JJ woke up at 7:30 this morning and refused to go back to sleep with me. (Praise the Lord he has slept through the night for 3 consecutive nights though! Woo Hoo!!!) I knew that was going to mean a very bad afternoon at Speech Therapy...and I was right! JJ usually sleeps until sometime between 9 and 11. I know that is late. I know people think that is why he won't go to sleep until late. If they want to come and try to adjust his sleep cycle...they are welcome to it.
As it is we are in a pattern that works and we enjoy the mornings of getting things done while he is sleeping:)
So, when JJ fell asleep in the car at 1:15 on the way to speech therapy I knew that waking him would be bad. JJ does not wake well. Even when he has had full sleep and wakes himself he wants to snuggle for a long time and is groggy. It used to take a couple of hours for him to "wake up." Now it is 30 - 60 minutes...usually.
I got him from the car seat and carried him in. I tried to wake him. He wasn't cooperative. We went into the room with Ms. Erin...JJ then got increasingly upset.
Ms. Erin then got to witness one of JJ's Temper Tantrums. The big kind where he pulls out my hair, bites me, kicks me, punches me, and scratches me. At least he was too out of it to do the screaming...that was a blessing:)
It was also a blessing that Ms. Erin got to watch it. I spent the 10 - 15 minutes trying to wake and calm him (He just wanted to cling to me and hang onto my bra strap - evidence that he was very over stimulated). I finally decided that it wasn't worth it and to just let him fall back asleep. He was sleeping again, VERY DEEPLY, within 2 minutes. Ms. Erin was impressed lol!
I got to spend the time talking with Ms. Erin about our dilemma of when JJ's behavior is because of the Apraxia and when it is because of "strong willed stubborn" child. She agreed that it is difficult, so we broke down his behaviors to try to figure it out. I am thankful that she has a daughter JJ's age so that she is very familiar with "normal" behavior in addition to her expertise with Apraxia:)
She talked about Apraxia therapy being done mostly in the 1960's and Sensory Processing Disorder research primarily being only in the past 10 years. That means that the issues that link the two haven't been well researched. However, in her experience there are a lot of links between the two. With there being damage to JJ's motor cortex, it is a guessing game how "global" the problems are. They can be very specific to a certain part of his motor cortex, or it can be more global. As with all brain abnormalities, it is difficult to pinpoint specifics.
However, she did share that kids with Apraxia tend to have problems with those neurons "waking up" after the child wakes up. It makes them groggier longer so they can't do motor skills as well as another child whose brain "wakes up" more quickly.
We talked about his various sensory processing issues. For example, the way that he calmed today was to be held tight with strong proprioceptive stimulation. She said that I did the right things in how I was calming him. She said that this particular temper tantrum anyway was not a willful tantrum but a sensory processing problem - reacting negatively when he was woke from a deep sleep.
He slept the rest of the session, slept through being buckled in the car, slept through being unbuckled and wrapped in a blanket and placed in a shopping cart in Hobby Lobby, slept through being put back in the car seat, and finally woke when we got back home. Aside from the time frame of the tantrum he slept 3 hours and 15 minutes. For a kid who never naps I was shocked.
Anyway, I was able to talk through with Ms. Erin a lot of his behaviors since he was sleeping and she couldn't do therapy with him:) We discussed how frustrated he gets when people don't understand him (obviously very normal).
I told her about the problems that we have when we cut his hair. He HATES the clippers. He fights us like a mad man whenever we got to cut his hair. I hate cutting his hair. I hate even thinking about cutting his hair. One person has to hold him down while we cut his hair. It is a horrible experience. Sensory issues.
You know how most kids love to be raised up high in the air, or at a minimum to be held up over the adults head? JJ FREAKS out. Hates it. Even this weekend he ran to me and went to pick him up high and as soon as his head got an inch above my head his eyes got huge and he frantically grabbed at my head so that he would not go higher. Sensory issues...
He fights taking medicine. I studied him a lot last week when he was so sick. When I went to give him his medicine and after initially refusing and my verbal insistence, he finally said, "just a little bit." I have always thought that he was just refusing to take the medicine. However, I decided to give him just a "little bit." He took it fine, then drank some water, then took "a little bit" again. I realized that by giving him even 1/2 tsp of medicine at a time I was choking him! He cannot swallow even that at a time! Most kids can drink with continuous swallowing. JJ has to swallow, stop, swallow, stop. When we give him enough to just sip, he can do it fine. I never noticed it because he usually only uses a sippy cup (it is less messy!!). I tested out my theory with giving him a straight cup and also with a straw and a cup. He cannot continuously swallow. Once I let him take his medicine with sips, he took it fine! So many things that I have thought were strong-will are not.
Ms. Erin was not surprised by this revelation and said that swallowing issues are common with Apraxia. She said that by doing exercises to improve his speech, it will help him swallow. But exercises to help him swallow will not improve his speech. It has to do with which muscles are being strengthened in the mouth.
So, for next week I am to get him to try to make the "k" sound. Apparently the muscles with the "k" sound are some of the ones with swallowing, so it will give her an idea of where he is at and what muscles to be working on.
The swallowing problem also helps explain why he "can't" (not won't) eat certain foods and gets fatigued so easily when eating.
It was also helpful to be reminded that JJ does not have language to tell us when he is overstimulated, can't swallow, etc. Thus, it all comes out with Temper Tantrum. The better we are at reading his cues the few tantrums we are having.
The past 3 weeks have been a bit easier. A lot of it is with Grace gone at school all day-there is far less "sensory input" with her gone. But a lot of it is also in how Ms. Erin is teaching me to talk to JJ. I also name everything and always give 2 choices. That way he doesn't get frustrated with trying to retrieve information that he can't "find" and he is feeling like he is being given choices. So, I will say things like, "Do you want to sit on the table or on the chair?" or "Do you want to watch a TV show or a movie?" When going through the DVR shows I always name every show so he started to associate names with them (and I can hear how he says those names so he doesn't get frustrated that I don't know what he is saying:)
So, a temper tantrum was not in my plan for today's session, but God knew that it was exactly what was needed to give Ms. Erin diagnostic information and for me to have the extra time to ask her questions and learn more about how JJ "works" without distracting the therapy. She kept telling me what a great job I was doing of studying him and advocating for his needs since he can't do it himself. It made me feel very self-conscious but it also made me thankful that I am JJ's mom. I am doing something right here. I will shield him from those who think it is him being "spoiled" and "willful." I have big shoulders and I will fight for him. I will study him and learn how he "ticks." I will take him to therapy and help him to speak better so he can advocate for himself one day.
And...his looooong nap allowed Beautiful and I to slowly peruse the new Hobby Lobby and come up with a very cute prop idea for her upcoming Save the Date pics. I discovered that a sleeping child while I am in Hobby Lobby is dangerous - I wasn't distracted to get out of the store right away so kept coming up with "wouldn't that be fun?" or "I could try that craft!" ideas. Ha! I have shelves and shelves of books that I see and think "that would be a great one to learn more about that topic" that I never get to...adding crafts to that would probably make my husband go crazy (or have that excuse to buy yet another gun and spend more time hunting and target practicing lol!
JJ is on my lap begging to go make a blanket with the fleece I did buy him today at Hobby Lobby. All of the other kids have big fleece blankets and he always has to use theirs. Now he will have his own. Hmmm...I did get to sneak a short term craft into my life lol!
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