In my post, “The Hard Things, The Necessary Things,” I spoke about how we were sending our child away for awhile. This was so that we could have 30 days respite. The last year or so has been really tough on all of us. But it isn’t easy to let your child go or to know that you have made this decision to send him away.
Week One
The first week of respite, honestly was a lot of coming to terms with the situation. There was a lot of Netflix binging and escaping into books. I struggled to find any energy to be able to accomplish life. It was our daughter’s last week of summer before school started. I really felt bad that I couldn’t be a fun Mom and go do things with her. It took everything I had just to get through the day. While I do struggle with anxiety and depression, this was more physical, mental, and emotional weariness. I could no longer keep pushing myself forward with.
Our son called crying and begging me to come to visit the second day he was there. I couldn’t because I had appointments- some of which were for him. But he seemed to settle in after that.
Week Two
The second week, our daughter started school and I found myself alone at home. I think I started to realize that week just how much his medical care takes, beyond all of the issues with behavior with Autism. I started to breathe again during that second week. We are SO grateful for this time we have had to nourish ourselves.
At least until “the” phone call from him. One of my biggest concerns about sending him away was that I couldn’t keep him safe. One day he called and told me about his trip to the park that day. He didn’t want to go on a walk with the caregiver and the other child. So she locked him in the car with the windows rolled up on a hot day and took a walk with the other child. To say I was concerned would be putting it mildly. The caregiver was placed on leave immediately and a CPS investigation started. As it seemed isolated with the one caregiver and she was no longer there, we decided to keep him there after visiting him and talking with the Director. We went to see him at least once a week and talked to him almost every day during his stay.
Week Three
Week three it started dawning on me that he was going to be home soon. I was in the middle of lots of IEP negotiations during this time as well. I spent that week riddled with anxiety. The respite place where our son was staying was letting him watch a LOT of TV. I was worried about him transitioning back home and him not getting as much TV. Not getting TV one of his biggest triggers.
Week Four
Week four we spent trying to make the most of our remaining few days. Dinner and a movie, games, downtime. We installed solid core doors and doorknobs with a keypad on them on 2 of the bedroom doors. There should be no more holes in these doors no matter how mad he gets. Week four was a calmer week.
After Respite
He’s been home for a week and a half now. Although the school has agreed to place him out of district at a private school, we are still waiting on the particulars of which one, so he is home with me all day. We are trying to maintain our normal schedule as much as possible so that when we get school figured out we can hopefully get him into the groove with as little disruption as possible.
So far he has transitioned home well. We have had hardly any physical behaviors and things seem to be going well. We are all much calmer. Not so keyed up and just reacting. We have other trials on our horizon. But for now, we’ll appreciate this win.
I didn’t know how this would go. I was afraid of letting go. But after having those 30 days to concentrate on ourselves and each other, I think we are all doing better than we were before went away for respite.
*Extended Respite Care was provided by the State of Washington and their Medicaid/Waiver program without which this would not have been possible. This provides a way for people with disabilities to stay in the home and caregivers to not get completely burnt out.
