Monday, June 19, 2017

Remember that "amazing" idea I had.... You should try it!

Last fall when I shared the first session of Parker’s senior pictures with some of his friends, I said it was just one part of a secret project I was working on. And it was, as I had this incredible vision for a project that was going to be the most amazing thing, incredibly personal, heartfelt and truly encompassing Parker’s journey through school to this point. The kid was going to walk across the stage at graduation with his class, this was beyond significant and something that was about as surreal as it gets.

Yes, he would be returning in the fall for more schooling but this was such a milestone I wanted to capture what I was seeing each time I closed my eyes and filled with pride at how far he has come.
When I closed my eyes and took a minute to appreciate the moment we were in and what was about to happen I always saw the same thing – every single teacher, parapro, therapist, support staff individual that had worked with Parker over the years beaming with pride.

The truth is (and I hope I have conveyed this clearly over the years) that Parker hasn’t become the amazing person he is just because I’m his mom or because he’s the most awesome son ever. He’s reached this point because of the people around him. And I am thankful for each of them.

Over the years he’s had one amazing teacher after another. One amazing parapro after another. One amazing therapists after another. One amazing support staff after another. All of them, amazing. All of the contributing to help shape him into this amazing young man. Each of them had faced their challenges with him, some pretty significant, but not a single one of them ever gave up on him. No one ever tossed up their hands and said, “Yeah, too much. Not helping this kid” and walked away. And believe me, he gave some of them pretty solid reasons to do just that. Thankfully, they never did.
They fought and worked tirelessly to bring out to shine the incredible soul that is in my son and often overshadowed by his disability. They pushed him to do things that seemed out of reach knowing he had it in him. And possibly the most challenging of all, they sat across the table from me at every IEP meeting. They were on the other end of the emails I sent, the notebook I wrote in, the phones I called. They were there when I was at the school demanding change. There were times we did not agree. Times I didn’t feel there was an understanding of his disability, times I brought in experts from Colorado to help them understand him. Times we had specialists conference call in from California. Times they compromised and times I compromised. Each of us with one person in mind – Parker. Each of them earning my respect and appreciation. We all stood our ground on what we knew was best and learned that working together we could make an individualized to Parker version of that happen.

Parker wasn’t the only one who learned a lot from them, I did as well. And I hope they learned something (positive) from me too. 

I reached out to each of them asking for them to be a part of a picture with Parker in his cap and gown the day before Graduation. I wanted something that showed him surrounded by these amazing individuals who helped him reach this milestone.

I had this vision… my son in his cap and gown, smiling, surrounded by these amazing people. Something like this…

Well, except with all of Parker and well, people we know!
 Or this…

Woo Hoo! We did it!

I even thought we might be able to get individual pictures of him with each  - or at least many – of them and Parker.

As I reached out to them, I thanked them for being a part of his journey, for making a difference in his life. I wanted them to know the important role they played and the appreciation I have.

Up to this point, everything was really perfect. The response was incredible. The photographer was excited. This was going to be the most amazing keepsake, this picture of Parker and about 50 other people. In my mind, Parker was going to LOVE this. He was going to walk in wearing his cap and gown, smiling, proud, happy to see everyone and we were going to capture this amazing moment forever. I mean, really, what else would I think?

As the date got closer, life became more hectic. The reality of the time of year took a hit on the number of people able to attend. There were many graduations and graduation parties that day, family commitments and his kindergarten teacher was in Italy on a vacation with her sisters!

That was ok. I knew that whoever could make it would be perfect. I knew getting everyone was impossible and was happy with knowing that at least 1 person could be there. We planned to take the picture outdoors on the football field bleachers.

Awesome. It was on the calendar and I had started to tell Parker to prepare him. This kid was rocking everything and told me “ok” about the picture so we were on track.

And then the day came. And it rained. No big deal, we had a plan B. We were moving the photoshoot inside. I always have a plan B. This was nothing. We were ready… right up until it was time to go and Parker said, “no way.” You know, that moment when he reminded me that no matter how far he has come, he still has Fragile X. He still has anxiety. He still gets overwhelmed. He still had a lot on his plate for this big weekend.

No big deal, I had a plan B. I called in his friend Remi. They had been together since kindergarten and we told Parker this was a “senior” thing and she was doing pictures too. We picked her up and back on track. Score!

We arrived at the school, Parker did a pretty good job of walking in the door with Remi right up until he saw all of these familiar faces. Faces of people I told him would be there. Friendly, proud, smiling faces all ready and waiting for him.

And that’s when Fragile X took control of the photo shoot.

Parker dropped to the ground. Laying flat, snoring. Not budging.

Danielle took some pictures of those who could attend and then most of them stepped away – retreating to the library with the plan of getting Parker settled and them slowly coming back into the picture behind him.

With some coaxing, Parker budged from the doorway to the spot in front of the steps before laying flat on the ground. I tried everything. Remi tried everything. Mrs. Wildebour tried everything. We even brought his Cubs World Series hat for a picture with Mrs. Wildebour with her Pirates hat. We made good progress there and I thought we were turning a corner. These great pictures were snapped. But as quickly as it happened it stopped again.

Cubs Vs Pirates, these 2 have a bond that will last forever

Feeling defeated I asked Remi what her dad, a family friend, was doing. “Hotdog” (known as Jeff to the rest of the world) had come to Parker’s aid more than once over the years. He was here last year to shave Parker before prom when I couldn’t figure out how to work the razor. He was someone Parker responded well to. It’s hard not to listen to Hotdog. He’s a giant that towers over everyone and has the voice to back it up, not to mention the glare of the eye. He’s not someone you mess with.
More importantly, he’s someone Parker looks up to and responds amazingly to. Not because he can be intimidating but because he’s always willing to get down on Parker’s level. There is a mutual respect between these two friends.

Within minutes Hotdog was there. I truly thought that as soon as he’d tell Parker what to do, Parker would respond. That totally did not happen. Instead, this did.

And this did...

I mean really, this is why Parker loves Hotdog so much. We all do. How do you not love someone willing to lay on the floor in front of a bunch of people with you to help you through a moment?

We were finally able to get Parker’s gown on him but he was not in any way putting the cap on. Totally fine. The Cubs hat worked for me. I’m not that picky. I just wanted the picture. Danielle was able to get some shots of Parker by himself. As we tried to sneak everyone else back in, my guy with superhero senses, bolted, right back to the floor.

Ok, this is do-able...

not easy but doable...  

That smile... gets me every time :-)

And we are fading...

And we are done.

We agreed at that point to stop trying. That Danielle would see what magic she could work to create this picture with the pictures that had been taken.

As everyone started to leave, the final few got Parker hugs, which Danielle also captured.

Mrs. Wildebour, Parker's parapro for his freshman, sophomore and junior years.

Mrs. Volhand, Parker's High School teacher for all 4 years and will be there for him when he returns in August.

Our amazing principal, Mrs. Watts

And of course, Hotdog

The result is a picture which is awesome to me for many reasons. While it only includes a fraction of the people who worked with him it covers every place he attended school, each chapter of his life. Westview, Eastview, Ingersoll Middle School and Canton High School with at least one person from each building. Each part of his journey is represented by someone who is dear to us. Each one of them love him unconditionally and have followed his journey over the years. Each one played an incredibly important part in helping him be the amazing, successful young man that he is.

An incredible representation of the many who helped Parker become the amazing young man he is today. Teachers, parapros, support staff, therapists... truly dedicated and incredible professionals who have worked with Parker every year since he was 3. We've truly come a long way! I truly treasure each person in this picture. 

As crazy as this is going to sound, I love that Parker was added into the photo. Because that is the reality of our life. While my heart was a little sad that this experience wasn’t this smiling kid proudly strutting around in his cap and gown, the truth was that was incredibly unrealistic for Parker. And, I knew so. I just didn’t want to admit it. This is something most people won’t realize but I will know (well and now you since I told you) which truly reflects our life. Everything looks pretty and pulled together from the outside and in some ways it is – it just doesn’t happen easily or naturally due to the challenges in our path. The beautiful picture pieced together is what you see from us each day. It’s the struggles to get each of those pieces that aren’t always seen.

It’s the beautiful pieced together picture that reflects the amazing patience, understanding, compassion, determination and unconditional love that is our life. It is our journey. It is us.

I still think this is an amazing idea. It’s one I hope others give a try, hopefully with a bit more ease. To me, it’s the most humble and from my heart “thank you” I could give to each of these amazing people who became a part of our life, believed in my son and helped shape him into the Parker he is today. And while that young man sometimes is overwhelmed by his disability, he sometimes rocks it too, like when he crossed the stage at graduation the next day representing each of these amazing individuals who took the time with him over the years to reach a point some thought would never happen. Together, we did it. And I will forever be thankful to every single one of them.

I’d love to see someone else give this a try! More importantly, I hope you thank the teachers, therapists, parapros, support staff and everyone who helps and believes in your child. They are, after all, pretty amazing people!

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