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. ; - )