Tuesday, July 12, 2011

JTC - A Letter to Aiden - Days 1 & 2

I am in complete awe. This place is AMAZING. What makes it that way are the people. The teachers and the staff are absolutely phenomenal; what completes it, are the families who come from AROUND THE WORLD. Each family with their own story, their own journey, their own challenges and advice ... ALL with a similar means to an end.

I talk and I share, but even more so though, I do what I work so hard at teaching my deaf child to do, I LISTEN. I've thought about how to share this amazing journey, and all I keep coming back to, is that I want this to be my words to Aiden. So I'm going to mix it between writing him letters, through this blog, and documenting key points to share. One day I hope he'll read this and understand how much of an impact three small weeks can have.

In these letters though, I will highlight some key points that may help some of you as well. If there's anything I've learned in this journey, is that we are not alone. We have to help each other.

Dear Aiden,
Four days ago I packed up many bags to embark on a journey across the good ol' US of A with you and your sister. I knew from reading other's stories, that I, as your mother, needed this, not only for you, but for myself, and our family. This place is amazing, and in the two short days we've been here, it has already impacted our lives.

Your daddy and I decided to bring you here for further evaluations, for a second (and truly a third or fourth) opinion from professionals who have been working with deaf/hoh children for many, many years (over 60 years I believe). We wanted to learn not only from these professionals, but even more so, from the families who travel from around the world with a similar goal for their children.

You have been hearing now for two years and four months, and every single day you amaze us. We still have our worries, and honestly, we probably always will. We came here to get a fresh perspective, to learn how to best help YOU, because YOU have your own story, your own journey, and we're searching for unanswered questions; answers to questions to help us help you soar.

I knew coming here would mean meeting families from around the world. AROUND THE WORLD. What I didn't know, is how much these families would effect me, even in two short days of being with them. It has already been a roller coaster of emotions as I have sat and listened to each their stories, each of their struggles. Every story is different, yet the same. Every story though, has the same plea, to help them better help their child, to reach out to find answers, and understand, and learn ... not just about learning to listen and speak in general, but learning to listen and speak in EACH.AND.EVERY. INDIVIDUAL SITUATION.

SO, what do I want you to remember from the past few days? Here are my highlights:
  • You LOVED the plane ride! We were up at the crack of dawn to catch a 6:30am flight out of Cleveland, with an hour layover in DFW, until we finally arrived in California at 10:40 a.m. - (three hour time change = one tired mommy and two hyped up kids). Oh, and by the way, the only time you slept was 15 minutes before we were due to land in LA. Nice.
  • We're staying in university apartments, yes, where college kids stay during the school year. Makes me want to go back to the day. So much fun, so little luxury. No tv, no microwave, old carpet, and twin beds. The only thing I'm missing is the keg (nevermind that). I pushed our twin beds together though to make a king size bed for all of us to sleep together. Perfect.
  • Again, families are here from around the world - France, UK, Canada, UAE, New Zealand, and all around the United States. The staff at John Tracy says this is one of their biggest groups with so many spouses together and one of their biggest sibling groups ever. Although your daddy is not with us right now, he will be here soon. I gotta say, it's great to hear all these dads talk and open up; you'll understand why I say that one day and I wish your dad could be here now.
  • Kailyn ventured with us. I wanted to bring Ryan too, but, at 14, he was too old for the sibling group (age 12 is the cut-off), and they wouldn't allow him to participate in the parent classes. It was hard to embark on this without him. He's with daddy for a couple weeks, then heading to Texas to visit friends for a week. He assured me he'd rather be in Texas than here without much to do. Your sister has been QUITE.THE.TROOPER. I am SO proud of her and all she has done to step up and help, both of us. You my son, are lucky to have her, and so am I.
  • One of the BEST things about this whole trip is that we are here with your friend Thomas and his mom. I met her before we left Texas, when you and Thomas were just a few months old. We only met once and instantly connected, we were all we had. We kept in touch through email and many therapeutic phone calls. Three years later, we're all here together, getting to truly know each other, although it feels like I've known them forever. and Thomas has a sister close to your sister's age and of course they're girls and already best buds. I know a time will come where we'll all be together again and you and Thomas will be up all night playing video games and talking nonstop while your moms sit and laugh about all we went through to get you both to hear and speak and now can't get you to shut-up. ; )
  • Your first day of class was great. You didn't have any separation issues and you joined right in. You are always shy, and don't like to use your words as much around new situations, but your teacher Betty told me you had good conversational speech with another little boy in your class. I think it's the perfect fit for you.
  • By day two, you already knew a lot of the kids names in your class, your teacher's name, and one of the teacher's aide's names. I'm so proud of you! Thank you teachers for making an imitation booklet of "Brown Bear, Brown Bear" with the teacher's and kid's pictures.
  • Mommy is worn.out. Not only from the trip and three hour time change and the stress and the overwhelming sense of just being here, but even more so, from meeting so many families, and hearing so many stories. The stories and the whole atmosphere has been emotionally draining ... in a very emotional happy kinda way.
  • I miss your brother Ryan and I wish so bad he was here. One of the things I've learned throughout your short three years of life, is this isn't just your journey, it's our family's journey. Being here without Ryan, and your dad for a couple of weeks, seems incomplete. Dad will be here soon, I just wish I would've pushed more for Ryan to be here as well. As much as he doesn't admit it, this journey greatly affects him, it's one of my biggest struggles. Just another reason we're here. I really miss him.
The biggest thing that sticks in my mind from the past two days, "We want to learn from you - the parents, because you (the parents) are the true professionals." Do you know how little I've heard that throughout this journey?!? The staff here has repeated this over and over again. They are one of very few professionals who have ever admitted to NOT knowing MY child better than I do; the only ones who have told me,

"The parent is the most important team member."

Amen to that.

Other key points I took keen note to are:
  • The staff is here to help you figure out the challenges holding your child back AND their strengths to help them overcome these challenges.
  • The staff is here to work as a team (OT, family/child/marriage counselors, speech/language therapists, teachers of the deaf AND the parent) to come up with a plan specifically tailored for YOUR CHILD - not a "one size fits most" type of plan. They will look at social/emotional, sensory and motor, communication, self-help, and cognitive abilities.
More than anything though Aiden, I want you to know that I think you are such a trooper. I see that your hearing loss does not hold you back and that you do not give up until you get your desired results. You my son, are SIMPLY.AMAZING. and I couldn't be more proud.

To end, I have to quote from your sister,

"I'm so glad Aiden is deaf."

to which I looked at her, with a smile, because I knew exactly what she meant.

"Because if he wasn't deaf mom, we would never be here in California learning and making all these great friendships from all over the world."

What a great life experience you've brought to many honey. and I wouldn't change anything about you for the world.


leah said...

John Tracy is absolutely, wonderfully amazing. I miss the program so very much: thank you for blogging - not only for Aiden, of course, but for the rest of us, who need to be reminded of some of the lessons from JTC that we might have forgotten. I remember that experience so strongly - and it has helped us so very much. I don't know if we can ever say "thank you" enough to the team at JTC!

Looking forward to the rest of your blog, and remembering: "If you're ready to go to school, clap your hands!"

Susannah said...

maybe i'm just emotional this morning, but this post made me cry! MANY years ago, pre-kids, matt & i had a friend who taught at jtc, so we'd visit her there. it seemed like such an amazing place, and i of course had no clue we would one day have a deaf child. now that we are at a sister school to jtc that is also amazing (but not quite as much at jtc!), i realize even more how miraculous what i was experiencing so many years ago.

soak up your time!

Danielle said...

wow beautiful had tears in my eyes. glad you like john tracy I heard so many good things about that place.

BILOI said...

While our son's illness differs, I understand how it feels to have a special child.

With God's continuing grace and our great love for our child we will surely endure this journey.

I hope you can visit the blog I created for my entitled "My Heart's Journey" under www.biloi.blogspot.com.

God bless us all!