Sunday, February 13, 2011

Reliving the Reality

I have a new meaning for IEP - Intense Emotional Process.

Most of last week and much of this weekend were spent preparing for Aiden's IEP this Monday. I know I have totally skipped over posts on things we've gone through in transitioning from an IFSP to an IEP, prepping for his IEP, preschools we've visited (and what we looked for) checklists we used when visiting these schools, the school chosen and why, etc. I can only say that my life lately has been absolutely nonstop between three kids and three different "opportunities" I'm tackling between them. I will say that Aiden's IEP is not the only one I'm preparing for, but I'm hoping it's easier than the fight we're going through to get Aiden's sister the appropriate accommodations/services she deserves.

Bottom line: it has been a very emotional week, and honestly, I'm quite spent.

In preparation for his IEP, I spent a morning and afternoon putting together a timeline of events from Aiden's hearing journey (from failing the newborn hearing screen to a synopsis on mapping issues this past year). I also included his speech/AV therapy timeline, his gross motor timeline and a paragraph on his sensory integration, especially since these all still need attention. I am so thankful for this blog as it physically made this task much easier.

Emotionally, it wore me out.

As I found dates throughout past posts, I read. As I read, I relived each.and.every memory, each appointment, each bad day, each milestone. I relived the feelings of complete numbness from when we found out Aiden was deaf to complete fear from all of the unknowns to complete worry of how he'd be treated having to wear this equipment throughout his life. I relived the feelings of complete relief from when I held him after his surgery to complete awe the day he heard his first sounds. As memories and feelings resurfaced, I cried. I cried tears of sorrow. I cried tears of joy. and then I cried with the overwhelming sense of it all.

This whole process has brought back to reality, like a slap in the face, "My son is deaf," and it's scary.

and all the fear for my son that I had in the beginning, that I thought was under control, has resurfaced and I realize how much of it still lingers inside wondering what the future holds for our "binky boy".

After my walk down memory lane, I moved on to write a page to the IEP team introducing Aiden. I want this team of educators, psychologists, and therapists, who will be part of our team in making decisions for Aiden, writing goals for Aiden, teaching and working with Aiden, to know WHO AIDEN IS as Aiden, not as a deaf child who wears cochlear implants.

I didn't hold back. I got emotional, but they need to know, Aiden is our child first, their student second. We will not hold back, as Aiden's parents, in fighting for everything we believe will benefit our child. We want them to know, we have our own goals for Aiden, goals which we call HOPES, that can't be measured or written into any IEP.

and here's what I wrote:

Introducing Aiden
Aiden came to our world on March 17, 2008. He was born in Texas where we lived for the first 7months of his life before moving to Maryland and then a year later, to Ohio. He is the youngest of three. His brother Ryan is 14, and sister Kailyn is 10. He adores his siblings. He also likes to talk about his two cats, Baby and Bones, and dog, Bella.

Our Favorite Aiden Qualities
Aiden is a very bubbly, go with the flow child. He is always smiling and is very affectionate. He can be quite shy when put on the spot and has never been one to participate much in his therapies. He's always had a quiet disposition and can be a boy of few words, yet in the same breath, he talks nonstop at home, but on his own terms. He loves playing with nearly any toy, but his favorite toys have a means to an end. He loves building with blocks, tearing things apart only to piece them back together, and figuring "things" out. To him, everything has a place and it needs to be in the right place--he is our future engineer. He catches on quickly to things and truly is a bright child. He loves Mickey Mouse, m&m's, oranges, chocolate milk, and his mom's iPhone. He loves playing with other kids, is good at sharing, and loves to help. All in all, Aiden is an easy child to get along with and has a delightfully addictive personality.

Our Hopes for Aiden
Our biggest hope is that people do not define Aiden for his hearing loss,
that he is not identified as "a deaf kid with cochlear implants",
but is defined for who he is as a person.

We hope Aiden's preschool years offer him a solid foundation of communication, language,
listening skills, literacy, and self advocacy.

We hope all this will allow him a smooth transition into a mainstream school with hearing peers in a setting with minimal interventions. His hearing loss will not hold him back.

We hope to help Aiden build a strong positive self esteem and instill a realization within him that he can achieve anything he puts his heart and soul into.

We hope he comes to believe that his opportunities are limitless.

We hope Aiden continues to keep his upbeat, positive, happy-go-lucky disposition and that rude comments/bullying does not tear it down or change the person he is.

We hope that Aiden will play alongside hearing peers and not feel (or be seen) differently because he hears in a different way.

We hope Aiden will learn to advocate for himself and never feel held back.

We hope that Aiden SOARS - and he will.


Mom to Toes said...

Tammy, this one of my favorite blog posts ever. That is such a great description of Aiden! Throw away all the checklists and "should dos" and get to the heart of it.

You are a great role model for moms going through the same thing. It's so easy to get mired in the politics, uncertainty and negotation of an IEP and forget what is truly important - the child. It's about who he is and what he needs. Nothing more.

He is one lucky boy - and he is going to soar.

Emily said...

Your "introduction" is amazing. It brings tears to my eyes. Aiden is incredibly lucky to have such an awesome mommy who will fight for him and ensure he gets the treatment and encouragement he deserves. His hearing loss does not define him at all. ;)