"I Dance" And Children's Mercy Evaluation

We had a wonderful Thanksgiving. We drove to Columbia where Uncle Brian and Aunt Lisa hosted dinner. McKenna slept a lot of the way there and was completely overloaded and overwhelmed for the first couple hours after we got there. The house was big, lots of noise, 3 dogs and 30 people! After an hour or two she adjusted and did awesome.

The highlight was definitely late evening cousin Curtis played his fiddle with Pa (dad) playing the guitar. McKenna loved the live music. She and Cole danced and danced. She was so excited about it that whenever they finished a song she would say and sign "mooore" in the silence in front of everybody. That is big for her. She does not like to speak in front of people. She also was saying "ah dence" (I dance!)over and over as she twirled, jumped, swayed and kicked her legs. It was so precious!







Today was McKenna's evaluation with Children's Mercy Hospital for hearing and speech. There were no surprises today. That is good- I guess in some ways, but bad/sad in others...

McKenna's hearing was determined to be normal. That *is* good news.

I was not expecting, but perhaps I was hoping that maybe we had jumped the gun with McKenna's "Verbal Dyspraxia" diagnosis. Unfortunately the SLP today does *not* think so. She wrote- probable "Developmental Verbal Apraxia" on her paper. That is not what I wanted to hear. Obviously I wasn't surprised at all, but receiving that diagnosis for the 2nd time now and this time in a very respected hospital clinic has really hit me harder than I thought it would.

Also seeing this on her paper about McKenna:

Expressive Language Disorder - check mark followed by the word, "severe".
Articulation/Phonological Disorder- check mark followed by "severe; probable Apraxia"
Oral Motor Difficulties- check mark followed by "decreased range of motion"

Seeing that written on paper is just hard.

What is even harder is reading the papers she gave to me entitled:

"Letters to the parents of a child with Developmental Apraxia of Speech"

Some parts that jumped out at me:

First of all it was explained that children with DAS can be mildly to severely affected. (Note from me- The "severe" above- refers to her speech and language disorder *not* to her Apraxia. It's severe enough that it points towards "Apraxia". The severity of her Apraxia is yet to be determined..) Everyone who has looked at McKenna thinks she does have some good things going for her. She is verbal. But no one knows for sure what her future holds. The SLP today says she does think McKenna will be a verbal communicator. I'm glad she thinks that. She said McKenna could need pretty intense therapy for 2 to 10 years! Yes-- I said 10 years!!!

I read this in one of the letters:
" Many parents express concern about what the future holds for their child after the diagnosis of DAS has been made. I had the opportunity to follow children with DAS into their mid-20's. As a result of these experiences, it appears that we need to think of DAS as a lifelong communication problem." . . . .

After the "I had the opportunity..." sentence I was hoping to read something VERY different about what the experience of following kids with DAS into their mid-20's has shown. Instead- there it is: like a slap in the face- "a lifelong communication problem" . . .

More on prognosis:
" The eventual results are affected by a number of factors. The most important factors may well be the severity of the problem itself, and the type and length of the remedial services the child receives.... However, the attainment of totally "normal' speech skills may be unrealistic."

Lets hope and pray this is McKenna:

"Children with less severe DAS may well reach a level where they seem to make few, if any, speech errors. However the child and the family need to be counseled that they should not be surprised if DAS-type errors occur occasionally, particularly when the child (and later teenager and adult) is in a stressful speaking situation, is in a situation requiring a great deal of talking, or is tired."

Am I still trying to wriggle out of this diagnosis? Is there still hope that McKenna does not have DAS. Yes a tiny sliver of hope. I asked the SLP today if it's possible we are wrong. She said it's still possible McKenna could surprise us. She is still very young and only has about 50 or 60 words. That is not a huge sample of speech to make a diagnosis, but she said, "surprise". Meaning it would be "surprising" if it turns out McKenna does *not* have DAS. She said we will know within a year.

I know it has been hard and confusing for friends and even family to understand what the big deal is, what all the concern is about. Lots of kids don't talk until age 3. Lots of kids have speech issues, it's not usually a problem later on etc...

All I can say is that there are many types of speech disorders and delays, most of which are resolved to normalcy early on. DAS is one of the worst diagnosis you can get as far as speech issues go. There are many specific characteristics that point towards DAS and now two different organizations of professionals have recognized these characteristics in McKenna and have given her the DAS diagnosis.

I am well practiced at research and diagnosis myself even without professional training on many different subjects. When looking for answers for my daughter before I ever sought out the input of professionals, I too- felt that DAS was the most likely explanation for her particular signs and symptoms as related to her speech. It took me days to figure that out though. The sheer magnitude of speech delays and disorders, their characteristics and symptoms were very overwhelming to sort through. Especially without any training on the subject. After 3 days when I finally stumbled across a description of DAS my heart dropped to my toes, as I said before, this was describing my daughter.

I'd love to be wrong! I'd love it if Ms. T. is wrong, if the whole First Steps team is wrong... I'd love it if the SLP with Children's Mercy is wrong . . . .

Unfortunately as time goes by, as she receives more therapy, as she gets older, as more and more people concur . . . the less likely it is- that we are all wrong.

For my sanity and for the purposes of helping McKenna in every way possible I am choosing to accept this as her diagnosis and operate accordingly.

Prayers are always appreciated!

Love,
Amber