the post in which he reads

Aiden was born with a profound hearing loss in both ears; he couldn't hear a jet airplane's engines if he was sitting right next to it. My husband and I immediately dove right into what our options were for raising a deaf child. After we were told about cochlear implants, we read study after study and attended conference after conference and we learned, our son's world didn't have to be a silent one nor one with limited literacy abilities.

We learned we could choose a world of listening, speaking, and literacy for our son.

We learned, that with the proper technology (cochlear implants in Aiden's case) and services (i.e. audiology and auditory verbal therapy), Aiden's auditory centers of his brain could still be accessed, stimulated, and developed into a strong foundation for listening and speaking, and therefore, reading.

We learned quantity matters. In order to stimulate and develop these auditory centers, it was imperative that he wear the proper technology everyday, all waking hours, AND that we talk, and sing,  and point out every.little.thing we hear, and narrate every.little.thing we did, then do it all over again; continuous input to feed his auditory brain. So we did and we still do.

We learned to read, read, read - TEN books a day - yes, TEN. And it's proven very effective.

We learned (first hand) quality matters. REALLY matters (see my past posts on phonemic mapping).

"Speech perception is the only thing that really matters. That's how they learn language, that's how they gain literacy."--Jane Madell

We learned all the above not only directly impacts Aiden's listening and spoken language, but also his phonemic and phonological awareness, and overall, his literacy skills.

We learned this journey is not easy, yet very rewarding. Aiden has been hearing with cochlear implants for three and a half  years now, but it hasn't been until the last year that I can honestly say he's had a strong and stable, QUALITY, map. He still has CI mappings every three months. He also has sensory processing challenges which have presented a barrier to his spoken language, an obstacle that we're starting to break down, through the guidance of our amazing OT.

and with all we learned above, a TON of hard work, an amazing team of professionals, dedication, patience, and consistency, ladies and gentleman, I am proud to present, three and a half years hearing, my deaf son, is actually reading. Everywhere we go, he reads signs (and most of his pronunciations are phonetically correct, sometimes  a little off), and is always asking, "What that say mom?" His interest in letters making words, and words making sentences, and sentences making a story, is soaring.

Take a look at simply amazing moment #678 and add it to my "I can't believe my deaf child is______" list. (and by no means is this a book we read every night. I have read this to him a handful of times, and it's been about six or more months since we last read it - promise).

{tele}therapy: a mom's perspective

In today's busy, hustle bustle, gotta be here, gotta be there world, what is better than a mom's night-out?

At-home therapy appointments.

see Aiden and me on the screen?

Outside of changing Aiden's school this past March, we also changed his therapy program. We are still going full force with auditory verbal therapy, but in a little different way. Instead of driving nearly two hours to see our former av therapist, we decided to try out TELE-THERAPY, also known as, TELE-PRACTICE.

I want to start by saying that we love our AVT from the past two years. He will always be a huge part in Aiden's journey. The two hour drive to see him though was draining and the much needed consistency started to falter. Our therapy time was slipping. When you're traveling that far, with two older "activity busy" kids at home, AND gas prices are insane (right along with the insane copay), , AND by the time you get there your sensory seeking child is bouncing off the walls from being in the car for 2 hours AND you can barely get him to sit for another hour, much less listen and talk {WHEW}, it's time to make a change. So we did.

As I sought out options in our immediate area, I found our choices in certified auditory verbal therapists were far and few in between. I needed something close, something convenient for my WHOLE family, something that didn't stress me out each time I thought about it, and someone who was a right fit for Aiden. I wasn't finding it. There was ONE in our immediate area, who was new to the local CI center, and who already had a waiting list. And btw, I live in the suburbs of a major city in Ohio, imagine people with deaf children in rural areas. (to see how many certified AVTs in your area, go
HERE).

Then I met Todd Houston, PhD, CCC-SLP, LSLS Cert. AVT, and Associate Professor of Speech-Language Pathology at the University of Akron. After speaking with him about some of my concerns with Aiden, he introduced me to

{auditory verbal} tele-practice,

and we haven't looked back.

What is it?  

Simply put, tele-therapy, or tele-practice, is therapy via a secure internet connection from the comfort of your own home, therapist on one end, you and your child on the other through an online classroom. No major equipment is needed, outside of your computer, a webcam, and a microphone. HERE is an excellent {professional} article all about it.

mom's perspective: You don't leave your house. There are no extra gas prices, no extra hassles of packing everything up for a trip to therapy trying to make sure your child has a good lunch in them before hand AND some time to get their wiggles out before their therapy. Then finish up only to rush home for your other child to get off the bus or to take yet another child to lacrosse practice or rush to whatever "it" is, as a mom's schedule is never NOT busy.

What does a session encompass?
A few days prior to Aiden's session, I receive a very detailed lesson plan, along with other attachments created by the therapist to use in our session (bingo board, coloring page, game of some sort, etc). The lesson plan contains the different goals we're working on and an activity or two for each. Each week, as the goal stays the same (until met of course) the activities to meet that goal change. According to the lesson plan, I print off all attachments and gather all necessary materials (toys, items throughout the house, etc) needed to complete an activity. The lesson plan also contains ideas of what to say or ideas of items to use etc.

Once the therapy session starts, it's like your typical auditory verbal session, except I am the main therapist (which is what I do everyday, except now I get professional guidance, as I "perform", on how to teach my child to reach those goals). We start our session talking about Aiden's week, concerns, questions, etc then dive into the activities. Having all planned out lessons in front of me, allows me to let Aiden feel part of it all by giving him a couple activities to choose from. We complete an activity, get feedback from our therapist, then I provide Aiden two more activities from which to choose. The whole time he is engaged ... okay, most of the time he is engaged. It is a bit easier for him to stray and start talking about the dog messing with the cats, or the dump truck driving by. I actually find this beneficial, as it's conversational speech, and provides our AVT a good idea of where Aiden's spontaneous expressive speech is at. Plus, AV is all about language, so if I can get a good language lesson in on something he shows interest in, even better.

mom's perspective: I now have a binder full of planned out activities (and corresponding materials) for all his different goals and there is no more guess work when there is a lull in "what to do" in our daily at home "play" time. Oh, and the confidence gained from "being the therapist" for 60 full minutes, with true professional feedback on the other end, is pure awesomeness.

What are the benefits?

• You are wearing the therapist shoes. It's not just watching, then modeling, then taking home to do. It is all doing, which I have found is key in carrying the goals on throughout the week. This way, our AVT can see me in action for the whole session, provide tips and guidance, and then I feel that much more comfortable carrying it out everyday at home.
• The plethora of materials and activities at your fingertips is heaven! 
• You get to see how all your child's toys, and many other objects throughout your house, are EXCELLENT therapy tools and different ways to include them in daily language.
• A consistent up-to-date list of goals (which I know every parent should have at all times , but in all honesty, this doesn't happen). I can state his goals now better than I have ever been able to in the past. To me, (a little bit of a control freak), this is huge.
• Better yet, you have multiple activity ideas to go with each goal (or did I say this already?). 
• With a laptop, you can travel throughout the house (or throughout the US!). We've played grocery store (with real food from the kitchen and Aiden pushing around his shopping cart - LOVE it) in the playroom, cooked muffins in the kitchen, sat on the floor in the living room at my mom's house in WISCONSIN. It's versatile. It's changing yet consistent. It's innovative.
• TIME - I can't stress enough how much time this has saved me (along with gas!). 
• Aiden is in his natural element. He's more comfortable. In traditional therapy, he would clam up and never completely showed his true character. At home, Aiden is Aiden. He acts silly, he laughs, he jokes, and best of all, he talks and participates much, much more. 
• Other family members can join in OR I can show a recorded session to my husband at a later time so he can feel more a part of Aiden's therapy too.

mom's perspective: If you haven't figured it out yet, I LOVE IT.  And when your child enjoys it and is asking, "Tomorrow we see Dr. Todd and Kelly and Anne?", you know he loves it too ... and that's what is most important.

What are the downsides?

• Your printer ink costs increase (really I've only replaced one ink cartridge in three months). Although still A LOT cheaper than gas prices and crazy hospital copays.
• If you are the type of person who needs that face to face, touchy-feely type interactions, this may not be for you.
• It can get a little stressful on days other family (ahem, LOUD teenager) members are home or when Aiden is having an off day. What happens is I try to manage everything going on around me AND the session itself AND worry about getting in what we need to. Bottom line though, this is life. My stance this summer is going to be - if I can see you and hear you, you're joining in.

mom's perspective: there are downsides to everything, and if they outweigh the benefits, it's probably not worth going on with. You have to look at pros and cons for you and your family. Every child is different.

Aiden has honestly started to SOAR. I know there are a lot of factors that go into his recent explosion (change of school, more one-on-one time with mom, excellent OT services), but I do believe that the consistency of our weekly tele-practice sessions, have had a HUGE impact on it all. Not only from the consistency of a weekly therapy, and the consistency of having the activities to use on a day to day basis, but even more importantly - TIME .

Time is precious. The time saved from traveling to and from, is now time spent playing, talking, singing, interacting; it's time spent together. To me, this is priceless.

If you are interested in learning more about tele-therapy, you can contact Dr. Todd Houston at houston@uakron.edu. If you'd like more of a mom's perspective, feel free to contact me off line at aidensmom0317@gmail.com.

when it all starts to come together.

As I wrote a couple months ago, NEW BEGINNINGS have been in the works and all I can say is WOW. I knew in my heart a lot of these changes were what we needed to move forward. No regrets.

My son is taking off.

For example:

HIS SPEECH and LANGUAGE

• 2 MONTHS AGO: "Help you mommy!" TODAY: "Mom I need help! I can't reach my chocolate milk! Mommy help me please!
• 2 MONTHS AGO: "Kailyn soccer. Aiden park." TODAY: "Kailyn go play soccer and mommy and Aiden go play at park. I like the park mommy. Oh thank you!" 
• 2 MONTHS AGO: "I want bed mommy." (meaning he doesn't want to go to bed). TODAY: "After bath, time for bed? I don't want go bed, I stay up you and daddy." 
• 2 MONTHS AGO: "What's next?" TODAY: "After school, library and get books, then what's next?" 
• 2 MONTHS AGO: "Aiden Lucky Charms please?" TODAY: "I hungry mommy. I have Lucky Charms no milk."
• 2 MONTHS AGO: "Ow Kailyn!" TODAY: "Kailyn don't hurt my head! That hurts! owww!"
• 2 MONTHS AGO: "Aiden three year old." TODAY: "I four years old next year I five and then six. I not three no more."
• He's using phrases like - "Oh, it's so beautiful!" and "Wow! That's amazing!" and "I am so excited mom!" and "I said to hang on." (really? I must say this.)
• He's picking up on language through incidental learning left and right. He's expanding his answers to questions to include words within the question.
• When I didn't understand that he wanted me to turn the radio OFF in the car (I thought he was saying up) he overstressed the oFF saying it perfectly (he really has a hard time with this letter) and when I asked, "Why?" he answered, "BECAUSE it's too loud!"

I kid you not. His language has SKY.ROCKETED. We still have a lot of work ahead of us, but I knew it was in that cute little head of his just waiting to explode!

HIS OT
I really need to write a post about Aiden's OT. She is uber-amazing. When I think about her, I smile. When Aiden sees her, his face lights up. She has a gift. I'm going to dedicate a post all to her, but wanted to give an update here.

• Six months ago, Aiden could barely walk across 2 balance buckets, this week, he made it across all SIX (or seven?)!!!
• He's running without falling (ok, most of the time).
• He's processing multiple tasks in an a lot more seamless manner than he's done before (still a little ways to go, but the boy has made HUGE strides!)

A lot of his progress in OT transfers over to his speech. Again, need to dedicate a post about this. We're still scheduled for neurology in May, as he still has off balance days (or hours). I asked Miss A if she thought we could "graduate" soon, and she thinks we still have a bit to go. That's okay, because we'd miss her in our weekly schedule!

HIS DAY to DAY SCHEDULE

• He is sleeping in his OWN BED and going to sleep in his OWN BED at 7:30 and falls asleep on HIS OWN! This is huge. TWO MONTHS AGO: I would have to lay with him every night as he tossed and turned and didn't fall asleep until well after 9 by which time I was also out.  Then he'd be up throughout the night, 3-4 times or more. I was getting no down time at night and neither of us were getting any sleep.
• He has always been a happy go lucky kid, but I'm telling you, the kid has an extra pep in his step these days (literally, because he's learned to gallop (another HUGE milestone for him) and he does it everywhere we go).
• He is eating better. I know kids go through stages, but it seemed like his appetite came back the same time all these changes happened. 
• Him and I get the whole afternoon together - to be silly, play hide-n-seek or go-fish or legos (or work on those pesky /f/ words), or dance, or go to the park, or even just sit back and watch a movie together. It's amazing having this time back with him. I LOVE our alone time together. Seriously, PRICELESS.

He's coming out of his shell and showing us what he has. It's all coming together. I attribute a lot of this to being around HEARING peers (good language models), an amazing new teacher, his wonderful OT, and a new weekly AV tele-therapy program with the amazing Dr. Todd Houston and his grad students through the University of Akron (more to come on this too) ... 

OH, and he's FOUR ... and everything seems to change at FOUR. {SMILE}.

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. 

Ten on Tuesday

1. Tomorrow we start another new AVT (auditory verbal therapy) adventure. We will still see Dr. Don every 2-3 months, but due to not being able to see him weekly (he's 2 hours away and if you haven't noticed, gas prices are CrAzY - especially with a SUV), we are starting weekly teleconferencing sessions with a new AVT and tomorrow we're heading to Akron so Aiden can meet his new friend and get everything set up. As Aiden said tonight, "It not Dr. Don." No buddy, not Dr. Don, but I'm sure it'll still be a lot of fun!

2. I am very excited to get this going. There is something about weekly sessions. I thought that once to twice a month would be okay, but there truly is something about the whole accountability thing. I'm really hoping the teleconferencing thing works for us, because between all of our kid's crazy schedules, this seems to fit in so much better.

3. To prepare for tomorrow's session with our new AVT, I made up a packet of information on Aiden, similar to the booklet I put together for our first IEP. I added in recent language samples, a chart of past language test scores, and all of his most recent evaluations (mainly from JTC). 

4. As I went through Aiden's audiograms and made copies, I couldn't believe how much he has fluctuated from map to map. At one point last year, he tested at 65 in the low frequencies! That's insane. His maps have had such huge fluctuations in the past two years, it's no wonder my baby is still behind expressively. We have had a pretty stable map about nine to twelve months now, but still not consistently at 20-25db across all frequencies as I'd like to see. He still drops to 35-40db here and there, hence the reason of seeing our audiologist every three months. 

5. He is still making good strides this year in all areas, but he definitely still has his off days. There are some days where he consistently loses his balance and those same days I can barely understand a word he says. Something's missing and I just can't put my finger on it. I voiced my concerns with his PT, SLP, and OT and all three of them agreed with me and suggested he be seen by a neurologist, "just to see and rule everything out" to make sure nothing else is going on. They all see both sides of him. So the referral was sent in and the appt made - for MAY. wow.

6. Do any of you/your children have a map with a higher pulse width? I don't fully understand it, but at Aiden's last mapping appointment (in December), a wider pulse width was needed to obtain NRTs on his right ear (which we've always had trouble getting NRTs on). His audiologist then proceeded to create and try out a new map with this slight increase in pulse width (increased to 37). As she adjusted it, Aiden was fine, but by the end he was burying his head in my chest and not liking it what-so-ever. We immediately turned it off and went back to square one (pulse width of 25) and adjusted based on phoneme repetition. Just curious. We go back next month for booth testing.

7. I LOVE this picture of my silly boy.

8. I CHERISH our "therapy Thursdays" together. We start out with an OT session and then the rest of the day is just ours. I really need to blog his OT sessions (and AMAZING therapist) - I have so much to share. We have noticed though that when he comes in with "slush mouth" (jumbled speech), within fifteen minutes of heavy work, he's speaking a lot crisper. He LOVES his OT and is quite the performer for her!

9. Took this picture of a beautiful sunrise the other morning from K's bedroom window. Bliss.

  

10. that's it. hope you enjoy your week. i will. i get two days with my boy ... tomorrow and thursday! As Aiden says, "No school tomorrow. Stay home mommy!" Ya buddy!!! i.love.it!

Wednesday Workout - Aiden's Experience Book

The experience book introduced to us by our AVT is not quite the same as the ones I've read about or made in the past. It is not one book on one subject, but a big binder full of daily experiences and lessons we're working on. Aiden's AVT started this with us and we not only use it at home, but also in therapy. It is a wonderful tool to help facilitate conversational speech, story telling, and it is a great means to building a strong literacy foundation. (oh, and it can serve as a great scrapbook for mom too!)

The ultimate goal is to get Aiden used to, and excited about, bringing his "story book" to therapy to tell Dr. Don all about an experience from that week. Kids are typically more excited and more apt to talk about something they've experienced, know, and understand. Depending on how long we're in AVT, once Aiden gets to an age where he can draw his own pictures, he will, or tell me about an experience in his day that he wants to add to his book.

Creating one page a day can be overwhelming, so Dr. Don and I decided to make one personal experience page a week and one learning/theme page a week. Before I make the page, Aiden and I always talk about the topic first then make the page together.

Situations we currently incorporate into Aiden's book include:

Emotional Experiences

(Today he fell off his sister's bunk bed, so I need to make a page on that for this week. This is when I cut my thumb and Aiden was upset about it).

Special Days

(birthdays, holidays, grandma visiting, etc.)

Fun, Interesting Daily Type Events

(we make warm cookies a few times a week for bedtime snack)

Changes in Aiden's Life

(for example, I'm in the process of making a few pages about starting preschool. Here's one I made to help Aiden understand why Ryan and Kailyn left everyday when school started up)

Future Events

(for example, we're heading to the beach for Spring Break, so I'll make pages on packing luggage, riding in the car, pictures of the beach etc)

Social and Hygiene Skills

(for awhile, he was constantly eating his boogers - ewww!)

Themes/Specific Lessons

At Aiden's age, a lot of our pages are based on themes/learning experiences (colors, letters, bears, sequencing, holiday vocab., or whatever the "theme of the week" may be.

As you can see from our example pages, it doesn't have to be hard and time consuming.

Some things I do to create these pages with ease:

• Use clip art, printable from websites, and magazine pictures. I'm no artist, so if I don't have a picture readily available of Aiden performing the task we're talking about, I find it on the Internet or in a magazine then I ....
• Draw stick figures with a picture of one of our faces for the head. You can find great online photo print specials. I pick a few pictures of the family with good head shots then print tons of them so I can cut out our heads and use them throughout the book.
• Use cardstock for the pages, it's much sturdier. Oh, and I make sure the experience we're talking about is on facing pages (so I use the front and back of each sheet), like we're opening a book and don't have to flip the page as we talk about it.
• Use descriptive words, vocabulary you want them to learn, coloring book pages, and printables to help with themes
• Keep and use items that represent an experience and gives the story an even more personal meaning, i.e. movie ticket stub, postcard from a place visited, wrapping paper, a card received, picture from the package used (ex. picture from the brownie box), invitation, etc.

Items I Keep on Hand

(I keep all my supplies in two shoe boxes, so when we sit down to make a page, I have all my necessary supplies in one spot).

• stickers and/or specialty paper (this is an easy way to make a quick page to talk about holidays, animals, etc)
• ziplock baggies (to hold pieces for some pages - for example, we made a snowman on one page and I would have Aiden dress up the snowman with different color scarves, mittens, hats that I cut out for it, so I stored all the snowman's clothes in the baggie.)
• Crayons, markers, sharpies, glue, hole punch, stapler, tape, scissors
• Laminator (great investment)
• any misc. items collected to use one day -i.e. bubble wrap, magazine clippings, clearance holiday items to use for the next year)

There are a lot of great websites, but some I enjoy for themed units are:

• dltk-kids (a non-member site with tons of preschool activities, holiday crafts, and printables)
• Daycare Resource (a member site, but they do have some free printables)
• Making Friends.com (non-member site, many printables for paper dolls)
• Preschool Printables (non-member site with tons of fun games, ideas)
• Hubbard's Cupboard (non-member site with good lesson plans and printables for different preschool themed units)

Searching for Some Guidance

As parents of deaf and hoh kiddos know, appointments can be very overwhelming and feel as if there is no end in sight. In the beginning it felt like we had an appointment nearly everyday for months on out. They settled down as time went on and then WHAM - we were slapped back into reality as we went to nonstop activation and mapping appointments, not to mention the therapies in between. Then the storm calmed and appointments became fewer again.

I feel we're back in the storm again.

Aiden's list of therapies/appointments to date include:

• Physical Therapy - After a recent evaluation, Aiden is still significantly below average in stationary/balance skills and locomotion skills. He has low muscle tone (which I would never guess trying to pry him off something or take something away from him - the boy is strong!) We have a PT come to our home every other week.
• Auditory Verbal Therapy - Every other week we drive 2 hours to see Dr. Don. I know crazy, but we LOVE this therapist and we get to visit family all at the same time.
• Regional Infant Hearing Program therapist - once a month and LOVE her too. We do a lot of learning to listen activities that go hand in hand with our AVT. This is at the same school that houses the oral preschool program for the deaf/hoh that Aiden will most likely attend.
• Music Therapy - We just changed this from weekly to every other week, she comes to our house, and it's a TON of FUN.
• Occupational Therapy for sensory issues/vestibular/balance. We just left one practice due to lack of "warm and fuzzies" for this therapist. When you don't feel like you're learning anything to help your child and dread going to therapy, it's time to move on.
• Audiology appointments - We have these once every two to three months ... we're still trying to get Aiden's maps back on track. We're getting there, but I'm still seeing issues with his responses to the low frequencies in his right ear - we're heading back to Cinci in a few days.
• Little Gym - YAY! We love Little Gym! It's a FUN class to help with balance and low muscle tone, but even more importantly, to be around other kids his age and have some fun!

Then of course, we have the most important therapy, and that's our everyday language rich experiences that have become part of our everyday normal.

(These are the reasons I stay home. If I got paid for all the different "hats" I wear, I'd be making much more than I ever did in the working world.)

To top it all off, we are considering putting him into a more "traditional" speech therapy (in addition to his auditory verbal therapy). This would offset the weeks Aiden doesn't have AVT. She works with our county and comes highly recommended as working with a wide array of special needs children and helping them learn to speak. She also specializes in working with kids who have low muscle tone and sensory issues. Although our team believes Aiden is doing well and is a very bright two year old, there is a consensus that his low muscle tone and sensory seeking ways may be affecting his speech production. (after taking into consideration the fact that he's deaf of course).

We had an evaluation with this therapist, Miss Cheryl, last Friday. She is married to a deaf man who was implanted years ago, but never quite adapted to it, so no longer uses it. She has a child with vestibular and sensory issues similar to Aiden's. She likes to use sign as a bridge to spoken language. We informed her we are not against sign, but use it VERY little. We like her. We like even more her office is only FIVE minutes from our house. I worry about having yet another speech therapy, but more so, one that is to a different beat than what we're used to in AVT.

We are also questioning finding another OT who specializes in sensory integration (SI). We did have Aiden reevaluated through our hearing program's OT (we never completely understood Aiden's OT issues until this point). The results showed Aiden's grasping and visual motor skills on target, yet there are vestibular issues (due to his EVAS) which he is most likely compensating for relying on vision. The sensory profile results suggested that there are issues with auditory processing (of course) and oral processing (hyporesponsive meaning it takes more input than normal to register). Aiden is a sensory seeker and low registration child (meaning again, Aiden requires a significant amount of input in order to produce an appropriate response). These children are very active and are continually engaged within their environment. Aiden gets overstimulated in an environment with a significant amount of visual input, since it is this system that he relies on to overcompensate for his vestibular issues. The OT recommended 1) at home activities to focus on enhancing his other sensory systems (besides vision) to learn to compensate for vestibular deficits, 2) continue PT, and 3) seek a speech therapist regarding oral motor processing due to sensory results.

So what to do. This would add in two more appointments into our already busy schedule. We DON'T want to overindulge Aiden in therapies. We DON'T want his toddler days to be sitting in a therapy chair or playing in a therapy room. We DON'T want to look back and remember him being more in therapy than playing with friends. Yet in the same breath ...

We DO want our baby to learn to compensate for the dizziness/balance problems he may have for the rest of his life.

We DO want our baby to run and keep up with his friends, something that today, is very hard for him.

We DO want our baby to hear and to speak in a way that you'd never know he had a hearing loss.

We DO want our baby to be mainstreamed by kindergarten.

We DO want to build a strong foundation for Aiden in which to build upon by providing enriching life experiences. To build this, we believe it does take a village. It's this village that helps Aiden's daddy and I understand how to make sure the foundation is solid and how to continue to move forward, building up and branching out

We DO want our baby to feel successful in an already hard world.

We know all this is possible. We know all this takes a lot of hard work. We know we need to work hard with him now, to make it easier later.

We'll figure it out and I'm seeking guidance from the true professionals who have been there done that to help us.

For those of you whose child has vestibular and/or sensory issues:

• Did you find that occupational therapy helped these areas?
• Are there any books that you found most helpful in helping you help your child?
• Did you find that these areas were affecting your child's speech progression and if so, what helped?

For those whose child sees a "traditional" speech therapist (in addition to another type of oral/auditory therapy or alone):

• What ways do you see this benefits your child?
• Do you work more on pronunciation and articulation?
• If you've seen an AVT as well, do you see the two therapies as completely different? Do you find they complement each other?
• If seeing more than one speech therapist - how do you manage them together? Do you ask that the lessons be similar or let each therapist do their own thing and work on something different?

Any feedback, thoughts, words of wisdom are greatly appreciated, even outside the questions I may not know to ask.

I have to say too, we don't spend our days constantly worried about Aiden. We are happy with his progress, yet concerned in the same breath. He's trucking right along with some bumps and bends in his path. We want to make sure he has the right means to a successful end. He has more "opportunities" (thank you Ethan's mom, I like using this word better than others) than hearing loss, and understanding and balancing them all can be quite the task. Sometimes I feel like I could work for the circus (especially when you add in Aiden's siblings which could be a whole other blog all in itself). Seriously. ; - )

By Golly I Think He's Getting It

Yesterday Aiden and I left early morning on our trek to Cleveland for his first therapy session with our new auditory verbal therapist (AVT) Dr. Don. His appointment wasn't until 3pm, so we stopped and visited with Aiden's awesome aunt (and God mother) so he could eat lunch, get his energy out, and nap all in hopes of this session going much better than the crazed boy he was at our meet and greet a month ago.

Let me just say, either there was some other little boy in the chair or this man is AMAZING. and I have to say, I'm pretty sure it was Aiden sitting there. Our whole session was like an out of this world roller coaster ride with twists and turns, not knowing what was coming next, and full of excitement. Here's a snippet from it all.

There's no punctuation in this description for a reason ...

As soon as we walked in the room it all started

plastic rings turn on the table Dr. Don belts out the lings

Aiden puts the rings on as

Dr. Don takes it a step up and prompts Aiden with much excitement

to repeat the lings and Aiden does

each.and.every.one

his /s/and /sh/ were simply amazing

his /m/ and /oo/ were still closed mouth

yet he was so proud of himself

and could tell he was having fun showing off

The excitement continues

The room's in uproar full of

motion and we're off to the next activity

Here come the animals and old MacDonald and

for as much as Aiden will not play this activity with me at home

he loved every minute of it because this man

is so animated with every little thing he says and does

Animals are going here and there and Aiden

attempts to repeat all the sounds and

"SHAKE SHAKE SHAKE" them in the silo, and

"OH NO, where did the cow go? The silo's empty?" and

"OH, the pig SNORTS and OINKS and the sheep's SO SOFT"

and we got through the whole song with so much more

than just animal sounds and E-I-E-I-O's

THEN before you know it

"The wheels on the bus go round and round..."

and the people go "in and out" and one gets stuck so

"BANG BANG BANG! (the bus on the table), they're STUCK"

and the baby's crying and even

Aiden made the baby cry "WAHHHH"

(first /w/ I've ever heard)

and the mom says "shhhhh" oh so softly

(and so did Aiden)

and each and every word Dr. Don emphasized,

"Aiden, help me say it, SHUT"

and sure enough, this little show off

helped him say it ... or at least tried!

After the bus we sorted pictures of airplanes and cows

(btw, this is an activity from The Listening Room)

and after a round of modeling

Aiden wanted to do the rest all by himself and

put all the cows on the farm (each with a "mmmm")

and all the planes at the airport (each with an "ahhh)

(I tried sorting with him just the other day and it went nowhere)

and when Aiden was done with an activity

he'd hand it to Dr. Don and say "all done" clear as day

and before I knew it over an hour had gone by and

seeing my little monkey happily engaged

for more than TEN minutes and perform the way he did.

WOW.

In between all this nonstop excitement, there were pauses of silence, times to "STOP" and discover, different alarm clocks ringing (to check Aiden's detection and localization). A good hour of solid, yet FUN language immersion and Aiden was like a little sponge the whole time saying words I thought were lost in Never Never Land.

What may seem overwhelming to some, was PERFECT for Aiden. Being the crazed monkey he was our first session set the stage for what AIDEN NEEDS for a successful therapy session. For a therapist to pick up on this and hold Aiden's attention that long AND get that much language out of him, I gotta say,

I think we've finally found our right match.

and it feels GREAT!

Oh Wonderful Listening Day!

We are really loving our new parent/infant educator, provided to us through Ohio's Regional Infant Hearing Program. Unfortunately, she is one of two people who services well over 80 families in this area and therefore only get to see her for one hour each month. Yesterday was our second time to see her, but really our first true therapy session. Even though Aiden was slightly under the weather, he performed beautifully. He responds very well to Miss N. and I can tell he really likes her.

She started with testing the lings and Aiden responded each time by holding the chip up to his ear, listening, and then dropping the chip into the empty diaper wipes case (great idea for reuse). Holy crap. We just may have this conditioned response thing down. I can only hope it carries over to the soundbooth in a couple weeks when we go back for another mapping.

After reviewing our previous month's activities (eating, sleeping, and going down the slide) with Aiden, she brought each item out (the Little People, the bed, the table, and the slide) and would say, "Oh, the boy is hungry. He wants to sit down and eat" or "Yawn, the boy is tired. He needs to go to bed." Sure enough, for the most part, Aiden performed each scenario correctly. He's getting it. He's not repeating much, but by golly, he's taking it all in, and he's getting it! He even gave us a couple spontaneous "bowwwn" (down) as he slid the boy down the slide (in which we always say "wheeee", but in which he refuses to say - grrrr).

The highlight of the day was a sound discrimination activity using musical instruments. We have never done this with Aiden before and both Miss N. and I were amazed at how quickly he caught on. She started by bringing out two cow bells, talked about them ("one for YOU and one for ME", "look, they're the SAME", "LISTEN to the sound they make"), they'd play them together, and she'd say, "Okay STOP! *pause for silence* Now, put the bell down." Then put hers away, out of sight, but left Aiden's in front of him. Next she brought out some wooden sticks, then shakers and repeated above.

After introducing each instrument and its sound to Aiden, she went behind a chalkboard with her set of instruments, while all three of his were still in front of him. She would then play one of the instruments, without showing him, and prompt Aiden to identify the instrument by picking up the his instrument making the same noise. The first couple times around, she had to play the sound, show him which instrument the sound was coming from, then I'd guide him to pick his up and play it all while talking about how the sounds were the same.

He quickly picked up on this game. By the third round, my little monkey was LISTENING to each instrument sound (and pointing at his ear when he heard it) without seeing the object, was DETECTING what the sound was, then was IDENTIFYING and choosing the instrument to reproduce the same sound he just HEARD!

Another SIMPLY AMAZING moment on our journey to help Aiden hear.

Busy Bees

Since we've moved I have been busy making the new house our home, but just as important, getting my kids settled and acclimated to their new life here in Ohio. Both of Aiden's older siblings are so well adjusted and I couldn't be prouder of them. Of course, neither of them wanted to leave their friends in Maryland, but once we hit the road, they didn't say much else about it. Since we've been here, there's been nothing but happy faces (well, for the most part anyway)! They both love their new school and came home the first day excited to go back. I too, was very impressed with the schools, as they're much smaller and I could tell just walking in them that my child wasn't just a number.

Ryan is easy. Get him signed up for school, talk with the counselor on how he needs to be placed in advanced classes, but watched closely because he has "bright but lazy" syndrome, get him signed up for spring baseball, take him out to explore the woods, set up his XBox 360 and stereo and he's ready to go.

Kailyn too, lead her to friends to play with and she's happy as can be. Her school called me immediately to set up a meeting to discuss her 504 plan. They had the school psychologist there along with everyone else and we discussed my concerns about her having a possible auditory processing disorder (which, like hearing loss, can mimic ADD/ADHD). They tested her that next week and we're just waiting on results. I also told them about Aiden having LVAS and how Kailyn tested at 40db at one point (which ended up being due to fluid) so the speech pathologist set up for her hearing to be tested every couple of months. They devised their own success plan for her, on top of the IEP, and she's been doing wonderfully! I'm in the process now of finding her a good gymnastics class and Girl Scouts troop.

Then there's Aiden. I'm shouting out a HUGE THANK YOU to Drew's mom and Allison's mom for leading me in the right direction way before we even moved here. They led me to the "good" counties and steered me clear of the ones we wouldn't want to be in. They sent me audiologist names, preschools to check out, the low down on therapists etc. I couldn't have asked for any better "relocation specialists"! And boy were they right. This county provides an Early Intervention (EI) program like I've never seen before. Until Aiden reaches the age of three, he will be provided services through Ohio's Help Me Grow program, our county's EI program, and the Columbus Hearing Impaired Program (C.H.I.P.). There's so much to get a hold of, and I don't completely understand it all yet, but here's the low down of what I get so far.

The EI program through the county has MANY opportunities for us to make good use of our tax dollars. Aiden has been qualified to receive Occupational Therapy, Physical Therapy, and of course, speech therapy. The wonderful thing about this program is they contract out with companies or individuals who provide these therapies within the communities. This means I get to choose who Aiden sees and if for some reason I don't have warm and fuzzies about it, I can choose someplace else. There's also the option of having someone come into my home OR going to an actual location. I love this because I'd rather bring Aiden to sessions where he can "play" on all the fun equipment, which gets him engaged at such a higher level. This is outside of any private services I choose to pay for through our insurance.

In addition to our therapies, the program also provides us with an additional budget dollars to use towards "other" activities that would benefit Aiden. For example, I could use these funds for a swimming or gymnastics class, music therapy, additional therapy sessions, playgroups, etc. I believe I also get funding to help pay for CI equipment, hearing loss conferences etc. I'm in awe. Every county should have this. We are checking out a music therapy class next week with We Joy Sing.

The CHIP program is a part of the Columbus Public School District, but provides services for over 35 districts, servicing over 200 hard of hearing or deaf children ages 0 to 21. Through this program we are provided a teacher of the deaf (TOD). We met with our new TOD for the first time this week and I was just amazed. She had Aiden laughing and immersed in language within the first five minutes. We spent a whole two hours with her getting to know each other and learning each other's expectations. We only get to see her once a month, but she will always send home a couple pages of homework and activities to go along with it! You know I absolutely LOVE THIS! This program also hosts a toddler play group once a week where the parent(s) meet in one room and the toddlers play and do activities in another for a whole hour and a half.

Being an auditory verbal family, Aiden's daddy and I knew from the get go we wanted a strong auditory verbal therapist (AVT). I called our wonderful AVT from Texas, Miss Becky, to help us out with referrals. She got us in touch with a well respected AV therapist (and former audiologist) from the Cleveland Clinic whom we are VERY excited to see. He too had Aiden laughing within minutes of stepping foot in the door. Even though it's about a two hour drive, I know it will be well worth it and more than anything, get us back on track. We will see him two times a month.

After leaving The River School, my biggest worry has been Aiden not having the social interactions with hearing and deaf peers. His hearing peers at the school were huge language models and he was starting to thrive in a classroom environment - away from mom's side. He was over the whole separation anxiety and even started saying his CI buddy Ben's name. I believe kids learn best from their peers (oh, and the pretty much private SLP he had in the class was a huge bonus too) and leaving this school was the one thing I hated leaving behind. But I'm finding out with the resources here, we'll be able to fill this void without breaking our budget.

I have also scheduled our first audiology appointment AND our first appointment to meet the CI surgeon/ENT in this area. The audiologist we're going to see has come very highly recommended from Drew's mom, our audiologist at Hopkins, and my amazing SIL, who is a TOD here in Ohio.

So our schedule is filling up fast. He'll have OT or PT one time a week (rotating between the two), we'll have a toddler play group once a week, music therapy once a week, and the funny thing is, we'll only have outside auditory therapy three times a month ... well, that doesn't include all the "play" time with mom at home everyday!

Auditory-Verbal Goals as of August 2009

About a month ago we started creating themed units to go along with Aiden's therapy. Along with the theme, his therapists and I choose:

a handful of books to go along with the themed unit

key vocabulary words

two or three songs or nursery rhymes to work on, whether or not they go along with the theme

two or three key functional word phrases (i.e. "All done!" or "Blow (mommy) a kiss!")

This has really helped me stay focused and not feel so overwhelmed with trying to fit it ALL in, and best of all, we are seeing some great responses from Aiden!

I plan on posting our themed unit plans every couple of weeks (and will post our past two in separate posts), as I just LOVE how this community of deaf/hoh moms and dads share in a common goal -to help our children learn to listen and speak. There are some who do not have easily accessible resources and I hope that this is helpful. PLUS, in the same sense, I would LOVE feedback on our plans, including ideas for additional activities, songs, and/or books. These themes will be consistently revisited and the more ideas to work with, the better.

Before I start posting our themed units, I wanted to document, for Aiden's Journey, his current Auditory Verbal Therapy (AVT) goals, which we also work on week after week. These goals do not change until Aiden has them mastered on a continuous basis.

AIDEN'S CURRENT GOALS

AUDITORY HIERARCHY LEVEL

1. Demonstrate a conditioned response to Lings (mastered August 2009 by pointing to his ear whenever a Ling is voiced)

2. Consistently turn to his name (mastered end of July 2009)

3. Respond to requests to imitate words using a hand cue

For example, I hold my hand up to my mouth and voice the /ah/ sound, then place my hand by his mouth and say "Your turn!" Aiden will imitate /m/, /ah/ at this point.

4. Participate in rhymes/finger plays
Since we started focusing on particular songs each week, Aiden will use the correct hand motions for two to three songs based through listening alone. We will continue to work on new songs/nursery rhymes each week.

RECEPTIVE LANGUAGE (Cognition)

1. Recognizes common sounds (e.g. "brrr" for car)

2. Understands up to 20 words

3. Follows one-step commands in routines (i.e. "wash the baby", "Give (mommy) the (spoon)."

I am currently documenting the WASP sounds he recognizes and how many words he understands through listening alone. Aiden is progressing with one step commands, especially since we've started our themed units. For example, Aiden will blow kisses (from our bubble unit), wash the baby, and point to face parts (from our bathtime/body parts unit) when asked to do so without any visual cues.

EXPRESSIVE LANGUAGE

1. Develop an auditory feedback loop by imitating combinations after an auditory-only model (i.e. WASP program which is similar to the learning to listen sounds)

Aiden imitates the airplane (ah), car (brrr), and ice cream (mmm), when he sees the object or picture.

2. Approximate any 1 - 10 high frequncy words in context (e.g. more, up, hi, all done, go)
Aiden's current expressive spoken vocabulary that he uses in context includes:

ahhhh (airplane) - 6/09

maa (more) - beg. 7/09

maaam or ma-ma (mom) - beg. 7/09

da-da or dahd (dad) - end of 7/09

uh-uh (up) - beg. 8/09 (not consistently)

ah da (all done) - beg. 8/09

on (for on, in, and down) - mid. 8/09

buh-buh (bye-bye) - mid. 8/09 (not consistently)

um-um (yum-yum) - mid 8/09

malm (milk) - end 8/09

3. Use jargon (words mixed with sentence intonation)

4. Speech Babble CVCV (consonant-vowel-consonent-vowel)
For example, we use a peg board and pegs to help accomplish this and demonstrate turn taking. I start with a peg up to my mouth and voice, ba-ba-ba, then pass the peg to (dad) who voices the same, ba-ba-ba, who then passes the peg to Aiden who will hopefully imitate the action and sound and then place the peg in the board. We continue on with different vowels (bo-bo-bo or bu-bu-bu etc.) trying to get Aiden to imitate each one. The other day Aiden started this on his own, voicing da-da-da into a cup then passing the cup onto me. He still doesn't imitate much, but we're working on it.

Aiden's Learning to Listen Workboard and Calendar

About a month ago, I saw this calendar from Ben's mom and this family workboard idea from Brigg's mom, and immediately knew I needed something similar. I wanted something that my family and I could look at as reminders of what we needed to do to help Aiden achieve his current goals. I wanted to create a sense of responsibility (I am a HUGE list maker type of person) not only for myself, but for the entire family. We had strayed from reading Aiden his 10 books a day plus I felt a big burden on my shoulders (especially since I stay home with him and am his main "therapist"), to get it all done by myself.

This is the family workboard I created and have hanging in the kitchen. I'm lacking in the creative department ... nothing too pretty, but quick, easy, and cheap.

Sorry it's sort of hard to see (not sure what's going on with my camera lately) but here's what it entails:

• Poster board and four foam backgrounds with self adhesive backs, foam shapes used as note holders, velcro strips, paperclips, markers, and cardstock.
  
• The top left is a reminder to practice the Lings. I glued on twelve velcro strips to the foam ... six on top and six on bottom and then a velcro strip onto six pieces of cut out cardstock with a Ling written on each. If they're moved to the bottom, we know that Aiden responded to all six that day. If not, we know which Ling to recheck throughout the day. Once I get my printer working I'll print out a picture representing the Ling and then laminate to help it last longer.
  
• The top right is a copy of the WASP sounds (learning to listen sounds) with the appropriate object representing the sound. I have about four pages of sounds we're working on, so I just rotate between the pages each few days.


• The bottom left contains our theme for the week. I glued five foam stars onto the foam background, then I use cardstock (or index cards) to write the theme we're working on, some key vocabulary words to use, activity ideas, a song we may be working on, and the key phrase(s) we're working on. I use a paperclip to clip them onto the stars so I can change them out easily each week. Again, once I get my printer fixed I'd like to put laminated pictures up with the key phrase or vocabulary words it pertains to. This way, I can reuse the cards for other themes or when we revisit a particular theme.

• The bottom right provides everyone with a reminder to READ, READ, READ to Aiden! In the beginning, we all shared in this. Aiden's daddy and I read 3 books each to him and his brother and sister read 2. But we've all slipped and need to get back to 10 a day. I have a basket that contains books related to whatever theme we're working on, which everyone is to read at least one of these books and then can choose any of the others.

Each time we start a new theme, I sit down with the family and review the activities and vocabulary we're working on. This way we all feel a part of Aiden's progress. His brother and sister play such a HUGE role in Aiden's journey and they don't even realize it. Aiden absolutely LOVES them and is very receptive to any play time he gets with them.

The other thing I did to help keep myself planned and organized is start a weekly calendar for all to see. I loved this calendar Nolan's mom created, but knew I had no art skills and wasn't about to try and cut out all kinds of shapes (seriously ... you should see the sheep on this week's calendar - very scary indeed). I also loved Ben's mom's calendar, but I needed something smaller showing just a week at a time. So when I found a dry erase weekly calendar board at Target, I knew it was for us. In fact I love it so much, I went back and bought another one to keep track of Aiden's siblings activities. I plan out our week on Sunday night and talk with Aiden each morning about our main activity for the day. I also took pictures of his therapists to hang in photo magnets, which I place on the day we see them.

Aiden loves our family workboard so much that I'm going to take Leah's calendar idea and make it into a felt activity board. This is another fun interactive way to practice his learning to listen sounds (using printed pictures glued onto felt), sing songs, or tell a story! Oh, and I just saw this calendar idea from Tayten's mom, which is another great idea as Aiden gets a little older. What's great, is that with all these different ideas, I know I can easily change up what I'm doing as Aiden gets older.

Do you have a calendar/activity board you use? If so, I'd love to hear about it!

I Heard That!

One of the very first things I learned from the wonderful Miss Helen (the very first AV therapist I met with after finding out about Aiden's deafness) was to point to my ear whenever I heard something, in order to condition Aiden to do the same. She taught me that when Aiden was with me and we heard any sound what-so-ever, I was to point to my ear and say in a very excited manner, "I HEARD THAT! I HEARD THE PHONE RING (or whatever it was I heard)!"

So I did. Everywhere. Everytime. And by the time Aiden was 8 months old, he too would sometimes point to his ear as if telling me or his audiologist, "I heard that!" (and I catch myself doing this ALL THE TIME with the hearing kids in my neighborhood!)

Another time we use the whole pointing to the ear is when we're practicing the Ling Six Sound Check, which is a way to determine a cochlear implant's effectiveness. These six sounds (ah, oo, ee, sh, s, mm) indicate a child's ability to detect all aspects of speech. If Aiden is not consistently responding to one or more of these sounds, he may not be hearing across the range of frequencies, and therefore missing out on important sounds. This indicates to us that something is wrong with his mapping (programming) and an audiologist appointment is needed. Therefore, it is critical we practice the Lings everyday. In fact, I practice it with both of Aiden's implants on in the morning, and then again after his bath, at which time I rotate every other night between the left and right CI, to check each ear on it's own.

Since Aiden still cannot tell us verbally whether or not he hears these sounds, we have been conditioning him in other ways to show us he hears them. One, as mentioned above, is to point to his ear. After I voice a ling sound and Aiden shows some behavioral response, I point to my ear and say very ecstatically, "I HEARD THAT! (then repeat the Ling)". We have also been conditioning him to perform a certain action when he hears one of the Lings (such as drop a block into a bucket or put a stacking ring on its base). The ultimate goal is to get Aiden to imitate each sound when he hears it, but right now he will only imitate /m/, /ah/, and sometimes /oo/, but not very seldom.

Well ... all this explanation to preface the fact that AIDEN IS FINALLY POINTING TO HIS EAR WHEN HE HEARS THE LINGS!!!! He has always pointed to his ear when hearing an airplane or mowers outside or daddy coming home or the cats meows etc., but never to any of the lings! We have always relied on behavioral responses or the little bit of imitation he gives us.

In this video I do not point to my ear until he points to his, to reinforce his actions. I also cover my mouth the whole time (even when I'm not voicing any sound) so I know he's actually hearing me and not seeing me talk. You will also see his favorite sound to make is still "mmmm"!

(Make sure to turn off the music to the left before playing.)



Another thing I've been doing with Aiden the last couple of weeks is to ask him if he wants milk or juice as I point to each in the fridge. The last couple of days we've been getting some variation of "milk" (sounds like "malm" to me) and when he wants juice, well, he says his favorite "mmmmmm" sound and points to it.

Looking for Guidance on "This"

I've been debating sometime on whether or not to write about "this", but after having many sleepless nights thinking about "this", I thought who to better get advice from than the moms and dads who are there or who have been there. I've thought and thought about ways to say "this", ways to discuss "this" without sounding offensive to anyone on Aiden's team. We genuinely like our therapists and truly believe they have the same long term goal for Aiden as we do. It's a long journey to reach that ultimate goal, and I, as Aiden's main therapist, need to make sure we, along with Aiden's therapists, are a right fit as a team to reach all our goals ... for Aiden's sake.

I want to also say that we do believe Aiden is progressing along wonderfully. So this isn't about "our son not keeping up with the Jones'" type of post. I whole heartily believe that every child (hearing or not) is different and will get where they need to be when they're ready to get there with the right guidance. Would I like Aiden to be chattering more like others his age? Of course. But I know Aiden is Aiden and we are VERY happy with his progress.

What "this" comes down to is we don't feel we're getting the level of service we're used to when it comes to Aiden's therapy. Just some of the things I've debated and questioned over and over in my mind:

"Are we getting what is typical of Auditory Verbal Therapy and TOD services?"
"Should there be different kinds of homework after each of our sessions?"
"Should we be learning new activities week to week to take home and work with Aiden on?"
"Should our TOD (who is very supportive of our AV approach) and our AVT be in weekly or monthly contact to discuss Aiden's progress/lack of progress to help plan the next weeks/months therapy sessions?"

These are just a few things that go through my mind. The main thing is I do not feel comfortable right now, yet maybe it's me who needs to adjust?!? Maybe it's me who doesn't understand that what we're doing in therapy is typical. I don't know. What we get now, is somewhat different than what we received in Texas though. I always walked away from therapy with new ideas/activities/games, new books to read and songs to sing that all correlated with the Learning to Listen sounds/goal we were working toward, and most importantly, I walked away with a warm and fuzzy feeling of a nice productive day and felt good with the notes I went home with.

I know these are concerns that I have to bring up and discuss with my therapists. I believe that, together as a team, we have to build a foundation of what I expect of them, what they expect of me and if those expectations are not met, then be able to discuss our concerns openly. I do firmly believe that not every therapist is a fit for every student/parent ... and that's okay! But, when it comes to teaching my deaf child how to speak and listen, I strongly believe it is very important to have a solid, comfortable relationship with Aiden's therapists, especially when it's one that could last for years.

I just don't feel like I'm getting the "whole package". I admit, I'm the type of person who needs to understand everything, the type who has the need to always feel a step ahead. I not only want to understand what we're doing NOW, but I want to understand what's next, and then even what's after that. I want to see at least a dimness at the end of tunnel NOW, even though I know that bright light may be years away, just for my own necessity ... for my own warm and fuzzies.

So again, what I'm looking for is guidance from other CI/HOH parents/therapists and what happens in your therapies. I was going to give a synopsis of what we do in therapy, but decided against it. So my questions to you are:

• What does a typical therapy session "look" like?
• Do you focus on themed units for x amount of week(s) with activities/games to play, and language to incorporate?
• Does your TOD and AV (or any private therapist) work together on a themed unit to reach a common short term goal?
• Do you leave with a certain "something" to focus on for the next week or ? (homework)
• Do you leave with something new to incorporate into everyday routines?

Thank you in advance for all comments and/or suggestions! Any guidance is greatly appreciated!