Thursday, April 21, 2016

Destination ... Prom Chapter 5: Life takes 2 .. and a team

In our home, most life events no matter the size take 2 things: Preparation and Practice.   Our journey to prom has been a constant reminder of both and the importance of a solid team. Even more importantly, it's been a reminder of how amazing the people in our community - and our world - really are.

We've seen the very best in everyone who has been a part of this journey and the list continues to grow.  I may have gotten the ball rolling and continue to direct it's path but it is truly the efforts of many that has gotten us to where we are today and that will be the reason Parker is successful on Saturday at his first prom. 

While the majority of the comments I hear from people are incredibly positive and supportive there are a few that have the impression that this is just "happening". That Parker going to prom is just as "simple" (I use that word "simple" very lightly now as a mom with almost 1 prom under her belt - trust me when I say there is nothing simple about getting your child ready for prom for any parent!  From tux rental/dress shopping to tickets/flowers/hair/pictures all weaved in the incredibly busy schedules of a 16, 17 or 18 year old is not "simple" at all for anyone!) as it is for everyone else attending. The reality is - it isn't. This has been months - literally, months - in the making. This has been a collaboration of school staff (teachers, prom advisors, Parker's para-pro and the principal) along with a lot of planning with Rylee and multiple other friends. A lot, not even as much as I would have liked but... well, life. 

Every plan that is in place now is thanks to a team of people helping to make this happen. The best example I have ever seen of collaboration of school personnel and a family. We started to brainstorm in January, laying out a plan for the next few months. What challenges might we face, what timeline we were working with, who would be involved.  Together - we prepared.

Preparing Parker has been more than just our calendar and talks at home, it's a calendar count-down at school, it's review of what the day will consist of, it's practicing with friends. Practicing everything from how to stand for pictures, how to sit nice at a big meal with food you don't like and have nice dinner conversation in a crowded room, how to walk with someone on your arm, how to turn in your tickets, how to.... you name it - we've covered it, prepared and been practicing it.

Up until now the majority of the preparing has been with Rylee (who has been the most amazing friend and support through all of this imaginable!), Drew, Mrs. Wildebour and myself. The behind the scenes planning with the team (Mrs. Eberle, Mrs. Schoonover, Mrs. Vohland, Mrs. Wildebour, Mrs, Watts, Rylee and myself) has been significantly more detail oriented (ex: there are steep steps at the place prom is held - last year students were stuck on the steps for up to 15 minutes - is there an alternate route Parker can use? Of course! And it's worked out!).

The dance, itself, has never been much of a concern for me. I know Parker will do great, he's been to many dances. It's Grand March that has had me popping Xanax to prevent panic attacks :-) While in my heart, after working with the school, I know this will be fine - it still meant we needed to be very thoughtful of where Parker is in the line-up, who he is by and the ability to practice.

When the line-up was announced, we learned Parker and Rylee will be the 29th in line.  In front of them, Parker's friend Preston with his date. Behind them, Parker's friend Jacob with his date. The next step was to reach out to Preston and Jacob to see if they could practice Grand March with Parker and Rylee. We would need to do this multiple times. Parker needs to learn how to walk with Rylee on his side, where to put his hands, where to walk, when to stop, when to start walking again, what steps to go down and where to exit. Practice to prepare him would need to be repeated multiple times plus after the backdrop is in place and under the spotlights of the auditorium. This would mean practicing either before school, after school or at lunch. After talking with Preston, Jacob, Rylee and Mrs. Vohland we agreed the last 10 minutes of B lunch (which Rylee, Jacob and Preston all have) would be best, it would mean pulling Parker from science but we knew his work could be completed in study hall if need be. With the plan in place - practice started.

It started first with Parker and his (more amazing than words can describe) para-pro, Mrs. Wildebour. They have been practicing 1st hour. She taught Parker the pattern to walk and to put one hand on his tummy (Rylee will hook her arm into this arm) and not to move it - if he moves that hand "Rylee might fall" and we cannot let Rylee fall! The other hand she quickly discovered needed a place too - the place became his pocket.  Putting his hand in his pocket meant not using it to cover his face :-) 

Rylee and Parker practicing - the lights are BRIGHT! 

After Rylee was worked into the practice, Preston and Jacob were added.  Everyone with a "job" to not only provide Parker with peers that he looks up to to model but also to remind him that he's not alone.  And, importantly, to put purpose, a start and finish, behind what he was going to do. Parker's "job" is to follow Preston all the way to the back of the auditorium. Preston's "job" is to show Parker how to walk with his date and remind him that he will be at the end waiting. Jacob's "job" is to remind Parker to watch Preston and that he is right behind him with his date.

The first practices started with Rylee, Parker, Preston and Jacob.  Next they added in a couple of girls for Preston and Jacob to escort, just as they will at prom.  The first big test of how Parker would do in front of a crowd came yesterday as Preston, Rylee, Parker and Jacob took their turn walking the Grand March path in the auditorium in front of the entire (cheering) junior class!  It went off - mostly - without a hitch.  At the first stopping point for Parker and Rylee - everyone cheered which took Parker's hand from his pocket and landed it on top of his head, partially covering his face. His smiling face :-) He loved the attention :-) He also never, not once moved the hand on his tummy - the one that "has to stay right there" so "Rylee does not fall".  He never let go of his friend :-) *It's ok to "Awwww" there - I know I did!  There should not be clapping at the stopping point during the real Grand March so while we are working on reminders to keep his hands in place, it's not a top concern.  Additionally, if he does get nervous and cover his face - Rylee and I are ok with that too :-) We just want to see him successfully make it across the stage and through the auditorium. Just in case there is last minute butterflies for Parker - the ever so awesome Drew will be a few people behind to lend a supportive hand. 

There is a lot to be said for inclusion. We wouldn't be in this position without it. Inclusion doesn't necessarily mean acceptance though. I've spent many, many years going into the schools and talking to Parker's peers about what Fragile X Syndrome is, how it affects him and how they can be his friend - I've helped them understand his disability and put the power in their hands to make a difference.  I've seen many, many teachers promote inclusive activities. I've seen many parents encourage and support their children to ask questions, to learn more and to be friends with students like Parker. It was never one thing. It wasn't just me. It wasn't just "inclusion". It wasn't just the teachers. It wasn't just the parents. It was all of us. It still is all of us. 

We have a choice - as individuals and as parents. We can choose to support, accept and be friends with someone who is differently abled or we can choose to ignore, bully and not identify with them. It's life long. For all of us. 

I can tell you that the pride I have in Rylee, Preston, Jacob and Drew is out of this world incredible. They are amazing, supportive and accepting ... they see Parker for Parker.  They are, simply - his friends. Just like they would for any other friend, they are there to support him.

While it feels to me as though no one could be more proud of each of them - I can tell you first hand their parents (and teachers) pride is exploding :-) They are encouraging, supportive and not afraid to tell anyone how proud they are at what incredible friends their children are with Parker. *THESE are reasons inclusion works. It takes everyone to believe in each other, to be proud and encouraging of these actions and support everyone involved for inclusion to be successful. 

I want to tell you I live in the most amazing community in the world - and, well, I do. But, odds are so do you. It won't happen on it's own.  It takes your involvement and the involvement of those in your school and community - it will take stepping outside of your box often to bring the awareness and provide the opportunities - but the end results are the very best ever. 

For us, for Parker, for his first prom... the end results are coming up on Saturday!!!

We didn't get here alone. It took preparation, practice and an amazing team.  Most importantly, it took friendship.  While Parker still struggles to find the right words, I know how thankful he is for each of his friends who have stepped up to make this experience amazing for him.

And for the long list of friends eagerly waiting for prom to share this experience with their friend, Parker, they will complete this magical night... I can't wait to see the selfies and pictures that come after they arrive at prom!

Until then... one step at a time. One more Grand March practice with friends before our big day!

Jacob, Rylee, Parker, Josie and Preston practicing for Grand March

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