Friday, February 17, 2012

New Beginnings

As we approach Aiden's third hearing birthday (and fourth birthday - WOW), I have to say that I never thought we'd be where we are today. I envisioned that all therapy would be behind us, except for check-ins here and there; that he'd be talking in full blown sentences, excited to tell me all about his day at school; that he'd be making up stories with details galore and talking so fast I have to tell him to slow down; that he'd be singing songs from front to finish as he danced around the living room. I envisioned he'd be at least caught up, if not beyond, his hearing peers, both receptively and expressively. To me, this wasn't a doubt. It's where we'd be.


But I was wrong. What I didn't envision is that he'd have social/pragmatic challenges; I didn't see us in weekly OT sessions for sensory processing and praxis challenges that not only effect many motor tasks, but things (that seem) as simple as multiple syllable words and sentence production; that we'd need a speech therapist on top of our AVT in order to close the gap on articulation challenges and to help him expressively speak, what he knows, more intelligibly. I never knew just how much work it is to talk and if all the "systems" aren't planning and working together, talking is one of the most difficult tasks even for a hearing child. I didn't envision awesome speech (and balance) on some days and pure mumble-jumble (speech and balance) on others.  I didn't envision hearing the words, "I'm just not sure what's going on. He's such a good listener, he gets it, he's a hard worker, and he's such a happy child, BUT SOMETHING'S MISSING." I certainly didn't envision that we'd possibly have another three years of therapy ahead of us. THREE MORE YEARS.

because I've been working my ass off. and it's SO frustrating.

What's crazy about all this though, is his hearing and listening skills are AMAZING! His technology is right on. He hears me as I yell for him from upstairs in the back bathroom and he's downstairs watching tv. He can repeat all his lings, each ear on it's own, from 10-12 feet away; he repeats all the phonemes pretty darn perfectly; he hears whispers, and well in noise. Receptively and cognitively - he's well ahead. He gets it.

I started writing this yesterday, as a "whoa-is-me-andmybaby" post. It's bittersweet hearing about other {amazing} kids implanted around the same time as {my also amazing} Aiden, speaking circles around him, graduated from therapy, and well caught up to their typical peers, all knowing we still have quite a road ahead. But, this is OUR JOURNEY; it is what it is, so we continue to move forward, and trust in our hearts he will get there (and he will).  Sometimes I feel I'm all over the board with Aiden. Like nothing's good enough for him. I promise you, it's not that. Yes, I am VERY particular when it comes to any of my kids and their education and success, but I believe every parent should be. But this is different. If it's not working or we're not seeing the support and fight needed to get him to where he needs to be, it's time to move on. We don't have time to "wait and see". Time is of essence at this stage and most importantly, I have to listen to my mommy gut. (and yes, I'm a bit of a control freak).

So we're making some changes.

and here's a glimpse at our new beginnings:
  • changing his AV therapist - not because we don't love his therapist (we do), but logistically, on both sides, it wasn't working, and therefore lacked consistency. We will now have a WEEKLY session via the internet with a new AVT. There are so many positive and exciting things about this! More to come.
  • changing his school - this sounds crazy, especially with his lack of language, but we're taking him out of his current oral deaf-ed program (which is 5 days a week all day) and placing him into a preschool which is 2 1/2 hours a day for four days a week. He will be the only deaf kid in his class. and it's a good thing. When I get him ready for the bus, he says, "NO mommy, new school!" He loves the new school and we've only visited twice. More to come.
  • adding in a weekly (or possibly biweekly) speech therapy through our insurance - he had a wonderful speech therapist at his current school, but he was only allotted 15 minutes a day, 3-4x a week, and usually not one-on-one. I'm also working with his awesome SLP from his IFSP (before 3yo) days, to include her on his IEP to work with him one-on-one once a week, but also as a "push-in" in the classroom with him a couple days a week (in addition to a TOD). So far, the district is very open to requests and ready to work with us to meet Aiden's needs. More to come. 
  • continue with our wonderful OT - there's so much I've learned from her about Aiden in the last eight months, and most importantly, Aiden is making HUGE strides. Six months ago, he couldn't stand on one balance bucket, now he can walk across six, WHILE TALKING! I tell her we get a free speech therapy session too when we see her. She's heaven sent and we still have quite the work ahead of us. 
  • SOLID at home one-on-one sessions - with the change of school times, I will be able to dedicate myself to him alone. It was near impossible to work with Aiden at night. He didn't get home from school until 4pm, the same time R and K got home, then as I tried to help K with her homework, keep R on track doing his, getting dinner on the table, running to all their after school activities, bath, and bed, there was VERY little (if any) one on one time with Aiden, unless it was reading him his bedtime stories. Changing schools gives back our precious one on one therapy (aka playtime). and I think it's key to moving him forward.
We also have a neurology appt set up in May, just to see if there is something we're missing and hopefully get some answers. Maybe, just maybe, it will help us better understand his EVAS or if there's something else going on and possibly help in our plan going forward. I don't know, only hope.

Three years ago, there's no way I would've thought we'd still be here, with all these therapies, still trying to figure out why some days he speaks in clear 5-6 word sentences, but others we can barely understand a word he says. Why some days he jumps down the steps, but others he needs to hold my hand to get down. I can't waste my days worrying though, I have to keep my faith and know in my heart that he will be okay and that one day it will all come together - verbally, socially, physically. We will keep on keeping on. No regrets.

oh, and by the way, there's one other thing I envisioned almost four years ago - my child walking into a mainstream kindergarten, not feeling different, fitting in right along with all the kids -

and he will. 

10 comments:

Kel said...

What exciting beginnings you have planned! I completely understand where you are coming from - Danny's third and fourth birthdays (hearing and actual) are coming up too, and like you, we are nowhere near where we hoped or expected to be...but that doesn't make either of our boys any less amazing. I can't wait to watch and read how the next year goes for Aiden!

Susannah said...

sending big hugs!!!

btw m being at a mainstream co-op two days a week has been great, and helped us focus on what her needs are in "real life"

Herding Grasshoppers said...

Tammy, I know I've said this before... but he's lucky to have you :D You inspire me, the way you're always evaluating what's best for Aiden. Hang in there, and enjoy having more time with him!

Julie

Bill and Shelly said...

Sometimes change is good and in this case it will be the best thing for Aiden.
You are an amazing mom, all 3 of your kids are lucky to have you!
Keep at it, Aiden is doing so well.
You are right, we need to get the boys together soon.

Hunter's Mommy said...

You are an amazing mother. I envy everything you do for Aiden, and I hope to have half of your intelligence by the time Hunter is 4. You are a true inspiration. Aiden will move mountains, just wait and see!

P.E. said...

From the age of 5 to the age of 12 (7 years), I had auditory therapy (I was diagnosed as profoundly deaf and wear BTE hearing aids) where my mother would have one-on-one sessions with me almost every day. Don't think of these auditory therapy with a goal in mind to finish; think of the sessions as maintenance to ensure that your child will have all the tools to take opportunities in life.
Also, I believe that it should be 'woe-is-me-and-my-baby' but that is just a minor quibble on an excellent blog.

Anonymous said...

Tammy,

I think you are doing the right thing by taking Aiden out of full day school. I am sure they were doing their best, but they can't give the one-on-one time you can at home.

Again, from what I have seen in your blog and what I have heard, Aiden is doing wonderful.

Maggie

Lucas'Mommy said...

I can't wait to see how your journey continues. You are one stellar mama! You know your boy best! I think mainstream preschool will be terrific for him!

Ben's Mom said...

Tammy, Aiden is so lucky to have you as his mom and advocate. Your new plans sound exciting and we are sending hugs and support as you and Aiden continue on his hearing journey. You have always known what is best for him.

Jennifer said...

Tammy, you are such an amazing mom. Aiden is so lucky to have you. SOmetimes change is what is needed and you know. You have a well thought out plan and I have no doubt Aiden will go to Kindergarten just like any other kid.