I'll never forget the moment, as long as I live. It was smack in the middle of the most difficult summer ever. It was Thursday night, after a long, grueling week of managing both kids by myself. My husband finally arrived to the Catskills, and I breathed a sigh of relief, knowing he would take over and alleviate some of the burden over the weekend. Past midnight, in a blur of sheer exhaustion, I went to bed. I was about to drop off to sleep, when my husband dropped the most loaded question ever uttered in the history of mankind.
"Say, what are we gonna do about finding a Home for Dovi?"
Um... huh? Say what now?
I was in complete shock. Where on earth did this come from? Why now? When I was so exhausted and just wanted to sleep, and didn't have a clear head - he had to bring up such a loaded topic? It wasn't a secret that Dovi would one day probably go to live in a group home, but I didn't envision it happening before he was a teen, or older. What was this all about??
My husband explained: "He's only gonna get harder, not easier. And the waiting list to get into the Homes is very long."
That was a given. But why was he bringing it up at this bizarre hour???
Turned out he had a companion in the car on the way up to the Catskills - a friend of his who had a 16 year old autistic daughter. Their house was destroyed. The walls were full of holes. They were physically and emotionally drained. "Don't wait until the toll on your family is irreversible," his friend warned.
Well, that made sense. A 16 year old aggressive autistic person isn't the same as a little 4 year old. A four year old is a baby. And unless he is medically incapable, a baby belongs at home, with his parents.
Of course, my husband did not want to send Dovi to a group home at age four. He was trying to tell me that I should start looking into it, because it could take years.
But I would not hear of it. This was preposterous. Dovi still had a lot of potential. He was so young. Switching my mindset from helping him grow and achieve skills into the mindset of finding a placement for him, at age four, was beyond ridiculous. I told my husband that the subject was closed and I did not want to hear one more word about it.
There was another heavy, painful reason why this discussion horrified me so. My husband has a close relative with severe physical disabilities who has been living in a wonderful group home since age six. This person has thrived beyond expectations and the placement was the best thing that could've happened to everyone involved. While I fully understood the reasoning for the placement, I knew good and well that no matter how well intentioned the extended family is about keeping contact, after a while it becomes too difficult to keep visiting and calling. Even I was guilty of using every evasive reason to keep in contact with his relative and aside from one brief yearly visit or family weddings, I didn't see his relative much. I was worried that if Dovi would go into placement at a very young age, he would be easily forgotten very quickly.
I wasn't a total stranger to the topic of placement. When I went to the support group in my neighborhood, that was all the women would talk about. Their kids were way older than Dovi, and they were tired. I listened to their conversations with half an ear, but it didn't pertain to me that much, so I didn't absorb much. There was one group of women in particular for whom this topic was front and center. One was a mother of a 21-year-old high-functioning son; the others had sons pretty similar to Dovi in functionality and behavioral destruction. They were, at the time, 7.5, 10, and 12 years old. That made more sense to me - there comes a point where the child because stronger than the parents, perhaps even taller, and it takes a huge toll on the family. But at age four? No way.
Still, the next year I listened more closely to everyone's conversations about placement. And the truth left me shocked and shaken.
It turns out, contrary to popular opinion, that group homes are not waiting for our children with outstretched arms and a welcoming red carpet. The struggle to get into them is immense. And going on a waiting list at a young age does not really do much. It's such a matter of sheer luck (otherwise known as Divine Orchestration) to get into one of these places. I knew that my chances would not be very good. The locally run, Jewish, kosher group homes are not falling over themselves to accommodate behaviorally challenging children at all.
My good friend Sylvia was the most active and determined in getting her son Zevi placed. You probably don't remember anymore - you might want to reread the post where I described how she was the first person I reached out to, and her son Zevi is pretty much very similar to Dovi (although they are different in many respects). She ended up really being my guide on how this process works.
It took another year before I gave the topic another thought. By then I was nine months pregnant and Dovi had entered another dimension - the never-stopping, always-destroying something phase. And the struggle to find caregivers worsened. Respite programs were dropping us left and right.
Then little Levi was born. I got scared to be home alone with the two of them. Dovi required 1:1 support at all times. I was constantly consumed with recruiting and hiring people. It was an endless drain.
So I swallowed my misgivings and began doing my research. He was put on the waiting list of every group home possible.
It took two more years of hoping, waiting, days when I knew that I cannot do this much longer and days of unexpected calms in the storm - when things suddenly took a turn south and Dovi's aggression ramped up to new levels. None of the waiting lists were budging. So I had to swallow even bigger misgivings and start pursing a different route: residential schools. The process is even more grueling than waiting for a slot at a group home. Ultimately, it is a better solution for children with severe autism. I will be writing a lot about this.
It is now 4.5 years later from the day my husband brought up that dreaded word. I can wrote books on all that transpired since then. Dovi grew up. He grew taller. He grew stronger. He grew more strong-willed. He grew heavier. He grew more sensory, more needy, more dangerous. And he also grew more delicious. And eventually, we could no longer give him what he needs to grow into his full potential. This child is brilliant and adorable. He can do so much, given the right setting. Disciplining him became impossible. Juggling the needs of everyone in the house while maintaining our own sanity was just not doable anymore.
And so the day came. Several days ago, Dovi left home. He went to live in an incredible facility. He is doing well there, so far. As for myself, I am still struggling to adjust. Caring for Dovi was my central focus, and now I'm left with arms flailing, trying to find myself again, looking for the shreds of the me that existed six years ago before this nightmare began.
I successfully went through the five stages of grief after Dovi's diagnosis, and came out with healing and acceptance. Now, as we embark on this next stage of Dovi's life, I have to go through the five steps again. This is a new kind of loss, and it takes a lot of processing to feel okay and healed. Reopening the blog and reliving the events of the past 4 years is part of that process. While I feel no guilt whatsoever about this big step - we all know it will benefit Dovi immensely, in ways we can't even imagine, the crazy years building up to this point are so packed with insanity and beauty and incredible stories to share, that I want to untangle and examine them all before the memory begins to fade.
And so, I am going to dial back to the time I started this blog. At that time, I mostly spoke about the past as well, about the events leading up to the point the blog started. Even if you've read it all, you've probably forgotten most of it - believe me, even I did!!! but a refresher course is not necessary. If you know me off the blog, or if you're an autism parent yourself, you can imagine what's going on at the point of having a super active 4 year old with non-verbal autism. And the point of the upcoming entries isn't going to be to justify or defend Dovi's placement. It's to make sense of all that happened and relive everything - as well as to be the voice and support for many others walking in these shoes. I will also be demystifying the knotty, murky process of finding residential placement for severely autistic kids. Who knows, this blog 2.0 might end up helping others - which is one of my primary goals.
So buckle up your seat belts and get ready for a wild ride. The waters ahead are getting choppier and choppier. But we will also pass by some stunning vistas and beautiful islands. We will see some rainbows peeking out from behind clouds, and we'll see some silver linings behind other clouds. And you'll feel HaShem's presence in every blog entry.
Bye bye my beautiful boy... as you set off on this next journey of your unique life, I will be right behind you, cheering you on. I can't wait to visit you soon and squeeze you tight.
How can I message you privately?ReplyDelete
drop me an email. Incog71@gmail.comDelete
I tend to end up on your blog while researching enclosed beds for severe autism (every few years). We have twins with severe autism. Next week I am touring Anderson Center with a good friend of mine. It gets me so emotional to think about, but I know it will be the right thing to do in the next few years. Best wishes to you!ReplyDelete
Hello. You commented anonymously and therefore I can't contact you. PLEASE PLEASE email me. Incog71@gmail.com I did not write this on the blog and don't plan to - but that's where Dovi is!!! I would like to talk to you about it. Maybe you'll even see Dovi!? who knows!? Please email me.Delete