Social Egg Shells

I love my son.

But I sure do love evenings without him.

I love that he has people in his life that want to spend time with him and will host him for a sleepover.

I love giving Olive a reprieve.

And Nick.

And me.

The ease of social events with just Olive still kinda blows my mind. Oh this is what its like for other parents. You get to hang with the adults as the kids just play. No checking constantly. No worry about acceptance or inclusion. No fear of inappropriate behavior.

Last night, Elias spent the night with Ms. Julia and we took an after-dinner walk with Olive, when normally we'd be starting the bedtime routine. We happened upon a neighborhood gathering where we knew some folks, Olive spotted a friend from preschool, took off running, and we barely saw her again unless she needed something.

"Mom is it ok if I go play in the backyard?"

"Mom can I have a marshmallow?"

"I need to go potty."

How appropriate. How easy. How strange.

With Elias I am always ready for the melt-down. For him to squeeze a smaller kid's arm till it bleeds. For him to lose his balance and knock over someone's wine. For kids that don't know him to stare or snicker or move away and leave him talking to himself.

I am always treading lightly on social eggshells waiting for the inevitable cracks. And they dont always appear, sometimes social events with Elias feel fairly smooth,  but the anticipation of mayhem never ceases.

Last night we met new neighbors, drank wine and beer around a fire-pit, as the kids drew with sidewalk chalk and played tag.

"Where's Elias?" a friend asked.

"With his respite provider for the night. Or else we wouldn't be here." I answered.

And it's true. We'd be asking him (for the tenth time) to put on his pajamas, convincing him to give up the day and welcome sleep. We'd be waiting for that moment when both kids doors finally close for the night so we can put our feet up. Or start a project. Uninterrupted childless time. Yes.

But this. Socializing as one child plays, knowing our son is safe and loved, but not in sight. This is a gift every parent of a child with special needs deserves. This is the help we need.

We almost lost our respite services this year as the state wasn't sure if Elias still qualified as medically challenged. This despite the fact that his diagnoses have not and will not change, and he has qualified for services since he was born four months premature. But I guess we don't take him to the doctor enough.  Or therapy. Our file looked too bare as we have grown to trust in ourselves and adjust to cerebral palsy, autism, and visual impairment without constant poking and prodding. Without all the waiting rooms and ambiguous tests. Just us living our lives.

But we still need help.

And since we will have to go through this whole process again next year, and prove yet again that his disabilities affect his quality of life, we have started the paperwork for a different classification for services, "developmentally delayed" instead of "complex medical challenges". And of course there is a long wait. Years even. And our first application came back with a low score as far as priority of needs. He has parents. We aren't in jail. It could be worse...

So our Care Coordinator met with me this week and asked me to describe in detail Elias's behavior, his aggression and melt-downs, and how it affects our ability to go out in public, as an attempt to improve our score in the hierarchy of needs.

"I am always weighing if its worth it. Do I try to run an errand? What if he has a tantrum? Can I carry him and keep Olive with me? Should we just stay home?"

"Wow," he said a lot as I described my normal.

"Just today, when I went to the bathroom before going out, I heard Olive scream because Elias had pushed her head into the door as she tried to open it."

"Wow."

This is my everyday. Not being able to leave them alone for five minutes. And yet there are times when they are fine for hours. Playing like siblings do. But you never know when the switch will flip.

You just never know. And that is where the stress lies.

"Do you ever get depressed?" he asked. "Have you ever needed to take medication or go to therapy?"

I paused before answering,"If I didn't have Nick, I'd be a mess. But we are really good to each other and good to ourselves. We talk about it all, maybe we have an extra drink at night, maybe that's my medication...but we also run, we play hockey, we take turns getting out."

And I write.

It keeps me sane.

So no, I am not depressed. I love this unexpected life of mine, with all its complexity and challenges.

And I love the moments inbetween.

Comments

[Shelley]

My sister qulaifies for respite care for her son as well and every year they go through the same thing. It boggles my mind how people who do not know these children or their behaviors think they can determine their needs effectively. No one knows the needs more than the parents that provide the care. Why is that so hard for the bureaucrats to understand? Hope Elias and you guys get what you all need.

[Christy]

Thanks for getting it Shelley, it is so frustrating.

It seems Olive needs the respite too. Last night she told me that she wished her friends lived with us but not Elias. Elias could live with Grandma and Pop, she said, and we could visit him. It broke my heart a bit, but I guess I understand where she is coming from.

[Lee]

We live in Illinois and last year were told that the waiting list for respite was 1year. But budget cuts here have now added another year to that wait. For now, me and my other 2 kids enjoy the private time we have when my son goes to ESY (summer school). It's only 3 hours in the morning for a few weeks in the summer, but it still is a few hours of quiet time together (w/o meltdowns, continuous questions, etc). Sorry for being a bit political, but it would be nice if help for special needs kids would stop being referred to as entitlements and just be thought of as help. Sometimes it does 'take a village' to raise a kid.

[linda]

Christy, there's a fairly new book that you and/or your readers might be interested in:
The Reason I Jump. It's a small book, written in question/answer format by a Japanese boy about his own autism. It explains the how and why of certain behaviors from his personal viewpoint. It opens a window into an autistic youngster's world. Very powerful!