My Daughter Continues To Amaze

Today I got news about A that blew me away. Not that I should be surprised...my daughter has constantly been amazing me with how she exceeds every expectation, whether it's with her gross motor skills, fine motor skills, or medical issues.

This time, the news was about her speech.

To give some background, A has had a lot of things going against her in terms of her speech. Specifically:

1) She was born with a bilateral cleft lip. While this was repaired at 7 months old (so well, by the way, that you have to look closely to see the scar) she has minimal movement on her upper lip. I think with the scars there her upper lip just isn't as pliable as it should be, which of course affects the production of certain sounds.

2) She is deaf/hard-of-hearing. She didn't get hearing aids until she was 6 months old, so she has always been 6 months behind in her "hearing age". And there may be some sounds that even with the hearing aids in she can't hear very well. Obviously, if you can't hear a sound, you can't reproduce it.

3) She has a paralyzed vocal fold.

4) Up until this past July, she had a tracheostomy, which affected speech production because a lot of air would come out of her stoma. Even though she's been trach-free for 6 months, some of these sounds ("f", "s", and other airy sounds) are just now coming in.

So, clearly, speech has always been an issue for her. We started speech therapy at Children's Hospital when she was only 11 months old. Back then, the goal was to get her to use sign language to communicate, as she was unable to make many sounds at that point. Eventually, she started to sign, and then speak. In fact, most of her signs have dropped now; she is pretty very verbal now, only using sign language once in a while to get her point across. Last year, she started speech therapy through the school district, per her IEP. Between getting two hours a week of school-based speech therapy, and one hour a week of speech therapy at the hospital, she's done a lot of intensive work. The hospital therapist mainly works on articulation, and the school therapist mainly works on language.

This past Monday, our private speech therapist did some testing on her (the Goldman-Fristoe test of articulation). Today she called me with the results:

A's speech sounds are within normal range.

Yes, you read that correctly. My baby, for whom speech has been such an issue, is within normal range for speech articulation!

There are still a lot of sounds she has trouble with, like "s" blends ("sh", "sl", etc). But our therapist said that for a lot of children these sounds don't even come in until age 6 or so. A is only 4 1/2! And she thinks that once A gets her stoma closed, which should be this coming June, even more sounds will improve. So, for all intents and purposes, A's articulation is within normal range, even though she still has work to do.

A's speech therapy is approved with our insurance only through the end of January. Our therapist suggested that we continue to see her for the next few weeks, and then take a voluntary break. We can then have A reassessed in 6 months. If she needs to come back, we'll submit the paperwork with insurance. If she doesn't need to come back, all the better.

I feel ok about this. This is just like her ending the hospital-based physical therapy in December: while she still has work to do with her gross motor skills, she is doing well enough to end, and is still receiving PT through school, plus adapted P.E., horse therapy, and now ballet, tap and gymnastics. She is still DOING physical things. With speech, she will still be getting 2 hours a week of speech therapy through school. And there are language building activities we can do at home. We talk all the time, so this is never-ending.

I cannot believe that A will be done with speech therapy at Children's Hospital! Having done it weekly for the past 3 1/2 years, it doesn't seem real. But discontinuing is bringing us one step ever closer to making her as typical as possible.