Tuesday, March 26, 2013

Spring (I need a) Break

My workload has been crazy lately. Managing my schedule, between work, quality time with my family, and basic household chores is difficult enough as it is. Life decided to throw in "Dead Mini Van", "Buy a new car", and "Begin the IEP preschool transition process for my little guy" on top of the rest of the heap.

I got the news a couple of weeks ago that my Minivan would rest in peace after "throwing a rod". Apparently this is akin to dying a quick death. Engine dead. Too costly to bother repairing. It's just as well. I had been driving around terrified of the impending doom for quite some time, and frankly it was wearing on me. I was on my way with the boys to meet a new friend from the Down syndrome community for a playdate at her house, when just as I was cresting a large grade on a freeway, my van just...turned off. I began praying loudly as there was no place to pull off the freeway. Please God just let us get to the exit. Please God, Please God... We did get to the next exit- thankfully unharmed- and sat there waiting for what to do next as my heart beat began to slow back down to a normal pace. We got my car towed off to a nearby parking spot (it was a weekend- after mechanic hours. Of course.) and went for our playdate anyway.

The process of buying a new car and disposing of my old one was long and drawn out and a lot of money was spent on a crappy rental car- that thankfully was cheap and crappy, so that when I closed my finger into the door of it, didn't break my finger. See? The silver lining. But finally...FINALLY, I have a new (to me) car, that is problem-free, fuel efficient, and kinda cute. I sadly said goodbye to my roomy minivan with my ability to fit just about anything into the back of it, in exchange for a car I can rely on. I happily took that trade off.


And the license plate? I'm embracing it. It's even pretty true.

This week was rough. We have been gearing up for Elijah's transition to preschool, and finally had our IEP assessment. This assessment brings together a team of people- a psychologist, a Physical Therapist, an Occupational Therapist, an Adaptive PE teacher, and a Speech Therapist- to assess what your child is doing and what the best placement & goals for them would be within the public school system. Our assessment was on Tuesday, and I calmly packed up Elijah, some snacks, our discharge report from the current program he's attending and got to my desired location 5 minutes early. Strangely enough, we were told to wait in the waiting room...and waited and waited. I began to get very nervous. if we were meeting just one person I could see the delay, but wasn't there a whole team of people waiting for us? Eventually, our Regional Center Coordinator came down. To inform me we were at the wrong place. Only I had no idea where to go!! I panicked. Began calling every phone number I had access to in relation to this appointment and only got voice mail. Our Regional Center Coordinator suggested I just go over to the last location I had an appointment with the school system at. I began driving and calling. And the tears started.

I was driving aimlessly around town, making calls, when I finally pulled over and double checked my email.  There it was- clear as day, even though I had not seen it- a specific address and location directions for the meeting. I was bawling by now.  I turned onto the street near the school we were due at, and a woman began to cross the street in front of my car. I couldn't believe my eyes- it was Elijah's old Physical therapist!!! I shouted Hi and she came over, all smiles to the car. So, I began bawling again. I was so overwhelmed and to see a friendly face, just put me over the edge. She calmed me down, assured me that it was FINE- they were running late anyway, and to take a deep breath.

The assessment itself went alright. Elijah mostly did what he does- so I felt like they got a pretty accurate sense of his abilities.  Which is good. The part that was not as good for me, are the inaccurate statements that still circulate about what a child with Down syndrome can and can't do. I heard at least 3 times this exact sentence: "Well, since he has Down syndrome, he'll OBVIOUSLY be in a Special Education class." I said nothing. The reality for us is that I actually do think that RIGHT NOW, a special education class is what will be best for Elijah. His gross motor skills in particular are so far delayed that he really needs help. So, while I do think a special education class will best best for Elijah this year, it is NOT true to say that all children with Down syndrome should be in a special education class. There are many kids with Down syndrome that would do better in a typically developing preschool class. It's frustrating to hear over and over again- even before they meet my son- that the understanding about Down syndrome (even by those that would call themselves professionals) is so inaccurate. It's frustrating to feel like your child will be underestimated because of outdated concepts.

Although I had frustrations about the understanding and language, everyone was very nice and Elijah was his typical charming self. The kid knows how to win people over, that is for sure.

I couldn't have been happier to leave this week in the dust. School is out for Christian for the next two weeks, my work schedule is slightly lightened, as my ballet teaching job is on Spring Break for a week, and I'll have a little more time to fit in some quality activities with my kids. Yesterday, we attended the DSALA's (Down syndrome Association of Los Angeles) Egg Hunt. We packed up the kids, some snacks, and the camera and headed to the park to meet up with everyone. The Easter Bunny was there, and I couldn't wait to see Elijah's reaction...



DSALA Egg Hunt

The series of photos feels a bit like my week was:


I don't like you!

Alright...I'm cool!

Looking forward to a more Alright...I'm cool! week ahead...


P said...

Ride the coaster & feel the perspectives changing. Don't forget preschool with an aide (available / helping all--not hovering) for safety and for physical help.

Full inclusion given a good ole solid college try WITH ASL in class (aide?) THEN switch if needed. What he WON'T get in sweet well-intentioned spec needs rooms are SPEECH & SOCIAL behavior modeling THAT HE NEEDS to SEE more critically then the ease with which they can accomodate HIM into a spec day class.

No, fit the school to him (aide in room, smaller chair, sit on a block at circle if he can) not how easy it is to pop into the experts. The SDC experts can work with the gen Ed inclusion teacher.

It's NOT an option in our area unless you go private. Sounds to me like it IS for you. They WiLL & MUST keep him safe, they SHOULD readily modify work & tasks to suite & stretch his abilities.

Be firm & BRAVE enough to try it. You can always switch and no harm done if you disagree but if it works, imagine the possibilities. No struggle to get OUT of SDC (comment to a friend this week--not DS but it was: he is doing so WELL in SDC Kinder; academically FINE and no behavior issues at school. He should STAY in SDC cause its working ?!!!!????? Uhm NOT in parents playbook! Reasons to stay are why he's ready for gen Ed! ��

P said...

But gen Ed vs spec day real battle is Kinder or second time kinder. No first grade spec day unless you want it for a while most likely.

Good luck and hang on the ride gets wilder & better & more frustrating too

P said...

Ask families and/teachers/admin at Christian's school about preschool option locations & teachers!

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