Wednesday, March 8, 2017

The Big Day

Today was a big day.

Today Sky graduated from his IEP.* The path to diagnosis and then from getting the diagnosis to obtaining help at school was long and arduous, so I admit that part of me hesitated when Sky's case worker suggested we schedule an exit meeting. Six years ago, when I had to fight tenaciously for months just to get support for him at school, I never imagined a time would come when he would no longer need that support.

I mean...
I still remember being told he couldn't participate in the school field trips unless I could take off work to go with him since his teachers didn't feel like they could handle him. 
I remember the little boy who repeatedly got in trouble for taking things literally and misunderstanding every single shade of gray. 
I remember the preschooler who missed the bulk of the teacher's instructions because he didn't know she was talking to him or couldn't process what she was saying. 
I remember the notes from Sky's first formal school evaluation that elucidated in excruciating (yet somehow humorous) detail how he mimicked the sounds of various explosions throughout instruction time, clearly disturbing the children  around him even as he kept on task. 
I remember how that same evaluation described the way that he jumped up during class and ran around his chair three times before sitting back down again. 
I remember the kindergartner who climbed over backs and stepped on fingers during circle time in order to pick up something the teacher dropped so he could return it to her, not realizing he'd hurt three of his classmates in his effort to help. 
I remember the boy who never made it through PE or recess without bumping into other kids or knocking someone over.  
I remember when he perseverated** to the point of making his classmate cry, 
I remember the kid who couldn't go to the bathroom without disrupting the entire hallway as he listened to his voice reverberate off the tile floors and the metal stalls. 
I remember creating social stories about how to walk through the classroom to turn in a paper without wreaking seven kinds of havoc as he made his way from his desk to the teacher's. 
I remember worrying, I mean really worrying, that Sky's autism would forever prevent him from demonstrating the brilliance we knew was in there but that was so often hidden by all the other stuff. 
I remember the hundreds (maybe even thousands) of times other kids accusingly announced to me this, that, or the other wrong that Sky had done. 
I remember how terribly hard it was to send Sky to school each day knowing full well he wasn't equipped to handle all the world would throw at him.
Sky's artwork, hanging in the hallway at school
 I remember that kid very, very well. But, that's not who Sky is now.
The Sky who exited his IEP today is the king of clever jokes and spot on physical humor. 
He's a self-advocate who appropriately seeks guidance when he doesn't understand instruction or when he fears he didn't quite get what he should be doing. 
He's an artist respected by his peers for his immense creativity. 
He's an amazing story teller. 
He's an avid reader.
He works comfortably in large and small groups. 
He's an all-A student in honors classes. 
He's a kid would can control his sound effects and take turns in class discussion without perseverating on particular points or concerns. 
He's a budding pianist. 
He's a good friend who has a small group of close pals but who seems to be known and well-liked by many.
In short, Sky is a kid who no longer needs an IEP. So, for Sky, today was no big deal. Aside from the fact that his mom and dad brought him to school early so they could meet with some of his teachers, his principal, and the other folks on his IEP team, this day was pretty much like every other day. Sky did what he always does--he went to classes and hung with friends; he worked hard and lived large.

Another piece hanging in a display case at school.
Today might not have been a big day for Sky, but it was a huge one for me. Because, today I had to learn how to willingly let go of something for which I'd fought so hard. I had to tell myself that these are the fruits of Sky's hard work, and that we should cherish them. I had to remind myself that, though Sky still struggles, he is doing fabulously, and he will be fine. I had to acknowledge that this is a journey to destinations unknown and that that's ok.

I had to trust the process.

None of this comes easily for me, but I am learning, and I will be forever grateful for the all of the therapists and teachers and friends who have helped me figure things out along the way. Today is a big day. It's a good day. But, I suspect it is only one of many great days to come.



______________________________________________




* IEP stands for Individualized Education Plan. It is "a written document that's developed for each public school child who is eligible for special education. The IEP is created through a team effort and reviewed at least once a year. Before an IEP can be written, your child must be eligible for special education. By federal law, a multidisciplinary team must determine that (1) she's a child with a disability, and (2) she requires special education and related services to benefit from general education program." (Definition taken from: http://www.greatschools.org/gk/articles/what-is-an-iep/)

** Perseverate: to repeat something insistently or redundantly; the continuation of something (such as a word or an idea) usually to an exceptional degree or beyond a desired point (definitions taken from dictionary.com and Merriam-Webster).

Sunday, February 19, 2017

On Starting the Journey All Over Again

Stow got an autism spectrum diagnosis.

Part of me feels compelled to type that line over and over and over again because it feels big enough to engulf everything. I mean, how do you go on from learning you have a second child on the spectrum despite all the work you (and he) have been doing?

The other part of me feels a strange sense of relief. Ren and I have suspected autism for awhile, even though Stow is much different than Sky was at this age, and even though he has responded well to various interventions we've tried. Since Stow was a baby, he has done or is doing developmental therapy, occupational therapy, physical therapy, speech therapy, hippotherapy, chiropractic therapy, social group, and behavioral therapy. He's also been on some form or another of a restricted diet to reduce the various side effects some foods seem to cause. Most of these things have helped, and many of his therapists and teachers tell us that he doesn't seem like other kids they've known who were on the autism spectrum.

But, nothing has ever come easy for Stow. He's been delayed on pretty much every milestone and has had to work hard to reach a lot of them. He struggles with hypersensitivity to some things and hyposensitivity to others. He has a hard time reading social situations and can often overreact or ignore. Classmates and friends are leery of him because he doesn't respond in predictable ways. He has daily meltdowns. And when he's nervous or happy or sad or scared, he struggles to process what people say to him and put his thoughts into words, and the breakdown in his language can seem pretty catastrophic to him (and therefore to the rest of us).

He gets everything eventually!
Up until the diagnosis, one of my biggest worries (honestly) was that all of the knowledge we'd gained from parenting Sky and all the resultant interventions we'd pursued with Stow would actually keep him from getting a needed diagnosis. I know that sounds strange. What I mean is that even though Stow ultimately does okay, he still struggles a lot; he goes from being fine to needing a ton of support to being fine and then needing a ton of support again. Our job as his parents is to make sure he's getting what he needs when he needs it. Having an appropriate diagnosis can help with that.

Despite all we've done and despite all the ways Stow has managed to scrap his way to generally being on track developmentally, Ren and I both still felt like we didn't quite have Stow figured out. That's why we followed through with the appointment with the specialist ten days ago. I'm not sure what I was expecting when we went, but I guess I was hoping for a little bit of magic, that maybe the appointment would uncover some kind of heretofore unseen disorder that could be easily treated with some new (to us) and exciting therapy. A girl can hope, right?

The autism diagnosis tells us our instincts are in tact, and I guess there's something comforting in that. But, we are a bit overwhelmed as we now realize how much work we still have to do. Just like with Sky's diagnosis, this one didn't come with a roadmap, so the way forward isn't entirely clear. There is a lot we have to figure out on our own. Just thinking about it can be exhausting. Since we've done it before, I know Ren and I are up for the challenges of this journey. I was just really hoping we wouldn't have to take it!