When a Child with Special Needs Leaves Home

I am a big believer that time heals all wounds, or at least makes them bearable.  It is not just time — it is the fact that every day we are adjusting to our new reality, and finding new ways to feel both joy and a sense of purpose.

That sense of purpose is a big thing for me. I had spent 24 years of my life taking care of our severely autistic, “high needs,” non-verbal 33-year-old son named Billy. I was fully engaged, doing everything I could to help him be educated to the extent of his abilities, and also caring for our two other younger children. Thankfully I also had my law practice, an outlet for my efforts when nothing seemed to work out for Billy.  He has a low IQ, and each time he was tested the outlook seemed worse. He also had behaviors. Every phone call from school was to report another incident — I never, not once, got a call about something good. Sigh.

Yet Billy was not prioritized for housing by DDS, which means that the state will not fund his housing, and if we wanted him to live outside our family home, we had to pay for it. In fact DDS told me we were not even close to being prioritized, because my husband and I were able to keep Bill home safely, without a staff.  

The majority of parents of special needs children keep their kids at home with them through the parents’ 40s, 50s, or even longer. Only about 15 percent of  Department of Developmental Services (DDS) clients receive housing from the state when they turn 22, and those tend to be the most difficult cases – where the person cannot live safely on his own or with his parents, usually because of medical conditions or behaviors. The rest are left to their own resources when it comes to housing. Their parents need to know their options and think creatively about how best to provide for their loved ones as they age.

But piecing the financing together is only part of the problem (although it is a huge part, and I will discuss that elsewhere). Having Billy leave home is one of the most difficult things I have gone through as a parent. Billy’s group home opened on June 10, 2016, and the initial roll-out was an emotional roller coaster. Some days I was happy, enjoying my freedom, and thrilled that he was doing so well. Other days I got myself completely worked up over some issue, didn’t sleep, and forgot to be thrilled at how well he was doing. In between these extremes I was living with constant anxiety, wondering how things are going, and just worried. There are so many things that can go wrong.

But then I would see him, and instantly feel better. He looked great, well cared for, and HAPPY. Here’s a picture from his first year at the residence:

Now what was I so worried about? (And to be honest, what am I still worried about, pretty much all the time?)

Nothing about this has been easy. You might think that it would be nice for me to not have to take care of him after all those years, and for my husband and I to finally have an empty nest and be able to do what we want. Of course this is true, and part of the reason we did it. I do not take this for granted. But I had been his eyes, ears, and voice for 24 years, and I didn’t really understand how he could function without me. I wanted to know what is happening with him, and whether he needed anything. If something went wrong, I wanted to take care of it. At home. With our family. Where he belongs.

(That last bit came from my heart, not my head – these two were constantly doing battle those days.)

This is a life-long journey we are on. Finding the money and government supports to help pay for everything is only part of the problem. That Billy had the opportunity to moce out was actually a miracle, made possible by wonderful friends, years of planning and hard work, excellent caregivers and agency support, and the stars aligning. But that doesn’t mean this it wasn’t hard.

So why did we do it? Why did we have him leave home, at such a relatively young age (24)? Don’t think I didn’t ask myself that. But not when we saw him. He comes home once  a week, and he usually looks great He seems to be proud of his independence, and says he wants to go back. That is worth its weight in gold. We did it for him. 

But we also did it for us.  Now that it has been nine years, I have grown comfortable with the new reality.  My internal low-level stress about him has decreased so much that I go for hours, maybe even days, without worrying about what is happening with him.  I still spike when I get a text from the caregiver — that is just my PTSD talking — but it is rarely about something terrible. And my husband loves the freedom.  We know that any day this group home could fall apart, but we can now say that Billy’s new home was a huge blessing to us all. 

Time heals, but a small hole is still there. I have to remind myself to be grateful for that hole, because it means the kids are doing what they should be doing, and because it is how love feels.