzzled over what happened to her. We’ve done every test you can imagine. No one anywhere has had an answer for the regression.
Eventually, we put away the photo albums and the home movies. The sound of her beautiful singing voice still cuts like a knife into my heart, so we don’t listen to those tapes anymore.
I have no other way to describe it except it was similar to a death. We had to learn how to accept the new child in place of the old.
The thing is, now we face the monster of puberty.
Hormones have wreaked havoc on her ability to regulate her moods at all leading to even more intense, unpredictable rages. We had only one weapon left in our arsenal, which was medical marijuana. Our state had recently changed the laws and allowed for both CBD and THC to be used. We dove in headfirst, moderately hopeful and yet, months later, we have only seen very limited success.
There is no autism parent’s manual, no set of instructions telling you how to proceed. This is especially true in the teenage years where now it feels an awful lot like driving through a hurricane with a blindfold on.
For the first time in ever, I have come to the realization that we cannot go on like this anymore.
I have two younger children who are struggling hard with the strain of the years now of isolation, the rages, the locked cabinets, the fact that they can’t have friends over. It has become increasingly hard to live in two very different worlds, trying to meet the needs of two typical little boys and one severely disabled daughter. And I am so very worn down.
It has been almost 16 years now of autism supermom-ing.
I did it all because I love her so desperately much and because we had to.
I did it all with a backbone of steel and with very little emotions. There was no time to be sad, there was no option to fall apart. The problem, I guess, is that apparently survival mode only gets you so far…
Eventually, years down the line, something has to give.
Last week, we began the process of looking for a group home for her to live in. Group homes never seemed like an option until continuing on this way has become what is no longer the option. And now the isolation is extreme.
No one I know has gone down this road before, or at least they don’t talk about it.
Apparently, we have bumped up against a real taboo amongst even the parents of children with severe autism (or at least the ones I know)- no one talks about group homes.
I am ashamed to admit that group homes to me always felt like the ultimate failure. And now, for all of my previous bluster, it has been tremendously humbling to find us where we are today…with me falling on my autism-mom martyr sword.
I wish there was more talk around this.
I remember sitting in autism support groups chatting away while the parents of the teenagers and young adults sat mostly silent. I get it now.
For some kids, there is no happy ending and the teenage years seem to be when the great divide is cemented.
For us, right now, we are living what I remember being my worst nightmare. “I don’t want this life for her or for us!”
I want to yell- my daughter is amazing! She’s beautiful and she’s smart and I love her so desperately much that it feels sometimes like my heart might explode. I don’t want my daughter to be anyone’s worst nightmare.
I am grieving for the reality of things, for the loss of what might have been, for the guilt I feel that I couldn’t be superhuman any longer.
I recognize that grief in the waves crashing over me in my dream.
We will continue treading water in that vast ocean of grief because drowning is not an option.
We will cling to that thin thread of hope that one day our heads will be firmly above water again.
Written by, An Anonymous Mother
Finding Cooper’s Voice accepts guest posts from writers who choose to stay anonymous. I do this because so many of these topics are hard to talk about. The writers are worried about being shamed. They are worried about being judged. As a writer and mother I totally get it. But I also understand the importance of telling our stories. And this will ALWAYS be a safe place to do it.
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Know that you are not alone. We had to check our hearts at the door when we placed our almost 5 yr old in a residential school due to self injury. Now almost 5 yrs later we know we made the right choice. I have gotten so much grief over the choice we made but we know he is better off today because of it.
Ten bucks I know why Cooper regresses. A. Migraines. B. She getting flu shots? C. Don’t let them ever EVER stop ABA therapy. She should get it five days a week for the rest of her life. D. Dystonia ( flourescent lights and too much daytime sun.. i have a 22 yr old just like Cooper.. but I figured out some of this crap and he’s doing so good now… Anyways, tordell for migraines helps. Godspeed mercy.. bless u
You have explained yourself so well. You have reached your limits. I don’t judge you. I feel for you. Good luck to you all.
Talking about it: I’ve been there. My brother was the same way. He is now 30. My mother owns a 501(c)3 nonprofit group home for adults with disabilities thanks to our experiences as a family. I am thankful to say that (thanks to some intensive therapy and intervention), my brother has now been rage and violence free for over a decade. Does this work for everyone? Of course not. We need to talk about the hard things, and I thank you for doing so.
So completely honest, painful, and loving. Sometimes I think that only those who suffer really know how to love. It’s like Mother Theresa said, “Love must cost.” She also said, “Love until it hurts, then love some more.” (Words to that effect).
Yes, it is like a death. It is a death.
I pray that you find what you need for your daughter. I pray that there is relief from your grief and that you experience joy. You deserve that and so much more.
I wish you knew how many are where you are. You are not alone.
I could have wrote this about our own life. My daughter is 15 and in the recent years we have also discussed the decision of group homes down the road something I swore I would never do…. I also have two younger normal developing sons and one older than her and this story really spoke to my heart. Sending you so much love.
My heart goes out to you and your family. I understand.
Oh my heart breaks reading this. I wish I could give her a hug. My son is 13 and we don’t know what path he will take but we are always hopeful. Putting her in a group home is not a failure. You are doing everything you can for her while trying to give your boys everything they need. Give yourself a break. You are an amazing mom❤️
I am legal guardian and sister of my 48 year old autistic brother. I know your story. I lived it as his sibling growing up. My parents felt the same way about group homes. I saw their lives were suffering as was my brother. They were getting older and his behaviors were getting uncontrollable.
Posting again. I didn’t finish on last post. Anyway, I I took my brother and assumed legal guardianship. I had him in my home for 6 years. My daughter was born and it became quickly apparent my brother could not live with a baby in the same house. I began looking at group homes. First one was a dud; they knew nothing about autism and it showed. Second home was good for 10 years, but until they began growing at an exponential rate and care quality began to suffer. The third one this far has been good. What has worked for me and my brother is strong, and I vocal advocacy on my part, questioning everything that makes no sense, getting to know his doctors on a first name basis. What helped his extreme behaviors was a combination of thorazine, Ativan and a gluten and dairy free diet. Diet changes alone typically diht help someone with severe behaviors. It did not work for my brother till we added thorazine to keep his moods better controlled throughout the day. I speak to every doctor at each appointment and I’ve learned medical lingo to the point I’ve been mistaken for a nurse. It has worked for him. I must stay on top of it. Once the group home knows you intend to be hands on, in my experience they either wash out or they comply. Also, what are your plans for your daughter when you retire or if you get sick? Are your other children going to be willing to take over advocacy? This has to be considered sooner rather than later to plan for the future before it gets here. I many children don’t want this responsibility as they get older. My other brother and sister have almost nothing to do with my autistic brother. My sister criticizes me fir not having my brother living with me. The truth is, I deserve a life that does not revolve around my brother 24×7. Your other children need their mom and they may resent this current situation. There’s no shame in getting the help you need. If you keep a close eye on it and find a provider that understands autism, that in my experience is half the battle. I run my own blog at ahelpinghandforus.blog which is devoted to adult autism challenges. The sad reality is once autistic kids are adults it is difficult to find appropriate resources. I have found them by being very persistent. I am uploading some strategies that have worked for me on my blog so please check it out. My prayers are with you and your family.
I also wish I could give you a hug. This brings tears to my eyes. I want to shout the same things: my daughter is incredible! She has a lovely soul. She is so very loved!! You are an incredible mother. Prayers. Real prayers for your family not just words on a page. ?
I have been a nurse for developmentally disabled for 30+ years. I want you to know that putting your daughter in a group-home is the wisest decision, she will be more comfortable around like people and she will eventually learn a little. Give it time, and focus on your family at home. God’s Blessings to you. I know it hasn’t been easy. It will get better…
I want to connect with you. I have felt like I’ve been up against the same wall of nobody talking about group homes. My son has been in out-of-home placement for over 5 years and I have yet to talk with *any* of the parents of his housemates. I want to connect but nobody seems willing. It was the best decision for my son and me. It’s not the best choice for everyone but it saved or lives, literally.
I wish a could weed your yard, plant beautiful flowers, and rub your feet. May you find peace. ?
I’m not a writer, never have been good at explaining how I felt on paper. You took all of my emotions and explained them in this article. I placed my daughter in a home when she was 5, this was 9 years ago, she is 14 now. No one talked about it then, even less then now. Somedays I’m ok with my decision, some days I am devastated and make up a plan to bring her home. Either way it’s sad and hard. My only, only, only hope is in Jesus. He helps me though. I will pray that you have peace about your decision.
Wow
What an amazing mum you are to your beautiful girl. I wish you and your family all the best for this incredibly challenging journey.x
I can absolutely identify. My son is nearly 28. Severely ‘autistic’ at 18 months, within 4 days after vaccines. Lost all speech at age 3 shortly after tetanus shot. He began regressing after years of therapies, and much work at home in his teens after dental surgery. And then again at age 22 AGAIN after dental work, increased OCD, tics, prompt dependence, SIBs, inability to sleep, rocking, jumping, spinning, etc. He was potty trained at 6, but in the last year has become completely incontinent. He has no amalgam … He has composite fillings that I recently discovered are FLUORIDE INFUSED. FLUORUDE is a NEUROTOXIN THat I have avoided for 20 years for all of my kids….working on getting biocompatibility testing done. In the meantime … I am doing something else that no one talks about. The Christian ministry of DELIVERANCE. My son and I both go to weekly services. I am noticing positive changes in myself and my pastor firmly believes that we will see amazing changes in my son. I have sat under his teaching for over 9 months. I trust him. I trust God to do what I have not been able to do, so far… Give my son his life back! ❤️✝???
I had come to a point where I needed to inquire about group homes. I was basically told – before 22 it is not an option. I was told that if I refused to live with her before she turned 18 I would be charged with abandonment and neglect. If I refused to live with her after 18 she would have to be facing imminent homelessness. – as in left at the hospital without anyone to pick her up – before they would begin the process for a group home. I thought a group home was my worst nightmare… Needing one and finding there is none available is worse.
Shanti
Did you know that many states will tell parents that homelessness must be imminent before they will put your child in a group home so you get discouraged and stop asking. In my experience, telling the state that when telling them you need crisis services (immediate placement) and pushing hard (I appealed a declined crisis and won) will get you further to the point of getting services. Keep calling, call supervisors, and call the head of the agency that provides services, and jeep calling till they give you the answers you want.