Will He Be OK?

Will He Be OK? October 8, 2014
A rare moment of holding hands as we leave his school.
A rare moment of holding hands as we leave his school.

The thoughts are difficult to shift aside in the waning hours of the night. They have been building up over the day, over the years even, and they settle in heavier when he struggles with nighttime anxiety and sleep. It’s easy to lose oneself in the day to day, because the day to day takes all the energy you can muster. But since the minute he was born, we have been in an inexorable march towards an uncertain future.

I can’t keep hiding behind the day to day.

And while some days I hold on as hard as I can to the notion that it will be ok, that God is holding Lil D, and we will figure this out – other days the thoughts of all that must happen, all that has to be done, all that we are hoping will happen, weighs down on me in an uneasy, unsettling barrage of questions:

Is it going to get better? How will we manage as he, and all of us, grow older? Will he be able to live apart from me? Will I ever be able to trust anyone to do for him what I do? Will his family stand up for him? Will his brother and sister, as they become adults and pursue their own separate lives, hold fast to the sibling bonds of care and compassion that we are trying to strengthen now?  Will he be happy? Will he be at peace? Will he be safe?

Will he be ok?

Will he be ok?

Will he be ok?

In the autism community, parents scream about a lot of things. We fight for a lot of things. We have a lot of different approaches to help our kids manage/live with/mitigate their autism. We don’t agree. We rage against each other at times. But I’ve found one singular thing in common, one worry in every autism parent I’ve connected with or read about, whether their child has Aspergers, classic Autism, is high functioning, low functioning, severe, moderate, profound or whatever imperfect label:

Will my child have a good, safe, productive, respected life as an adult? Will they be able to live and thrive independently? And if not, will they have the support they need to live with dignity and respect on their terms? When I, as their parent and their biggest human advocate/cheerleader/protector/supporter/friend/sharer of love, am gone – what will happen to my child?

I read such a sad thing this week from a fellow Facebook autism mom friend, something that many autism mom friends have been sharing — that a friend of hers died of cancer, leaving behind a young, profoundly affected (from what I’ve read) autistic son. Melanie Hamilton Baldwin kicked cancer’s booty twice (she went by the non de plume, Booty Kicker, on “The Thinking Mom’s Revolution” website), but on the third recurrence succumbed. I think the saddest part was reading in the comments about how she may have been uneasy and not at peace at all as she was dying, out of worry for her son.

Wrote one commenter:

“If it’s not bad enough to suffer like that, but to have the A thing over her head during it all. Let’s not kid ourselves. No matter how much help or good intentions we receive, we know it’s only us that can do the job. She couldn’t even die in peace. Ok, maybe she did, and I pray she did with all the support from family and friends. But … I know I should be posting something different and more traditional, but this is what comes to mind. Sorry.”

There is so much we need to do for our special needs children: Secure their futures. Help them help themselves. Help them learn to self-advocate and learn independent living skills. Help them discover their passion and find their way. Make sure respect and dignity are part and parcel of their lives. Build a community of care. Find medical answers for all the complexities that come with an autism diagnosis. So. Much.

And please, please, please don’t get me wrong. None of this is to say our children are a burden. That’s the farthest thing from my mind. The ultimate goal, I would wager for any autism parent, is to guide their child to a thriving, independent adulthood as an engaged member of society (on the terms that work for them). To help foster a community that welcomes, works with and for individuals of different abilities.

But the fact remains that a part of the autistic population is more deeply impacted by the developmental/neurological disorder and will need significant support and care in their future. We pray for the best, but we must prepare for anything and everything. For our family, the truth remains that unless we see many things change, many miracles occur, we know our son will need support and constant care.

I want that care to come from me, under my supervision. But I will not live forever.

So then what?

Trust in God. God will provide. Yes.

But God has given me a body to fight and a brain to plan and prepare. But nothing is for certain, no how much we plan, prepare and put things into place for our children.

A friend of mine who has her own difficult health issues, recently worked to transition her teenage autistic son (nonverbal with complex medical issues) to a Christian group home, thinking that doing this now would mean he could settle in there under her supervisory visits. Thus she would avoid having to scramble to set up his care should her health worsen.

And yet after all her careful research and meetings with the directors to explain her son’s needs, likes and dislikes, behaviors and medical issues. When she finally settled him for his first overnight at the home, the administrators called her hours later, asking her and her husband to pick him up and bring him home. The complaint? He was not following rules. Since then, according to my friend, her son has spent a week traumatized by the experience.

Her retort? What can an individual with autism learn of rules in a brand new environment in a few hours? It takes time. Lots of time to facilitate a successful transition. She said to me:

“I am so afraid for the future of our children… at the carnival [she organizes an annual church-run carnival for families and individuals with special needs] there were many families that came with severally autistic pre-teens and teens. My heart broke to see the tremendous struggle just to get there child out of car an into an event. What are we going to do? … I spent 18 years paving a path for others, and there are times I say, “God — why would [He] make us suffer a struggle … so significantly … “
There are many success stories out there for sure – parents who have helped there grown autistic children find great living situations. Employers who hire individuals with special needs. Self-fulfilled adults with special needs living life on their own terms. Remarkable group homes that truly care for and love those who live there, no matter how profound the disability. And then there is a story of disappointment, of horror and of sorrow to match every happy one.

I’ve got no magic solutions to offer. No words of faith and comfort that can fully lift the fear off of me when these thoughts overwhelm me, when I lie close to Lil D, feel his breath on me, and wonder – will he be ok?

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