Tuesday, April 7, 2015

School Boy

August 2012

“Early intervention makes such a increased difference in medically complex and delayed kids.”

“You will need to make sure you have early invention for JD from birth.”

“Kids who have early intervention do much better in school.”

After discovering JD’s diagnosis friends whom have kids with special needs, or friends who are therapists/specialists, continued to talk about the importance of early intervention. Sure, I had heard people throw around how beneficial early intervention was for kiddos.  I assumed as parents, Nate and I would intervene early as well. Duh, why wouldn’t we start working with him as soon as we could?

Turns out as I walked around touting how we, of course, would “do” early intervention I knew nothing about what I was saying.  As I discussed early intervention others discussed Early Intervention . . . notice the difference? Lowercase ‘e’ and lowercase ‘i’ versus capital ‘E’ and capital ‘I.’ Oops.

As JD was being discharged from the hospital they go over a lot of paperwork and one piece discussed the next steps for Early Intervention (capital ‘E’ and capital ‘I’). “Oh so, that’s like an actual thing?”

E(e)arly I(i)ntervention to me meant as parents we needed to intervene early in JD’s development to ensure we could provide him the tools to grow and progress both mentally and physically. However, Early Intervention is actually part of a state run program to ensure children from birth to three with diagnosed disabilities or developmental delays receive support to maximize development. Basically, they offer services such as a variety of therapies for kids who need extra help. Who knew?!?!

A week of being home brought letters, phone calls, and lots of information that I did not want to read. So in August of 2012 I cleaned the condo, bought fresh flowers, and actually did my hair for our first meeting with our Early Intervention (or EI as the in-crowd calls it) coordinator Holly. To spare you the details here’s the gist:

Step 1: Meet with you assigned coordinator to assess if your child qualifies for EI.
With JD’s diagnosis he automatically qualifies then you add his cleft palette, clubfoot, ASD (hole in his heart), lack of oral eating, it goes on and on and on . . . and JD becomes the top candidate for EI.

Looking back I never realized how I would go back to this moment many times as it was the first time outside of the hospital I would be asked to detail all of JD’s long history for his short 4 months of life.

Step 2: Meet with EI coordinator and four different therapists (each specializing in their own field) to evaluate which therapies JD should receive.
This is a very strange step as 5 strangers walk into your home to tell you what your child can and cannot do. Some parents take this step very hard but for me it was more confusing. We had been home for less than a month still adjusting to life with two kids and these five strangers were talking about the next 3 years of our lives. They spoke as though I should understand what they were saying and they spoke to each other like it was all business.  Shame on me as I sat their smiling and nodding along with the 5 strangers when my head was scrolling with questions.

Coordinator: “PT once a week, OT once a week, no need for Developmental just yet and let’s just start Speech at 2x a month. Do you have any more goals? Anything else you think we should add? What do you think mom?”
What I actually said: “No, sounds great.”
What I was thinking and should have said: “Huh?”

Thus began our journey with EI.

Step 3: Receive phone calls from 3 new strangers trying to set up time to meet each week for the next three years.
Confession . . . I took longer than normal to get back to the new therapists. Everything happens all at once and your life as a weekly Therapy Mom starts very quickly.  Consequently, I stalled. While I understood there was no way around being a Therapy Mom I was not yet ready to open the floodgates.

I’m not sure when I finally worked my way up to our first therapy appointment but it was not as hard as I thought. EI therapy is similar to running a long distance, the first time you are nervous, not sure of your abilities, not sure how far you will make, wondering if you need to stop . . .I had no doubt JD would perform like a rockstar but what about me? After the first therapy session it just got easier. I will spare you the details of 3 years of hour-long therapies anywhere from 1 to 5 times a week. The EI therapist slowly became more than just a routine; they became part of the family. 

Sitting practice at 2.5 years

Last Speech Therapy session with the fabulous Katherine - almost 3 years old

Last Occupational Therapy session with the amazing Kara

JD coloring for the first time and loving it


March 2015

As JD is just two weeks away from aging out of the EI program I am holding on with white knuckles to that title of Therapy Mom. After 11 different therapist, 500+ hours of therapy, 15 different pieces of equipment, 50+ developmental toys, 15 group meetings, 10 different evaluations, 100s of medical terms and daily practice  . . . I am a PROUD Therapy Mom.

Just when I get the hang of it, just when I love the routine, just when I think we have the absolute BEST team in place for JD everything stops. As of April 2, 2015 I will no longer be a Therapy Mom as I transition into School Mom.

Yep, the Early Intervention program starts at birth through their 3rd birthday. On April 1st JD will be in EI on April 2 he will officially age out of in-home therapy and he will start to attend school. My baby who has never been with anyone besides family (and Therapists) will attend a full day preschool program Monday – Friday.

Back in November, Nate and I met with the EI social worker to begin the transition process from EI to school. Turns out our school district absolutely ROCKS at this Special Ed thing. As this lovely woman sat at our table explaining the potential programs for JD, Nate and I did everything we could not to shed a tear. Slowly this very large weight lifted off my shoulders as I heard her say “you guys are in the best school district for JD.” Interesting, I did not realize how heavy this boulder was on my shoulders until it was gone.

As with everything we do for JD there are a few steps.

Step 1: Referral from EI to the school district

Step 2: Evaluation of JD’s abilities
The evaluation phase is based on which services JD is currently receiving through EI. Some kids might have one or two specialists in the evaluation but JD never likes to be outdone so we walked into a room of eight different specialists with more filtering in throughout our meeting.

A peak inside my heart will show that with each new situation my heart beats a little faster.

What is their first impression? Ba-bum

What do people think about him? Ba-bum, ba-bum

Will they treat him the same way the same way they treat everyone else? Ba-bum, ba-bum, ba-bum

Will they judge his abilities? Ba-bum, ba-bum, ba-bum, ba-bum

Will they know how to work with him to get his best potential? Ba-bum, ba-bum, ba-bum, ba-bum, ba-bum

With each thought, my heart gets faster and stronger. But the one that makes my heart hammer . . . makes my heart rate skyrocket . . . makes my heart louder than Big Hair Band drum solo is . . .

Will they like him? Will they give him a chance in spite of his global delays? Will they treat with respect the way everyone treats Connor and Kaitlyn? BA-BUM,BA-BUM,BA-BUM,BA-BUM,BA-BUM,BA-BUM

Luckily, we have had nothing but support from family and friends but what about new people? Will they give him a chance before they judge?

I try not to be an anxious person. I enjoy new environments and meeting new people and . . . surprise . . . I am very social. Chatty if you will. But when it comes to bringing JD into a new place or introducing him to new people I get very protective. VERY PROTECTIVE. And I worry. A LOT!

Walking into the brightly colored room on a sunny March day pushing my handsome blonde hair blue-eyed boy in his matte blue wheel chair wearing his maroon football sweater with J. Crew rolled sleeves, jeans, and plaid shoes my heart was pounding out of my chest.

I scan the room of the 4 therapist, 1 teacher, 1 social worker, 1 nurse, and 2 directors searching something.  Searching for a flicker, a gaze, or a flash alerting me to the moment they realize JD is different. More different than most of the kids they work with. I focus on the eyes as the eyes tell it all. People can control the expressions on their face easily but it’s the eyes that betray the emotions.

I scanned, I searched, I looked, and I judged assuming these ladies would in turn judge right back. I  . . . was . . . wrong!

The flicker I saw was a smile that reached the eyes because they were excited to meet JD. The gaze I noticed was the complement of how stylish JD was dressed. And the flash I witnessed was enthusiasm to start working with JD.

JD’s school evaluation was the beginning of what would a very smooth EI to school transition. A process which is known to be difficult, emotional, dreadful and full of fights was genuinely a very pleasant and fulfilling experience for us. 

Charming the ladies at his evaluation

The ladies charming JD


April 6, 2015, 8:22pm

In 8 minutes I will begin packing my baby boy’s school bag. Carefully running through my checklist to insure his bag is fully organized and prepared for his first day of school. JD and I have already met his teachers, therapists, and classmates but tomorrow he will be there all by himself. Nate and I will drive him to school, walk him in, get him settled, and then walk out without him. My stomach is in knots, my heart is pounding, and my mind is spinning. JD will thrive in this environment and continue to look damn handsome while showcasing his new abilities.
Tomorrow will be a remarkable start to whole new chapter in the Gawel family story. From a surprise prenatal diagnosis of a rare syndrome very few doctors had heard of to a 3½ lb baby boy being delivered 4 weeks early to 3½ months in the NICU to many, many, many more hospital stays to wondering if he would make it to his 1st birthday to now heading off to school as an adorable, healthy 3 year old boy. It has been a crazy wonderful ride and we hope you continue this journey with us!

Check the next one off the Gawel Adventure List – James Douglas’ first day of school!!!!

Brothers! Connor loves his brother

Happy 3rd Birthday to this kid with great hair

The thinker