and Everybody’s Boy read us a story.
and Everybody’s Boy read us a story.
Sometimes when we see ourselves in our child it’s heart-warming.
Sometimes, however, it’s heart-wrenching.
EB seems to have inherited my anxiety. Which with his penchant for perfection (also me) shouldn’t be all that shocking.
It is though. He’s so self-assured and outgoing; not at all like I was as a child.
But the anxiety surrounds the very tenants of his Autism. Transition, change, emotional regulation.
I didn’t think he would worry about the upcoming change in school placement. He’s spending 90 percent of his time in that classroom as it is.
This past week, however, he’s been very weepy. Hysterical actually – with seemingly no discernible genesis.
It’s painful as a parent. There are some variables that even I cannot predict or manipulate in his favor. This is one of them.
When we ask him why he is upset he typically says something obscure like “I don’t understand the rotation of the Earth.” or “I need to know if there are machines made out of wood.”
I hear: ”I need to make sense out of something concrete because feelings are scary.”
At bedtime we have been turning off the TV at 9 p.m. and telling jokes and then talking about “something new” (basically his chance to ask about the rotation of the Earth or my chance to ask if Donkey Kong was in Mario Party 1).
Then there is a brief window for feeling talk. You have to play your cards just right and the stars have to align – but when they do – you can have some meaningful conversations.
Like this one:
Me: Winter break is a little bit different, isn’t it?
EB: The solstice is the shortest day of the year.
Me: Yes, the days are very short and that makes me sad sometimes. Does anything make you sad?
EB: Sid the Science Kid.
EB: It’s too sciencey.
Me: Are you sad about leaving Mrs. E’s class after the break?
EB: Mommy, do you remember when I saw Santa and I was scared?
Me: Yes, I do.
EB: But then I went to see him and took a picture. I was brave that day.
Me: You were very brave. Mommy and Daddy were so proud of you.
EB: I will try to be brave again, Mommy. I will try to be brave and not be sad in Mrs. S’s class.
Then he fell asleep. After all, that was pretty exhausting. To access those feelings, to comprehend them, and to explain them – well that’s just an Autism miracle.
I have no doubt he’ll be brave. I have no doubt he’ll succeed, regardless of what that success “looks like”.
I wish he didn’t have to be brave. I wish he didn’t have to fight so hard to hold it together and fit in, to be part of a world not created for him.
I wish most of all that I could take away the anxiety.
We can work on it. We can continue to build him up, to love him, and to embrace his uniquities. We can give him the supports that his little body craves.
We can be brave.
Just like this.
If you do something (or in this case don’t do something) consistently for 21 days they say it becomes a habit.
It’s been 21 days since I blogged.
My excuses are futile. I just put everything else before the blog. I’ll just hop right in with an update.
Almost three weeks ago I returned home from my office holiday party and opened the mail to find out that SSA was dropping EB for real this time (not like the every other month letter that says ”we are going to drop you, but then you find out three weeks and 20 klonopin later that they were “just kidding” and it’s going to be sort of okay). So I have to ready our “financials” back to January of 2009 for a meeting on January 5th at 9 a.m. so that they can not only take away EB’s SSA but also (most importantly) revoke his Medicaid and add to the growing thousands of dollars we have to repay because freaking Steven Hawking couldn’t figure out their stupid-assed algorithm for how they determine eligibility.
Why do we have/need Medicaid anyway? That’s like for poor people who are milking the system, right? Wrong. Gus and I have insurance – like the real kind – but that insurance is not legally bound to cover any therapy related to Autism in our state. That means EB’s private Speech, Occupational and Behavioral therapy are not covered by private insurance. They are only covered by Medicaid, which incidentally you can only get in one of three ways; 1) be poor (once a social worker suggested we have more children so that we could make more money and still qualify – for real), 2) be disabled and poor(ish) – this is what we’ve been for the past four years but you know how it is working part time in nonprofit while your husband is raking in the unemployment – we are SO ballin’ now we don’t qualify, 3) be disabled and get a coveted CAP slot. CAP is a program for individuals with developmental disabilities that assists them in living independently. It provides, among other things, personal care services (respite, in home support) and comes with a side of Medicaid. We’ve been on the cusp of receiving a slot for 3.5 years. Now the whole program in NC is being “restructured” which I honestly am not sure I understand enough to write intelligently about – but it looks like us getting our hands on that holy grail anytime in the near future (if ever) is unlikely.
Gosh, the options to get help for your child with a developmental disability are absolutely abundant. I’m so grateful that we don’t live somewhere crappy like Canada or France with socialized medicine.
That was sarcasm.
The school system is required to provide a fair and appropriate learning environment for children with disabilities. EB has received special education, inclusion facilitation, speech and OT at school through an IEP (individual education plan). Two days after I got the “no, really, we’re effin serious this time.” letter from SSA. We met for an IEP meeting to mainstream Peter from the self-contained (autism classroom) to the general education kindergarten classroom. Academically he’s rediculously above board so it makes sense that the stuff he needs to work on most must be worked on with typical peers – socialization, emotional regulation, transitions, etc.
The new placement begins in January and isn’t much of a departure of his current schedule – but it’s still a scary transition – leaving the safety of the specialized class and Autism-friendly zone.
He’ll still have heaps of support and we are very proud that he’s made such great progress. We know this is the right move for him.
Lots of changes though, right?
I realized a few things this past month. First, we are incredibly fortunate. Our son is doing amazingly well. He has had the best of the best for the past four years. The foundation he has had is more than we could ever ask for. If we lose it now, or realistically even if we lose part of it (because we will find a way to pay privately for therapy), he’s still had more than thousands of other children in his situation.
Maybe losing SSA and Medicaid isn’t the end of the world. Maybe the stress of the “you’re in/no wait you’re out” isn’t worth the benefit. The hours of phone calls and appointments and research and stress – maybe just being free from the cycle of emotional turmoil might benefit all of us in ways previously unimagined.
It will be okay. It is always okay.
I’m tired of living in a zone of uncertainty. I’m tired of having absolutely no control over our future, and most of the time of our present.
I’m counting on 2012 to be the year where the pendulum stops swinging so hard and fast and the dust just settles long enough for us to breathe – to get a good look at where (and who) we are – and live our lives without the fight.
Whatever happens, it will be okay. Whatever is there when the dust settles, we will find a way to reconcile it.
Cause sometimes the only way to win the war is to stop fighting so hard.
Nothing much is alive now.
It gets dark at 5 p.m.
There are no weekend activities.
Thanksgiving has passed.
Regardless of what the retail industry would have you believe – Christmas is still a little bit off.
We await the first winter snow with fervor. Looking for some assertion that it is indeed winter.
It’s the “in between”.
We spend a lot of time in the “in between” these days.
Not quite sure where we fit.
The child with Autism who is verbal, academically advanced, and craves social interaction.
The child, with Autism, who can’t keep up with his typical peers socially and emotionally.
The child – with Autism – who glaringly stands out as he introduces the children on the playground to his “brothers” Toad and Handy Smurf. As they whisper amongst themselves and snicker.
The child who can’t wait to tell his classmates at school that his Developmental Therapist is coming on Sundays, Mondays and Thursdays now!
The child who woke twice last night from nightmares.
Who begs me to “make it the weekend” every morning as I dress him for school.
Who’s IEP meeting in the next few weeks will celebrate that he has mastered all of his goals in the first quarter of Kindergarten.
The IEP meeting where I will worry that someday – he just might “look” too good for his own good – where he might lose the very supports that keep him in between.
For now – no one is arguing that there are more goals.
It’s just that there will always be more goals.
It’s a strange place to be.
Sure do wish it would snow.