ECI Graduation

After we found out Will has Leigh’s disease I pretty much can’t see him past the age of five. I know that’s not always healthy, but for whatever reason it helps me compartmentalize a lot of unpleasant stuff. Obviously, I thought I would never get to see Will graduate from high school and walk across the stage in a cap and gown.

Well, I got a little taste of what it might be like and I think this memory will likely stay with me and I’ll reflect on these pictures whenever his peers graduate from high school and all the families are fussing over gown adjustments etc.

For the past two years we’ve worked with Early Childhood Intervention (ECI). It’s a state run program that provides therapy services for children under the age of three on a sliding scale payment system. We have absolutely had a great experience with ECI and on Monday, April 16 Will officially graduated from ECI. They do a little cap and gown ceremony etc. You can see more pictures here.

Ode to our friends:

Ms. Melissa – our developmental therapist who helped me figure out how to get Will to suck on a sippy cup, instill good discipline and overall be an incredible sounding board for us – THANK YOU.

Ms. Risa – Will’s occupational therapist who taught me and Will how Will could and should chew. I think she eventually had to “graduate me” as Will was doing his work, I just was paranoid. Once you see your child choking, grasping for air and not looking like he was going to make it, you realize just how quickly it can happen. Cheers to all the finger hooks, back slaps and never-ending seconds of fear. He still has his moments, but all to say, he can even do chips and gummy bears --- With EXTREME caution and a watching eye. It’s an incredible gift to watch Will enjoy pizza at birthday parties with his peers and chug down a Capri Sun. One day all that might be out of a G-tube, but I will treasure cutting up his food into tiny morsels every night for dinner and snacks/lunch the following day because I know how hard he worked to get there.

And then there is Mr. George – Will’s physical therapist. During the past two years, Mr. George has been one of the biggest constants in our lives. Every week we met to work with Will and his physical strength. I could go on for days about Mr. George. Will literally asks for Mr. George three or four days out of the week. I always am a tad miffed because if I had someone make me work as hard at George does I wouldn’t be that excited to see them, but 9 times out of 10, Will is waiting with a gleeful expression for George to arrive. The early days of Will walking surprised the heck out of everyone, a mostly of all I think George was surprised. One thing is for sure; Will is a very determined little man. I can’t figure out where he got that from???

I was telling our therapist the other day that this ECI graduation really marks the end of more than just a provider or vendor relationship. George, Risa and Melissa were on this journey to diagnosis with us. They cried with us when I told them about Will’s diagnosis.

For a long time, I felt very alone on this journey to diagnosis. It was a source of frustration between me and Neil – for a variety of reasons. Something told me to fight for diagnosis even if it meant looking like a crazy obsessed mother. (BTW – there actually is a disease it’s called Munchausen by proxy syndrome).

Anyways, I digress. These three people were a surprising source of support, freedom and honest feedback. They could objectively see Will was struggling and were not afraid to say so and work towards improvement.

So, I guess that was all a really long winded way of saying thank you. These three people have helped give us a gift that so many others take for granted and that so many others won’t get to experience. Hearing Will say, I love you forever and always. Walking to get his water cup. Chewing up real food. My gratitude goes beyond words.

Dad zipping up his gown

I'm ready people!

Proud dad! (and mom behind the camera)

Will was NOT into getting his picture taken.

So, George, me and Barney took a picture as Will ignored us in the back.

George brought a special therapy tool!

Will thought that was pretty cool!

The broom that Will used to help clean all the balls up

A special thank you to my mom. She helped me SO much with therapy, especially the chew therapy as they would often happen during the middle of the day. She was and continues to be an incredible support system for us in this journey. Thank you mom. Will is where he is today because of your help.

Good bye hug to Mr. George.

BTW: I think Mr. George is why Will has an obession with Barney. That furry dinosour was a constant friend in therapy.

Ode to Mr. George

Let me rewind to July/August 2010. Will's pedi recommended we call ECI - Early Childhood Intervention - to get therapy started. Insert MAJOR skepticism on our part. Really? A state program that will provide therapy? This sounds sketchy.

So we got started with the ever infamous "case manager" and "assessment" process who helped us identify what we qualify for in regards to therapy. Insert Mr. George, as we affectionately call him.

I still remember our first appt. Mr. George brought in this $3 IKEA bench and an exercise ball. Will could not sit to stand off that bench. In retrospect, he really was a floppy mess. It was eye opening. Depressing and exciting all at the same time. We had NO idea what was wrong, but PT felt like we were taking action, making progress. And progress we made! (BTW: I now own three of these IKEA benches :-)

Mr. George, and the other ECI therapists we love and will receive a post soon, could technically have been called MY first (mental) therapists as well. He was this connection to a world I knew nothing about. I'm sure he dreaded seeing me with my unending questions about the future and how Will was REALLLY doing and what did he think was wrong. Luckily, Will is so stinking cute that George  tolerated me :-)

George showed me how to help Will do exercises at home and a short four months into therapy Will took his first few independent steps and finally on Christmas day he just took off walking. Now, nearly a year after walking his stability has significantly improved and we're working on climbing stairs.

People joke that I have Will in 24/7 therapy. There was a really long time period where I ran around behind his every move to make sure he was in the correct form and using the big muscles instead of relying on this "tricks" he used to get around. I would make him redo it correctly if he cheated. Every night we came home and did ball exercises. I put on the music channel and we "danced" with the ball. So on... I've edged of some.

We have no idea if Will is ever going to be able to run, jump, ride a bike and so on, but George gave us a gift that I truly believe no one else could have done as effectively or with the same intensity of love, he gave Will independence.

I could go on for literally days about how wonderful Mr. George has been. He has left an impact on our lives that I didn't expect. Will absolutely loves this man. He shrieks with excitement when I tell him Mr. George is coming and waits by the door for him to arrive. I dread thinking of the day when ECI services end (at age 3, that's April...) and not having him be part of Will's life. What the most insane part about this is to me is George makes him WORK. I mean, he puts him through the ringer and Will still loves seeing him. Will grunts and is clearly working hard. Obviously their bond is strong.

Today I tried to capture some pictures from therapy. Please join me in saying a HUGE THANK YOU to Mr. George, his bag of tricks and his pure heart. He will always be part of our lives.

Got the weight belt on, getting warmed up.

I should bring another ball and do the exercises with Will too :-) They are HARD!

The only person I know who lets kids kick his toys and his cell phone.

Whew! It's all over, for today at least.