This was a hard week for me. It took me 3 days to stop crying about JJ's tentative diagnosis of Apraxia. I started to look at his "issues" in a different light and it helped me to study how/why he does what he does and then understand him better. I felt hopelessness, despair, frustration, and grief for him and lost hopes for his future. But I finally regained my footing with many of you praying for us and I reminded myself that JJ is still the same JJ that he was 1 minute before we heard that word Apraxia and God is not surprised by this so I need to just buck up and persevere!
In the midst of coming to terms with that, Grace started full time at school on Monday. She loved her 1st 3 days of it, but came home yesterday sobbing about a girl who was mean to her. I was angry enough and wanting to protect her from further insensitive children that I wanted to pull her immediately and bring her back home where we can keep her from having to endure those comments. But, alas, I know that we need to work through this. She has several girls who are wonderful with her and did come to her aide. The teacher was notified by Grace herself and I am SOOOOO thankful that she knows that she can come home and tell us anything - as apparently one of the other girls told her to act like nothing happened and to not tell us. We will see what today brings. I am frustrated by several things with this transition and keep getting myself worked up by several things they require that take away my parental rights - reminding me why we home school in the first place. We have never had to navigate all of the "stuff" of public school so this is yet another steep learning curve. I mean, I have to make a Valentine's Day box...me!!! And make Valentines!!! lol! But...this is best for Grace and for our family so I, again, need to just buck up! I will say that the overall stress level of the house has probably gone from a 10 to a 4 in just 4 days. That speaks volumes:)
JJ's therapy Wednesday: A detailed account that will probably bore you but I want to get down for my own remembering:)
After Wednesday's session the Speech Language Pathologist stated that she is "convinced" that this is Apraxia. No more tentative diagnosis. That was hard.
She was encouraged that JJ was able to form some sounds he was unable to form last week.
She was encouraged that JJ is seeking to form sounds properly, even if he cannot.
It was AWESOME to hear him say Beautiful's name CORRECTLY for the first time last week, and again this week! Again, encouraging!
He was moving all over the place during therapy. She explained that kids with Apraxia, because it is a neurological dysfunction of the motor cortex, have to expend a lot of extra energy to sit in certain postures. Thus, sitting still in a chair or just sitting still will require so much motor/muscle energy that he then can't focus on learning to form words correctly. That made me feel better that we don't require him to sit and hold a "still" posture much. That is too exhausting for him and he can't learn in that posture as well.
She played a kind of "follow the leader" with him while asking him to form words. He did OK sometimes but he could not do it while walking backwards - too much for his motor cortex to coordinate.
The biggest emotional moment for me was when she asked him a question and he just just looked at her and said, "mmmm." This is a typical response for him in public situations. However, I found it odd that after engaging her for 45 minutes and being all over the place he looked to then get "shy." She said that this behavior is NOT shyness, but rather he cannot "find" the right words to say due to the Apraxia. I did notice that most of the time when she would ask him questions today (e.g. do you want to stand by the window or the table?) he would look at me first. I wondered why he would look to me as if to get my permission, but then I realized that he wanted me to speak for him as he could not coordinate all of that language. She said that at this time we are NOT to ask him to "retrieve" names of things for us (colors, numbers, letters, etc) but we are to label everything saying it first before asking him to repeat it - not to have him retrieve. She said that the Apraxia doesn't let him retrieve and we need to focus on word formation/articulation first. I wonder if this is also why he repeats a short phrase, particularly when he is upset, over and over and over for 20 - 60 minutes (or longer). It is almost like he gets into a "loop" and doesn't even realize he is in it.
Being told that was really hard as I want him to be able to know his colors, letters, etc. It was hard for me to hear that he cannot find the right words. She said that his receptive language is excellent and not delayed, but we need to get the motor strip working better first.
It was hard for me to think that we have (and others have) assumed that his refusal to talk was deliberate rudeness/stubbornness when in fact he is unable. He does get very afraid in situations and that fear just exacerbates his inability to find the right words to say. It makes me sit back and try to imagine what life is like from his perspective. How exhausting it is for him to do movement. The extra effort he has to put in to form words, find the right words, be still, move around...
eat... I now understand more of why eating is so hard for him. It is exhausting! He will usually eat a couple of bites (and rarely will he eat anything before 1 in the afternoon). This weekend he did not eat anything at all until 4 p.m. Even then I had to distract him with TV and it took me 45 minutes to coax him into eating one bowl of stroganoff (a favorite of his) with a lot of breaks in between. I noticed that today the SLP spent a lot of time distracting him with other activities (play doe, etc) while asking him to talk. Part of that was to get compliance from him, but part of that was to distract him from his muscle tiredness. We stopped the OTC acid reflux med as we now do not think it is a "too much acid" problem and we haven't noticed an increase in the problem. It even seems better now.
walk...Now I understand why he tells us that his legs hurt and he wants us to carry him.
I also understand now why it took him until he was 4 to be fully potty trained.
The only part that still puzzles me that I don't think has to do with the Apraxia is his sleep. I am finding article about the high correlation between Apraxia and Obstructive Sleep Apnea, and once the Sleep Apnea is rectified the Apraxia symptoms abate much quicker. However, I don't think he has any symptoms of Obstructive Sleep Apnea...so we will check it out just to be sure on this issue. He continues to not fall asleep until 11:30 or 12 at night. He still gets up between 3 and 5 a.m. several nights a week to crawl in bed with us. He still never naps (and hasn't for over 2 years - although he has never been a good sleeper - ever). He has, however, allowed himself to be weaned from the pacifier 5 months ago (and with it he seems to have given up needing my bra strap as his "security blanket"...yay! lol!!)
So, all of the family has discussed what is going on with him and how we are to talk to and with him. We are seeing a much, much calmer child since we have stopped treating him like he was just being rebellious and have started to talk to him like the SPL has taught me. I think we have only had a couple of temper tantrums this week. It has also helped that Grace has been gone - she is a big instigator of his temper tantrums as she won't listen to his words (specifically "no!") and he has a hard enough time figure out using his words in the first place.
It is well. We will navigate this adventure too. We will endure, persevere, and overcome because God has got this:)
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