Wow - it's been way too long since I posted on this blog. It was a busy summer! Jimmie's blog always gets priority. (-:
McKenna is not currently in therapy right now. First Steps dropped her when she turned 3 years old in July. They do not treat anyone above 3. Children's only commits to 6 months at a time. If the therapist feels its needed sometimes you can get another 6 months, but McKenna's therapist did not feel it necessary to continue. Her reason was because McKenna is now caught up in sufficient range with normal 3 year olds.
I teared up as I left McKenna's last session. I was just emotional. She is doing really well! However there are still some problems and I feel we are being inconsistent to not have her in therapy. I'll share about that more, but first here is McKenna in her last session with Ms. T.
Ms. T. is the one really responsible for getting McKenna to a place where the words she spoke were consistent enough to understand. She gave McKenna the tools to get words from her brain and out of her mouth. She did this by drilling McKenna over and over and over. It was really hard work, especially for a 2 year old, but I'm really glad she was tough on her and knew what she needed.
Ms. Cindy was great. We learned that McKenna has minor sensory issues, but Cole has a much more significant sensory problem. She always included Cole in her sessions and encouraged me to get help for him. We had Cole evaluated this summer at Children's and he is in therapy once a week for eating issues, hypotonia and sensory integration.
Aleah was wonderful. McKenna really enjoyed these sessions and it was good for her to be away from her home environment once a week for this session. McKenna loved her treasure chest game, blowing bubbles and playing with play dough. Aleah drilled "he" and "she" a lot near the end. McKenna still does not get that right most of the time, but she does not say any words with the "s" sound at the beginning spontaneously. I should clarify- she does say "s" words- just not with the "s" sound. "snake" is "nake", "spider" is "piher" etc... I think that "she" comes out "he" . . .
So the reason I think we are being inconsistent by not having McKenna in therapy is that she still has noticeable problems. I have written many times that the most significant problem with McKenna is the very wide gap between her developmental/cognitive level and her speech. That gap still exists. She still has noticeable trouble getting words out. This manifests in a few ways:
1. Stuttering or Disfluency. At times McKenna stutters repeating the same word or part of that word over and over. Or sometimes she elongates a sound. Her therapist said in August that she should not be doing that anymore in about 6 weeks if it was normal developmental stuttering. We are past the 6 week mark and she still does. Ms. A. also said stuttering is a separate (though closely related) neurological problem from Apraxia. I'm sure that is the case with kids who are not Apraxic. My theory- however is that this is not separate from McKenna's Apraxia. The severity of her stuttering comes and goes and seems to get worse when she has made a cognitive leap in "receptive speech and language development. I did some research and came across the term, "Disfluent Groping". I think this perfectly describes what McKenna is doing. "Groping" is when there is a struggle to get a word out. McKenna used to grope silently. You could see her lips working, her eyebrows tense etc.. but she was making no sound. Now I think she is still groping- only verbally. She has always had and increase of frustration and groping when she has made a developmental leap cognitively. I think this is because the gap between her receptive speech/language abilities and her expressive speech widens. Her developmental jumps with "expressive speech" happen less often and are smaller, so the gap remains.
Here is a video of her speaking with a lot of "disfluent groping"/"stuttering" present. The video quality is horrible so just turn your volume all the way up and listen. She says, "My truck is hiding from the halloween ghost." then she walks over to her truck and says, "truck the halloween ghost is not real!" (Our neighbors have a scary halloween ghost hanging from their tree...)
2. Another way her speech difficulties are noticeable is that she tires when she plays (verbally) very quickly. She has to stop and rest for a while. Cole is often upset because he wants to keep playing their game while McKenna is just wiped out on the couch having one of her quiet times. Also sometimes she'll keep playing, but she'll stop being verbal and that also frustrates Cole. He'll say, "Mom why is she not talking!!!".
3. And finally McKenna has started to communicate with words about her speech problem. She was trying to get something out the other day and she was stuck on a vowel sound. She struggled for so long she finally stopped and said, "Ugh, mommy- I can't find the words!"
So- it is true that she is now caught up with normal 3 year olds, but the gap is still there and her speech issues are still noticeable. I understand there may always be a gap. This is because Apraxia is (according to the experts) something you will always have. So to me that means McKenna will never have complete ease with her expressive speech. However the goal of therapy is to render that "unnoticeable". I want her brain to know and absorb all of the tricks to hide this deficit while she is young so that she "seems" completely "normal" as an adult.
Therefore my conclusion is:
She should still be in therapy!
I'm working on it. A few things need to be worked out related to "who?" she has therapy with and "how?" will we pay for it.
I appreciate your care and prayers!
For the very few who read this blog and not Jimmie's... It seems that an "Apraxia" diagnosis for him is looking more and more likely. )-: More about that soon.
Here is a picture from our fall photo shoot Rachael organized the other day.
Beautiful McKenna:
Love,
Amber
