Sunday, July 24, 2011

Another Hurdle?

Okay, so I got up extra early the other morning, before the troops, and started to summarize the last two weeks at JTC, but never finished. I was trying to say too much at once.

Now I'm back. and while I want (and will) summarize this completely amazing trip as much as possible, I have to write from the heart. Because that's how I write best. Before I give out all these amazing tips and lessons learned, before I write about all the extremely phenomenal life long friendships I've made, before I tell you ALL I've learned, I have to get out what's on my heart.

It was a very hard week for me. I'm going to be very upfront. I know I shouldn't compare my kid. I know I shouldn't me sad for my child when I look at how amazing another child is doing - but guess what? I have. I do. and of course I am SOOOO happy to see these children excelling and speaking. OF COURSE I am!

but in my mommy heart, I also know there's something else going on, and before this trip, had no clue where to turn. my heart hurt and my tears flowed. Because now, I'm getting a clue.

We came to John Tracy hoping for yet another opinion on why Aiden's spoken language seems to be delayed. They (meaning the statistics) say (something like this - not exact numbers, but close), "when your child has a receptive vocabulary of x amount of words, they will start saying their first words. When that receptive vocabulary grows to x amount, they will start putting two and three words together. etc. etc." (I have the statistics at home, so I can't quote them directly). Aiden's receptive vocabulary is HUGE! His expressive vocabulary is HUGE - as long as he is saying the words in isolation or within a two to three word sentence. He is GREAT at repeating and imitating a model, but when he tries to spontaneously put words together, it is a jumbled mess. I've been told, "he's a boy". I've been told, "it's just taking him a bit longer". I've been told, "he says PERFECT blends (i.e. SNake, and TRain, etc) and it will come when it comes". I've been told "he can say a four/five word sentences", yet he's been modeling that specific sentence for months, and it's probably one of a few.

I'm watching kids here, who were implanted a whole year after Aiden, who are answering "W type" questions. I'm watching kids here talk into the microphone each morning and say a pretty damn good, "Good morning friends." When Aiden says it, you can barely understand it because it's all jumbled together ... more like, "goo-orng". seriously. Aiden is a great imitator. He has a HUGE receptive and expressive vocabulary list. Aiden is SO ON cognitively, but again, something's missing.

Last week we had our one hour speech therapy here at JTC (with a cert. AVT). We played "Guess what's in the bag" and showed him the three categories of items. He knows farm animals, food, and clothes categories ... he knows them. Yet, when something was described to him, he could not vocalize what he needed to.

Something is missing. After one particular morning of listening to Aiden speak in class, I met with his SLT, holding back tears. I had just witnessed a situation of Aiden putting multiple words (like 3 to 4) together, spontaneously with a classmate and didn't understand him. Simple words he knew. She asked me what my heart felt, and I told her, I felt something else was going on. She suggested getting him tested for Apraxia. She thought we should get other avenues tested and gave me the tools to find a good center in our area.

BUT ...

It just so happens that at the same time as we're here, that an AG Bell conference was happening in DC and one of Aiden's first AV therapists attended a class about CI kids who are not performing as well as expected. She knew our story. The class talked about these kids being misdiagnosed with Apraxia when in fact, it had to do with their maps. And she found me a local CA resource to provide another opinion.

So, here are our next steps:
  • We're calling this audiologist in the San Diego area, who specializes in similar situations to get a second (or truly third) opinion on Aiden's program ... because without the right program, a child will not move forward.
  • We're checking out, with the help of Aiden's SLT here at JTC, where we can get him tested for Apraxia or similar disorders in our area.
What does our future possibly look like?
  • All depends on the above two factors. The audiologist at JTC believes he has a good map. They say it could be better, but it's good. If we find out that his map is good from yet another third opinion, we have another evaluation on our hands.
  • If he tests to have apraxia, we have yet another therapy on our hands. and a therapy that is almost like starting from day one. BUT we will move forward. I will not stop.
I can truly say I'm spent. Of course I will do ANYTHING to get my child the help he needs. I will do ANYTHING to get him there. I'm not ready for this, yet I believe I've known, and have been preparing myself for the next step no matter what it may be. So I have to be there. No matter what the outcome may be. I have to be ready. yet, it tears me up inside.

So my questions to you:
  • Do you have a child with CIs and Apraxia (or something similar)?
  • What is the therapy like?
  • Do you have a child who gets it receptively and cognitively, and somewhat expressively, but couldn't put the words together because of a bad map and finally figured out what the problem was?
I have to find answers. For me, but even more so, for my boy. I will not give up.

Thursday, July 14, 2011

Small World

I am whooped. It has been a LONG week here at JTC, yet one that has flown by. I already don't want it to end. Since I've been staying up very LATE and getting up very EARLY, I will recap the last couple of days tomorrow morning or this weekend.

But I just had to share this.

Dear Aiden,
Today, T's mommy (he is in your class, but about a year younger than you) came up to me and asked me when you were implanted. We had been talking and she too, had the same phenomenal surgeon at Johns Hopkins as you had. She flew all the way from United Arab Emirates to have sweet Thomas implanted there. They also have the same wonderful audiologist you started with and whom I miss dearly!

Anyway, after I told her your surgery date, February 11th, 2009, she proceeded to ask,

"Is it your Aiden who was in the National Geographic article on cochlear implants? I knew he looked familiar and when you said he was implanted at JHU, I knew it had to be true. I can't believe I'm here with him."

and she continued (not word for word, but main points) ...

"... Thank you so much! It was because of that article, because of seeing Aiden's beautiful face, with that smile. He looked so happy, so normal, so .... thank you. It was because of the write up, his picture, that provided us more comfort to move forward and it helped in our decision to have T implanted. It helped me talk to family members who weren't comfortable with the surgery, it helped me show family and friends what cochlear implants were all about ... "

I was in complete tears.

She continued to let me know how you are still talked about there (at JHU) and what a rockstar you are in their eyes. She knew your name before she even met you; and now, we're here, learning, embracing, together.

You truly are amazing and I hope one day you realize the impact you and your story have had on SO many. Your vibrant eyes and smile, vivacious personality, that pure silliness, and your determination and perseverance all SHINE through. It ALL shines through. I love you and are SO proud of you sweet baby!!


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.

Sunday, July 10, 2011

We're Here!

Okay, so I got up extra early this morning to sit at my computer and have some peace and quiet time ... low and behold, the kids were up right behind me, so this is going to be short and sweet. As you can tell from the date of my last post (forever ago), that our summer has been absolutely nonstop, and the only sign in my future is yield - no stopping here until school starts again. Craziness, but loving it.

Anyway, WE'RE HERE!!! My clan of two and I have arrived at the third summer session, 2011, at the JOHN TRACY CLINIC in California. I am completely anxious, nervous, in awe, excited, teary eyed, flabbergasted, smiling ear to ear, completely exhausted, all in one.

We flew out yesterday morning at the crack of dawn, got to LA, road around the interstates surrounding the city a couple times (since I missed my exit the first time and was too scared to get off at any other exit in fear of finding a place I had no business being in), and FINALLY found the apartments. Nutso.

The apartments are old, but clean. Of course I had to do my own scrub down too. Found a grocery store and stocked up on all the necessities to live the next three weeks. I hate to go crazy, but we're venturing out again today for a few other things, mainly, a coffee pot, a trash can, and some hangers. This girl needs her coffee.

While running around, we ran into families coming in. The teary eyed part from above comes from meeting all these families who came from around the world to be a part of this amazing program, all for their own reasons, but the core all the same - they want their deaf/hoh child to hear and speak. Aiden's daddy and I have our own reasons for seeking out the program and professionals at JTC, which I'll get into later.

This afternoon is the meet and greet. My goal is to keep a daily journal through my blog of our adventures and the program. I'll try my best anyway, because single momming it with two kids and no tv is not easy. ; ) For now, I have two crazed kids and need to get to Target before all of LA is out and about.