Decisions, Decisions

Tuesday, July 5, 2011

I first started this post on January 11th, just a few days after Bear started the group speech program grudgingly granted him in an IEP from our school district.  Many of you know I pulled him from that program almost immediately.

I've held back posting the story for quite some time.  Partly because I needed to sort out what Bear needs. Partly because he went through a really rough patch (neurologically speaking) for several months and we were barely hanging on over here.  Partly because I got insanely sick from this pregnancy and switched into survival mode.  And partly because I wanted to re-evaluate what I wrote with a cooler head, because I cannot afford to say something I'd regret later.  This is the school district we have to deal with for years to come, and I am not going to burn bridges for Bear.

So, in a nutshell... here's what happened then, what's been happening since and where we're going from here.

What Happened Then
You may recall my lack of enthusiasm for the circumstances of the group speech program available from our school district.

After the first miserable session I gave it another chance at my husband's urging.  I made myself face the possibility I was overreacting, and that I may come to find it acceptable.  I mean, I fought to get him this service, what on earth was I doing talking about pulling him after a single session?

Bear was off-kilter that Thursday morning, plus had one of his severe shivering fits.  He shakes so hard someone unfamiliar with the situation could think he was having a seizure.  I was loathe to turn him over to the therapists who had clearly not bothered to read his file and seemed surprised at my insistence on explaining his needs to them.  Before they took the group out to the trailer, I managed to grab a therapist and tell her his brain has trouble regulating his body temperature, and to wrap him up in his coat if he started shivering.

This woman looked at me and said "oh, is that what that was the other day?"

Translation: My neurologically challenged 3 year old had a violent shaking fit on the floor in the middle of a group speech therapy session.  In front of two pediatric therapists (one speech, one OT).

And nobody did anything about it. AND NOBODY EFFING TOLD ME IT HAPPENED.

Needless to say, my inner debate regarding whether or not to keep him in this program was over.

The only thing that kept me from snatching him up and running the other way was that, moments before, I'd met another parent with whom it was clear I needed a little time to chat.

I let him go with the group and then talked to the mom I'd just met.  She happened to know how to locate the private OT I'd been trying to track down.  The one who originally evaluated and diagnosed Bear through EI.

How I Ended It
I'm a pretty zen girl. It takes an awful lot to set me off, and I will always always always look for a genial solution. I will likely never be the one in a crowd questioning authority or bucking the system.  And I will never, ever be the one saying anything confrontational.

But the situation with the school has awakened an angry beast inside me... one that wanted to tell them to take their IEP and do rude things with it.

But again, with the burning bridges.

Fortunately(?), around this time Bear had also been having what appeared to be auditory hallucinations.  ("Mommy, the voices are talking.  Mommy, where are the people hiding? I hear them talking.  Where are the voices, Mommy? Help me find them.")

A call to his neurologist got a more serious reaction than I anticipated.  He requested we get a full evaluation from a pediatric neuropsychiatrist at Children's Memorial.  (Took 4 months on a waiting list, but of course we did it.)

In addition to this new concern, we had the collective opinions - in writing, which had been provided to the school prior to his IEP meeting - of his neurologist, his OT and his group OT.  All of which said he needs to continue OT.

(For the record, after meeting him for all of 2 hours one of the school evaluators responded with a relatively snotty "This child does not need OT twice a week."  To which I responded "Honey, you do not know him.")

So. With genuine new concerns and overwhelming professional opinions that he should be in OT, I informed the school that I was sorry, but his neurologist felt OT was his primary need and it just so happened the only Occupational Therapy slot I could secure for him conflicted with the speech program.  (True enough I didn't feel guilty saying it, nor do I feel guilty repeating it here.)

They were surprisingly helpful.  Even gave me the option of either rescinding his IEP (paperwork galore, plus would have to start from scratch when he needed it updated) or simply suspending it for medical reasons. Obviously, we went with a simple suspension.  Which is where it remains, until I figure out where to go next.

Where It's Been For the Past 6 Months
I can't believe how lucky we got.  We managed to get Bear back into with the group OT we'd used through EI and our insurance works there.

We also managed to secure a coveted spot with the great private OT who originally diagnosed him.  I simply adore her (as does every parent I've met who knows her) and Bear has made tremendous progress with her.

I even learned that she made calls on his behalf right after she met him (in Oct 2009) to make sure he got assigned the perfect OT through EI.  I feel like she truly gets him probably better than any other clinician.  I don't think he'd have come this far without her. 

Our beloved OT also wholeheartedly agreed with the pediatric neuropsychiatrist's advice that we find a family therapist experienced with sensory & spectrum kids to help us navigate the challenges of raising Bear.  She said he's one of the most complex cases she's seen in years and she was quite concerned about us finding the right counselor.  Once again, she worked the phones for us and came up with two qualified options.  We met with one for the first time last week, and I felt right away she's a great match for us. I'm dreading the addition of another weekly appointment to our already packed calendar, but we all know it's the right thing to do.

Our Next Transition
Because the school did not qualify Bear for the ECE program (what they call the special needs preschool here), I would have to request a full re-evaluation and hope for a miracle (they kind of told me on the side that their hands are tied without an Autism diagnosis, which we don't have).

Frankly, right now I just don't have the fight in me for another uphill battle.  Plus, I'm incredibly  reluctant to sign him up for a 5 day a week preschool program at 3 years old.  I talked to a dozen area preschools, and the average 3 year old program is 2 mornings a week for maybe 3 hours.  5 days a week feels excessive.

Part of me just doesn't want to give up my baby any sooner than I have to... it's supposed to be a few more years before I have to deal with getting him to school 5 days a week.

Part of me resents never getting to just BE with my kid.  I left a lucrative job at a Fortune 500 company to run a small home business pretty much because I wanted to be at home when my kids were small.  Between OT and group OT and daycare and his ENT re-checks and neurology re-checks and now weekly behavior therapy I can't help wonder when, exactly, do we get to have some fun?

So. I just scheduled group OT to stop at the end of July.  That gives us just enough time to do some long weekends to visit distant family before preschool starts.  Private OT will continue right up until school starts.  Behavior therapy counseling just started, and will continue for 3 months until the therapist goes on maternity leave.  I love that there's a built-in break just when I'll need some time to prepare for having my own new baby.  I suspect we'll be back with her after I recover from the birth, because gawd knows it will probably create a whole new set of behavior challenges we'll need help with!

Where We Go From Here
Bear is registered for regular preschool.  BUT.  And this is a huge but... it's in the same facility that has the daycare he's been going to since he was 15 months old.  They know him. They know me.  They know it may not work and we are all fine with that.

The director (a dedicated professional I respect very much) is even making an exception to the potty training rule for us and allowing me to bring him in pull-ups.

His current teacher (he's in a "daycare" / semi-preschool program that's for kids too old for the 1-3 daycare but who missed the age cutoff for current preschool year) asked me not too long ago if I'd looked into getting him a classroom aid.  So, yeah.  His challenges are potentially too much for a traditional preschool setting.

Moving ahead with a traditional preschool program was an incredibly difficult decision for me.  But I decided to give it a go for a few reasons:

- It's 2 days a week, which feels reasonable for a 3 year old program.
- I can still work in doctor appointments and therapy sessions around a 2 day school week.
- It's in a familiar setting, which will be much easier for him to handle.
- If he crashes & burns, it will provide much-needed documentation to present to the school if/when I request a re-evaluation with the goal of acceptance into special needs preschool.

So. That's that.  I feel I blinked in January and just woke up like some coma patient confused about what year it is.  This has probably been the hardest 6 months of my life.  I've never had uncertainty about decisions haunt me like this.  All I can say is we've done our best for him this year and so far the decisions we made seem to have been the right ones.

I can only hope the choices we've made that will take us through the next 6 months work out as well.