Sometimes I can see the truck pull away and only feel a tinge of sadness. There are even some days I feel relief. Other days, I weep. Today I wept. Now that the clozapine has increased, our times together have been so sweet again, and Sunday came all too soon. There are very few things we have to redirect, all of them benign, and Jude is wanting his iPad less and engaging with us more. It’s nearly all I want in life, yet it makes the separation unbearable again. It also makes me question why Jude isn’t living with us. I find myself as a mother to be miserable whether he is well or unhinged. What a curse autism can be!
Jon and I decided to leave Jude at the SSLC for now. The unexpected aggressive outburst just days before his move home made us feel like we escaped a disaster by the skin of our teeth, but I know that’s not the case. God reigns supreme over it all, and just like I told myself years ago, “there are no close calls for the believer, only divine interventions.” I still stand on that today.
Even though our son is doing better now, the recent disappointment was a sober reminder that the old Jude lies dormant beneath his medications. I wanted so badly to believe that he had outgrown these behaviors, but it’s obvious that he hasn’t and the likelihood of this happening again seems plausible. That being said, we felt that pulling Jude from the SSLC was too risky. Once he leaves, if he needs to go back, we have to start the process all over again, and there is no guarantee that he will not be sent to an SSLC much further away from us. So, for now, Jude will live there and come home every weekend.
He asks to come home all the time. Even with our weekend visits, Jude doesn’t want to go back to the SSLC. Of course thoughts of what may or may not be happening there plague me. He can’t recount the activities of his day, much less if the people who care for him are safe. But, after two and half years there, I do believe he is safe. I’ll always wonder if there are workers who are harsh or say things to him I wouldn’t approve. There aren’t any facts that would support that, but a mother naturally wonders when she is separated from her child, especially from a child who cannot communicate well. Surely that is a protective instinct that can’t and shouldn’t be suppressed. At this point, I have concluded that he’s just homesick and unfortunately, that doesn’t make it any easier.
What are the long term plans for Jude? Most recently, they are to keep him at the SSLC, and have Rehoboth Acres operating before he turns 18 so he can live there long term. If you haven’t been keeping up with that, we have started a non-profit that will serve individuals with an intellectual disability in a residential community. Rehoboth means “God given space to prosper.” People like Jude need a safe and fully supported space, often outside of unpredictable neighborhoods, to be successful. After all we’ve been through, we have made the saddening conclusion that those places for people like our son do not exist outside of the SSLC. So, we have taken the huge step of faith to start our own community of group homes on acreage for people with ID who have high support needs.
One day, Rehoboth Acres will be a reality, and we’ll look back on the road of suffering we walked with our son and see that it was all worth it. I don’t think we would have ever considered taking on such a feat had it not been for our situation with our son. The thought of the countless lives our organization will touch makes the pain bearable. God wastes nothing, and for that, I have never been more grateful.
Special Needs Motherhood 
Leave a reply to Grace P. Cancel reply