The great news first...We just measured JJ since he is finally GROWING...and he is at the 50th percentile for height!!!!!! We have always struggled to get him even on the growth chart, then above the 10th percentile. The highest he had gotten before was the 25th. AND he is on the 75th percentile for WEIGHT! Woo hoo!!! Yay for improved ability to chew and swallow!!! He has grown a full 2 inches since we started therapy!!!
Last session he was pretty active. She started some musical components as a way to help teach him to separate phonemes. Right now he is able to say words, but often times kind of puts the first sound (or his way of making the first sound) and the last sound all scrunched up together. So "bow and arrow" sounds something like "bear" (although he can't make a /r/ sound). We are working on getting him to say each sound.
We understand him better than before, but we still need context and to know what he typically calls things. There are words that he is able to say clearly like "good," "hi," hug," etc. There are other words that aren't necessarily clear but most people could make out if they heard him. Anything that involves more than 1 syllable is suspect though, and anything with an /f/ or /v/ or /s/ or /th/ sound.
It still takes him a long time to "retrieve" words. He has some words and phrases that he has those neural connections firing very well and rapid. However, when asking him novel information he still takes a long time to retrieve words and give answers. That is part of why in public he won't talk to people and tends to just hide his head and not respond (beyond "hi" or "good").
The SPL states that some research has been done suggesting the using a stand up scooter may be helpful, specifically standing with the right leg and pushing off with the left leg to increase that neural activity in the areas he needs it. We are looking to get a scooter now...it can't hurt:)
She also is looking for some research that she had seen that may indicate that kids with Apraxia may struggle with reduced REM during sleep. That may be a reason that he is struggling with sleep so much. We are waiting to see more of that research. The sleep issues are the only issues that we have not found a direct Apraxia cause yet, other than the difficulty waking in the mornings due to the motor cortex taking longer than other kids to "wake up" along with all of the sensory overload issues in the morning (unable to eat, nausea, car sickness, being really cold, etc).
This week's session my husband and I both attended. JJ was much more subdued. I know that when you guys see him you see him usually silent and shying away from people (unless you see him at church lately - his one social place that he feels safe and comfortable...perhaps too comfortable lol!). But at home he is a constant ball of energy, noise, movement, and speech (his way). We have not figured out why some weeks he is very energetic and some weeks calmer at therapy. I would think that once he feels safer there he would be more energetic every week, but who am I to try to figure out my kids lol! The SPL is also using music to help him anticipate and retrieve words (singing the same phrase repeatedly, or just changing up one word like the part of the body, etc).
JJ is a very intelligent child and his receptive language skills are very good. However, JJ is also a very stubborn child (and embarrasses easily) so getting him to be compliant to work on speech is difficult. He would rather joke around and be a clown, taking the focus off of what he knows is not "normal." That means that we work very hard to not push speech, encourage him when he tries rather than when it is said correctly, and try to make a game out of the teaching.
He still dysregulates about once every 1 - 2 days becoming physically uncontrollable. He is triggered less often than he used to be. It is a bit odd to watch the process. He triggers and his amygdala goes into alarm mode. There is then no "logic" that we can interject. He pushes everyone away and is violent. He goes into a verbal feedback loop during that time where he repeats himself for 10 - 45 minutes. Then it is like a switch gets flipped and he goes to sobbing and clinging and very sad. Last Sunday was an example of how hard it is to read him. Usually he is very difficult in Sunday School as we wake him to take him to Sunday School and he just wants to be held. He did OK in Sunday School this week though. But by the time we got to church I had to take him out 3 times. I don't think I have ever had to take him out 3 times (usually it is not at all). The final time we just walked home. As soon as we got home he asked for a bowl of soup...he was hungry! Since we are not used to him eating anything before 12 - 2 p.m. due to his nausea/sensory issues we weren't prepared. Asking him to eat is always a tricky situation. So, we just wait for him to lead or prepare food and leave it available for him to eat (he still insists to be fed most of the time). I think that the chewing/swallowing/fine motor skill of getting the spoon to his mouth is just too much at once for him. However, it seems that he is now getting hungry earlier in the day so we will have to figure out how to deal with that on Sunday mornings... However, a lot of his behavior is also clearly mirrored after Grace. We have been having a very, very terrible time with her lately and the frustration is only increased when JJ does what he sees her doing. However, that is for another post as my blood pressure raises every time I think about what we are dealing with with her and I don't have time for that today!!
On to a lighter note;)
Today he asked for cookies. I was delighted and said that we could make some together. He informed me that he did not want to make cookies...he wanted Oreos. Yes, this little tyke is in agreement that Oreos are America's #1 cookie lol! He doesn't like chocolate, he doesn't like sugar cookies, but Oreos are his favorite (right along with his big sister;)
JJ is also all boy. My other boys were not this..."boy." He loves to belch and fart. He thinks it is hilarious. This is a new issue for me. Lately his favorite thing to do is pee outside. Yes, if you drive by and see my child urinating on the lawn...I apologize. He has recently learned that one can relieve themselves (if male) while standing up and it has become a favorite past time. Sigh... As if the ninja moves, sword/light saber fighting, shooting, Super Smash Bros, and bow and arrows were not boy enough;)
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