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. 

Listening Room Activity of the Week

Check out THIS quick, easy to create preschool activity that The Listening Room has posted this week. (note - you'll have to sign in in order to be taken to the appropriate page I've linked to. If you haven't signed up on this site, do so TODAY! They have weekly activities, PLUS a ton of other wonderful resources to help you and your child learn to listen and speak! You can sign up here) All you need is the printout, a Pringles can, some glue, and objects that represent the pictures on the printout!

When I saw this activity, I thought it'd be a perfect way to 1) get Aiden's siblings involved in an easy to play, after school activity and 2) introduce a new activity (gotta change 'em up quite frequently or Aiden gets bored and doesn't want to "play"), yet continue to work towards the same goal of getting him to label objects with their noun name instead of just with the sound they make.

Although Aiden currently associates, and vocalizes, most of these sounds with the appropriate object, we're still struggling getting a good /oo/ and /ee/ out of him. I can say we FINALLY have the rounding of the lips and now we're just searching for the sound that goes with it! Ahhhh, one day it will come.

He's Going to School

I was beside myself with excitement yesterday as I opened up the mailbox and saw Aiden's class placement at THE RIVER SCHOOL! It feels like I just had my little monkey and now he's starting a two-day-a-week toddler program at one of the best language enriched schools around!?!? I'm truly in awe.

To make it even better, when I looked at Aiden's class list, I saw he's in class with Ben!!!! Ben's mom and I have never "officially" met, but we stay in touch through emails, discussing our boys successes and supporting each other each step of the way. We have followed each others journeys from the beginning. Ben was our hero as he was Dr. Niparko's first simultaneous bilateral cochlear implant kiddo, which helped us with our wish to do the same (Aiden was his third). When I first "met" Ben's mom over a year ago, I had no clue I'd be living so close, and better yet, that Ben and Aiden would be attending such an incredible school ... together ... in the same class! We can't wait to meet them!

The River School was founded in 1999 by a mother who wanted her deaf son to be part of a developmentally appropriate program with hearing peers. Approximately 15% of the students are deaf or hard of hearing while the remainder of the students are hearing. So Aiden will be in a classroom with hearing peers a.k.a. STRONG LANGUAGE MODELS! He will go to school two mornings a week in a theme-based environment where the children develop skills in play, socialization, and communication. This is such a fantastic opportunity to build a solid foundation for Aiden's learning to hear and speak. To top it all off, The Listening Center at Johns Hopkins has a unique relationship with the school and Aiden's surgeon sits on the school's Board of Directors! Still total awe.

There is one educator per classroom AND one speech language pathologist who works one on one with the deaf/hoh kids in the class! Aiden's class only has 8 kids, and I believe him and Ben are the only deaf kids in the class. So this is four straight hours in an oral language environment with pretty much their own private speech language therapist! On top of all this, the school also has an onsite Occupational Therapist (who could possibly help with the fact he is STILL NOT WALKING), and a full time audiologist who will work with our audiologist at Hopkins should any issues arise. The audi will have access to all of Aiden's maps (CI programs), supplies, a soundbooth, etc. so troubleshooting/mappings can happen right at the school! Aiden will also receive one additional hour of private therapy once a week after school. Pure Heaven.

I first heard of this amazing school as I followed Christian's hearing journey. At the time, we were still in Texas with no plans to even move to Maryland. Before we knew it, Aiden's daddy got a different job which relocated us to Maryland. We couldn't believe that Aiden was going to be implanted at Johns Hopkins, by Dr. Niparko, whom we wanted to do Aiden's surgery from the get go. Our thoughts when we first found JH and Dr. Niparko were, "Oh wouldn't it be nice." Well it happened. Then shortly into our journey I read about The River School from Christian's mommy, shared it with my husband, and again we imagined the possibilities, "Oh wouldn't it be nice." Well it happened again. Truly Blessed.

When we first moved up here I started attending the parent-infant class at the school and was taken aback by their whole approach in teaching deaf/hoh kids - the atmosphere throughout was thick with language development. I wanted more. The drive isn't easy (45 to 90 minutes depending on traffic). The tuition IS NOT in any way cheap (WOW!). With me not working we figured it just wasn't possible and decided to avoid any disappointments. Well, as time went on, I could not not try. I couldn't live with the "what if's" so I pushed forward. Sure enough, even though we were late to apply, they entertained the idea of Aiden attending, we went for a tour, they did a play "interview" with Aiden, and within a couple weeks we found out Aiden was accepted and that we received some financial aid!! So with the aid, some MAJOR sacrifices, and Aiden's daddy's recent promotion, we decided we had to make this SIMPLY AMAZING opportunity work for our son. Since we were late to the game though, I didn't want to jinx anything until his actual placement was in my hands. It's here. Can you tell I'm excited?

I am a very nervous momma leaving my little man, as he will turn 18 months just days after he starts school. Plus, he's not used to being away from mom; he freaks if I leave him for 5 minutes with a neighbor. Oh ya, did I mention he's STILL NOT WALKING! In the same sense, he loves being around other kids and is such a social butterfly. He's going to do great. He's going to be okay. (repeat to self 1000 times a day!)

We will continue our weekly Auditory Verbal Therapy (AVT) as we have really made some good strides this past few weeks. I am cutting back to every other week with his TOD (Teacher of the Deaf) and PT. So every other week, he will be getting four days straight of some sort of therapy. Ya, I think we'll take Friday off and make them Friday Fun Days!

Words can't describe my excitement. We have been so blessed throughout Aiden's journey! We are so thankful for all the wonderful opportunities that have been presented to us, and now this. The Lord works in mysterious ways and although we were never too excited to move to this area, He brought us here for many, many wonderful reasons. We truly are blessed ... and VERY thankful.

Now if I could just get the boy to walk before school starts!

Two Steps Forward, One Step Back

Two Steps Forward ...
I'll start with the most exciting step forward ... Aiden's saying da-da! The funniest part about it all is he'll go from screaming it to whispering it! I love it! Aiden's daddy loves it even more! Aiden is SUCH the daddy's boy, so it surprised me when he actually said mom first (more like maaaam in a poor pitiful voice). He said mom when we were in Wisconsin and when we got home he would look at his daddy and call him mom too! Hilarious! and I loved every minute of it because both of Aiden's siblings said da-da first. Well, since then, we've been working very hard on da-da and a few days ago, out it came and now that's all he says! (I've tried to capture it on video, but of course he stops saying it and just stares at me). When I tell Aiden "Da-da's coming home", he looks at the door or looks out the window for him. Hopefully we haven't lost mom for da-da!

and our second step forward ...
Well, after all of your emails, comments on my post, and phone call to Val from Cochlear Kids, I talked to both of Aiden's therapists about my concerns and I have hope we're all on the same page. After our conversations, it was agreed upon by all that we will:

• All work together and communicate weekly regarding each weeks lesson


• Continue to work on conditioned Ling responses


• Continue to work on WASP sounds (Word Associations for Syllable Perception - a project through The Listening Center at Johns Hopkins that offers an approach of learning to listen and unerstanding the connection between a sound and its meaning ... very similar to the Learning to Listen sounds)


• Add additional activity ideas to reach current goals and have homework to go home with after each session


• Incorporate a "themed" unit for each week or month (or however short/long it needs to be based on Aiden's reception). With this themed unit I discussed how I wanted to incorporate some type of calendar as yet another language tool for Aiden as well as to remind Aiden's dad, brother, and sister what we're working towards. (I was inspired by Ben's mom when I saw this, and was excited to hear Brigg's therapists developed one for their family too! Thanks for sharing Renae! I can't wait to see it!) I figure this way too, we can get books and sing songs all around this particular "theme" (whether it's farm animals, prepositions, firetrucks, a certain routine, a certain sound we're trying to reach ... whatever it may be!)

We all agreed to do a "bubble" theme to start. We'll incorporate a vocabulary list, pictures to hang around the house, books, songs, and activities. I've already found two books I'm going to check out and now I just need to find some songs. Anyone have any good websites with kid's songs/lyrics?

Thank you all for your comments, support, and advice! And for all you out there who said you're looking for ideas too, I'll continue to post on how this works, along with our theme and activities to go along with them. It's all about sharing and getting our babies to hear and speak! I have always voiced my concerns with Aiden's doctors, audiologists, etc. I don't know why I was nervous being upfront (I hate confrontation), but I found that it wasn't confrontation, they were both very open, and it needed to be done ... for my own mind, for our working relationships, but most importantly, for Aiden.

and One Step Back ...
...which I'm about to pull my hair out on! Aiden has reverted to pulling off his coils again, except now, he disects the WHOLE thing. Yep. all the way down to the battery. After searching forever to find two batteries, two coils, and two snug-fits, car rides are going to be silent again. At first he was only doing this in the car, but now he's doing it at home too. I have to keep a constant eye on him. He knows exactly what he's doing too, because he'll look right at me with that sly smile and then fight me when I try to take it from his hand. He's one strong boy.

I'm wondering if his map is off? At his last booth test (in June), they didn't have to make any adjustments to his map and felt he was good to go for six months, which was not good with me, so we agreed on three. Now I'm getting very nervous about even three months and wondering if I should get an appointment just to check. He still has been responsive, has great localization, is on and off with his lings ... Oh I wish he could tell me! I think I'll call tomorrow and schedule that appointment.