Negotiating With Myself

It's official, then.  A real life autism specialist said that Bear qualifies for the all access secret pass code to Early Childhood Land.

Which means.... I should probably do something about that. Seeing as how I've been kvetching for almost a year that our school district said at his initial IEP meeting that they couldn't grant him the services he really needed without that diagnosis.

But.  Here's the thing.  In the meantime I interviewed a bazillion preschools, since it didn't look like I could get him into the special needs preschool.  And he started preschool this week.  And like every single other 3 year old preschool program I talked to, it's two mornings a week.

And the ECE program?  Five days a week. Which seems excessive for a 3 year old.

But I appear to be the only one who has a problem with this. And my main problem appears to be that, after nearly 2 years of being on the constantly overscheduled therapy appointment treadmill, I was really really really looking forward to a "normal" 3 year old's schedule of preschool 2 mornings a week.

Two mornings a week, I might add, that did not require me to be present.  (Can I get a hallelujah?!)

The other thing, of course, is the sheer terror I feel at the idea of trying to get Bear anywhere at any set time every single morning.  Because dealing with first morning Bear is just like opening the Christmas gift from your Grandma who really likes to craft.  You never know what it's gonna be, and you have to adjust your reactions on the fly.

Some mornings, it's gorgeous handmade quilt in my favorite colors I will cherish forever Bear.
And some mornings, it's puff paint on cheap turtleneck, put it on so I can take your picture Bear.

(No, I am not making those up.  And I have the photos to prove it.)

Currently, we have to leave for preschool by 8:30 or be late.  I've been allowing 90 minutes to get him ready, and we were still late the first day because he couldn't decide where he could sit that would make it acceptable to put his shoes on.

And at that point I'd already bribed him with a chocolate donut to get his pants on.  Forget about brushing hair. Or teeth.  When he wakes up that disregulated, I'm happy if we achieve "not naked."

And, of course, there's the whole "but this was going to finally be our normal time together" argument.
I made a deal with myself that we'd take this semester for ourselves and see about securing a spring semester ECE spot.  I can deal with that.  He'll have turned 4 by then.  And that will still give him a year and a half of special needs preschool to prep him for Kindergarten.

But everyone's telling me, in one form or another, to suck it up.  So there's that.  Plus, there are two more complicating factors I was recently forced to consider:

1) His new baby brother is due within days of when he would start spring semester in the new school with the new, every day schedule.  I can't possibly ask him to adjust to both things at once.

2) The school called a few days ago to follow up on his suspended IEP. I mentioned I was going to call soon because of the recent autism diagnosis, and they fell all over themselves to be helpful.  At which point I found out if they grant the service they won't hold a spot for spring, he'd have to start right away.  (I told them the truth - I'm still waiting for all the medical reports before calling the IEP meeting.  She gave me until October 1st to get back with them.)

So. I made a list of pros and cons to starting ECE as soon as possible to help me figure out what to do.


Pros for Bear
1) It would give him plenty of time to adjust to the new school and schedule before he has to adjust to his new sibling.

2) It's exactly what all of his doctors and therapists think he needs.

3) I heard from another mom with a son in the program that the daily routine of ECE helped create improvements across the board, especially at home.

Pros for Me
1) I could rediscover what it's like to do client work in actual daylight.

2) I could rediscover what color my floors are under all those dust bunnies and dog prints.

3) I could rediscover what the inside of my gym looks like.

4) I could rediscover my muscles under all this fat.

5) I could rediscover how to use my stove.

6) I could actually get some writing done.

7) I could be less stressed, less pressed for time and more there for Bear the rest of the day.

8) I could schedule something like a pap smear without hours of frantic phone calls trying to get a sitter.

9) It's free.  And the tuition we're paying private preschool sure could be used elsewhere, like the giant pile of medical bills we're about to get now that we started new medical insurance and are in the deductible phase.

Cons
1) I don't wanna.

2) Because it's hard.

3) No. Seriously. It's hard.

4) You want me to put my 3 year old on a bus? By HIMSELF?!

5) Booking doctor and therapy appointments will become a choice between missing school or taking him as an overstimulated, disregulated meltdowny mess after school.  (I know, I know. Y'all already do it.  But again - only 3! I was supposed to have more time!)

I met another mom in OT in the same district with a son the same age - she turned down the ECE placement they offered her because she wasn't comfortable with 5 days a week, and they wouldn't budge to let her do 4 days a week so he could stay in his OT group.  So, I'm not the only one with these misgivings.  Every day just seems like a helluva lot to ask of a group of kids who are probably already booked out the wazoo with therapies.

Obviously, I'm gonna do it.  I just need time to process, mentally and emotionally.  Which, luckily, I appear to be getting in the form of the pathetically slow trickle of the medical reports I need to proceed (so far, I've got 1 of 5).

So, I have until October 1st to call the IEP meeting. That probably puts him in ECE right around his 4th birthday.  I guess I can live with that.

OK Go Rocks Out with The Muppets

LOVE. THIS.

Props to my girl ChemLabGoddess (fellow special needs mom and generally amazing human being) and the always awesome Joe. My. God. blog for tipping me off to this Muppetastic treat.

He Couldn't Wait for It

From the  moment the box arrived from Peace Weighted Blankets, Bear was totally on board with the awesome new addition to his sensory input toolbox nungle binkie collection.

I don't know how we ever got him to bed without it.  He calms down and falls asleep so much faster with just a few minutes of heavy blanket time.

Input Much?

One nice thing is that we can often gauge Bear's neuro status at bedtime based on the sheer number of items he insists on bringing for snuggles.

"All my ammals"

All Wrapped Up

This moment marked the first time he ever verbalized a request for calming sensory input.  He handed me the blanket (AKA "my boo nungle binkie") and said "Mommy, wrap it in a circle."

Needless to say, I was happy to do so.  And so proud of him for taking a step towards self-regulation.

Decisions, Decisions

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.

Can't Help But Smile

This viral video is a continuous shot of the streets of Grand Rapids Michigan, filled with a variety of residents who take turns lip syching to a great live recording of Don McLean's immortal classic American Pie.

Even if you don't happen to know every. single. word. of this spectacular song by heart...

Even if you don't happen to be an Illinois alum from the pre-1994 era who reflexively inserts "at O'Malley's!" at the end of every chorus...

Even if you don't happen to be a Marching Illini Fossil who's stood in the middle of a bar clutching your squad mates while screaming 'the marching band refused to yield' bit into cheap beers...

Even if singing and dancing the aforementioned O'Malley's version with your fellow alumns wasn't the high point of your wedding reception...

This video full of ordinary folks having a good time can't help but make you smile.  (Thanks to geekmom.com for turning me onto it.)