My son, Sam, was in the fourth grade, when, after a particularly hard and autistic day, his teacher told me with not a little bit of bite in her speech, “You won’t be able to handle him when he’s a teenager. You had better put him in a group home now.”
That comment has stayed with me for years. He is now 21 years old. He graduated public high school with a certificate of completion – a participation trophy if there ever was one, yet par for the course for kids in special needs programs. This certificate means that unless he enrolls in an Adult High School program or obtains his GED, he will be unable to obtain employment for any job that requires a high school diploma.
He is on year four of a seven year waitlist to obtain services that help the disabled. One of these services for which he waits makes it possible to obtain a one-on-one so he can even begin programs to gain a high school diploma. Anyone who is on the waitlist is in services purgatory: a waiting room for the disabled.
For Sam, this has meant that he has been at home in the last two years since graduation: helping me with housework, mowing the grass, building incredible structures out of building blocks and drawing elaborate schematics of fictional scenes any sci-fi movie producer would be thrilled to obtain.
Yet, he waits. The comorbidity of an additional issue – bipolar disorder – makes his autistic meltdowns even more unpredictable and intense. As the oldest of four, with the youngest five years old, safety has been on my mind a lot as of late. His frustration with simply having autism is a powerful and angry sadness. I have wept even as I have held all 5’11” and 245 pounds of him as his frustration leaks out of his eyes and runs down his cheeks, pooling in his lap.
Inevitably he will ask me, “Why did I have to be born with autism?”
“You are fearfully and wonderfully made, Sam,” I say, tears streaming down my face as well. “You are made by God for some great purpose.”
He inhales, the staggered and heaving sounds that only come when one has been sobbing, calling up some sort of ancient hurt that waits for the opportunity to spill out. He smiled at me, this one time, his chin quivering and tears pooling in his eyes. “What is that great purpose, Mom?”
It was my turn to sob.
Having a child with autism, no matter the age, means you never, ever stop fighting for them. Even if fighting for them means letting them go. Quite by accident, I discovered that despite the waitlist, services are often obtainable for intellectually disabled adults in group homes. A group home is a bigger squeaky wheel than one lone mom fighting the fight against the state and insurance companies.
I talked with one group home provider only to be told that the wait list was 10 years long. Ten years. Usually, the only way a group home spot opens up on a wait list for the intellectually disabled is when someone dies.
That was not a prayer I was willing to pray.
A friend of mine took it upon herself to help me. Her search, combined with my searches (thank you, Internet), yielded a narrow pool of possibilities. Meanwhile, Sam’s frustration with my attempts at homeschooling him (“I’ve already graduated, Mom…”) spilled over into anger that his younger brother got to go to college, even though Sam staked his claim to their room.
After weeks of calling organizations, completing applications, being put on wait lists, I finally called the last organization on the list, praying as the phone rang….Yes, the lady said. An opening was available…for a group home not 10 minutes from me, for intellectually disabled adults with a primary diagnosis of autism. Sam and I drove past the home and he shouted out joyfully: “Wow, that’s a nicer house than what we live in, Mom!”
Sam will be able to still interact and visit us. We will pick him up for church and take him antiquing – one of his favorite things to do. The home has a 24-hour staff that is trained in appropriate therapies to help Sam and others help themselves. It is time that he moves on to the next phase of his life, just like his younger brother did, going off to college.
I fought this group home thing. I did. I felt like I was giving up on him. I felt like I should be the one helping him. I was hurt and angry at that fourth grade teacher for suggesting the very thing I was doing, but then, it hit me: there was an awful lot of the word “I” in this struggle.
Sometimes caring for an adult disabled child means letting him go, passing the baton, and trusting that a hard decision such as changing living arrangements will open doors of opportunity. It means dying to self and knowing that God has this. Second Timothy 1:12b states, “…I know whom I have believed, and am convinced that he is able to guard what I have entrusted to him until that day.” If I believe in God, and therefore believe God (for there is a difference), then I am convinced that He will guard what I have entrusted to Him. Sam. Sam was never mine to begin with; God made him, fearfully and wonderfully.
Sometimes the hardest thing to do as a mom is to give back what is not ours.
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