JJ struggles with speaking. I have posted about all of the various issues that we have with him. They have seemingly been unrelated. We had him assessed at the local school but were not comfortable with their insisted plan for him. Thus we decided to pursue an independent Speech Pathologist. In various ways God provided the name of someone to us and today was the first session.
We were to bring a bag of toys that JJ plays with and can say their names fairly well. We were also to provide a list of words he can say well. We struggled to even find 10 words that he articulates properly.
We had to leave at 1:00 for the appointment. JJ was all excited about it from last night packing the bag, so he spent 2 hours before the appointment walking around with the bag of toys begging to leave. He normally won't eat until mid-afternoon. Won't drink or eat. I was worried that he would be too grumpy if he didn't eat before we left so bribed and cajoled him into a bowl of cereal. 20 minutes into the drive he started telling me that his belly hurt and he had to throw up. Thankfully we made it without an incident but he kept begging me to stop the car.
The address they gave me was crazy - I got lost and was 10 minutes late. I don't have a smart phone so couldn't just look up landmarks. I finally called a friend from Columbus and she talked me there. I was on the wrong side of town...exactly where the GPS took me. That will teach me to trust the GPS!
The Speech Pathologist (SLP) was WONDERFUL! Initially JJ just laid on the floor and covered his face. Then he crawled into my lap on the floor and tried to hide inside of me it seemed. Eventually she drew him out and got him to say words. I was thrilled that she could draw him out! She couldn't have done it without his familiar toys. She spent over 1 hour and 20 minutes with him (for a 40 minute appointment) and it was enlightening.
First she started talking about "fronting." Then she said he was also "backing." Then she added that he is also "chaining" wrong. Finally she talked about how he is lisping.
At that point I was wondering what all of that meant and felt that it must all be just how he is moving his mouth.
But then...she said that she was not sure but was pretty confident that he has Apraxia instead of just severe articulation errors. She began to tell me about the Motor Cortex and how Apraxia is a problem in the Motor Cortex rather than just him not having learned to move his mouth correctly.
As I considered what that all meant I got thinking about his eating issues and asked if that was related at all. She said that she worked at a major hospital that is well known to me in their "feeding unit" with kids and said that there is a significant correlation between kids with Apraxia and them also having feeding issues. I told her about how he vomits several times a day and doesn't seem to get hungry. I told her about how today I cajoled him to eat at 12:30 and then he got carsick. She said that those things were very, very common with Apraxia. I told her that I have to feed him, stay insistent when he would rather run away and play, find foods very appealing to him, etc to get him to eat. She said it was all normal with these kids and that we are doing exactly what we should be doing to get him to eat. She said that most kids will grow out of it eventually. She talked about with some kids with the motor cortex issues, the sphincter at the base of the esophagus does not "time" right and leads to what looks like acid refux problems.
I was thankful that his issues haven't been so severe that we have to be at that hospital's "feeding unit." I was also sooo validated that it is not "bad parenting" on our part that has led to this problem. When we had a super picky eater in Buddy and found out he had Tongue Thrust that led him not be able to swallow certain food - it made me so glad that I did not force him to eat or starve him if he wouldn't eat exactly what we served. The same goes for JJ. This is a much bigger issue than us not requiring him to sit at the table and eat. It is not our parenting that led to this! She talked about how many parents get negative feedback from others when their kids are dealing with this and how we need to just learn to advocate for our child and not worry about what the nay sayers are saying.
As I puzzled a little more about the whole Motor Cortex, I asked her about how his hands don't work independently. For example, when he scratches with one hand, the other one moves too. He is unable to hold a pencil correctly and at 4 1/2 he is just now learning to scribble and showing any desire to color. She said that was all related.
It was at that point that I started crying. Crying because it is such a bigger issue than him just needing to learn how to move his mouth. This is a neurological problem. She went on to say that based on the feedback I was giving her about other motor issues that he has, that she was much more confident that he has Apraxia and not just articulation errors. She will move forward as if this is Apraxia and we will see how the treatment works - revising as/if needed. She then shared that kids with Apraxia have problems not just in the Motor Cortex but also the Basal Ganglia - the part of the brain affected with Parkinson's. She asked if he has problem with initiating speech, taking a long time to answer/find words, more motor issues. I said that he does.
I then asked about his problems with emotional dysregulation. She said that, too, is also related. In part due to the frustration of not being able to communicate well verbally and in part due to the neurological issues.
I know nothing about Apraxia except that it has to do with expressive speech issues. I have such a learning curve with yet another issue that a kid has. I was telling Beautiful that I feel like I am standing at the bottom of a sheer cliff and have to climb my way to the top...somehow. I have so many emotions at this time.
First, I am so thankful that SOMEONE UNDERSTANDS!!!!!!!! I feel validated that as many times as I have said this or that is a problem and people minimize it...that it is really a problem! Then I am angry and want to get up in some people's faces and just jump and scream at them for telling us that we "spoil" him and we don't discipline him right and that is why he has the problems that he has. We have ended relationships with people for them having got up on our face about it without getting to know what the problem really is or hearing us. JJ's behavior is NOT a result of us being "bad parents!" Well, not that we are perfect parents by any standard at all...but this is a neurological problem! His motor skills, lack of speaking, fear of people, wanting to be carried all of the time, emotional dysregulation...it isn't just a "behavior" problem that more discipline and structure will fix. It gives me quite of a bit of emotional dysregulation myself just trying to wrap my mind around all that we have endured by way of people's uneducated, insensitive, downright malicious comments.
Breathe......
I am also thankful that the school was so difficult. If they were not, we would have just had him "treated" there and the treatment would not have been right. It would have been a much longer time, if ever, that we sought another opinion and found someone who has the experience that is exactly needed for JJ's issues. That reminds me that God is sovereign over this, that He is orchestrating our path, and He knows the outcome of this.
I am terrified. What if he doesn't get better? What if he never can speak clearly? What if his fine motor skills never improve? What if? What if? What if???
Again, I have plenty of my own emotional dysregulation going on right now.
My dearest friend, the one who understands me as well as my own husband, is a SLP. I talked to her after the appointment and she was great with being a sounding board about this. Between her encouragement and God clearly leading us to this particular SLP who will be working with JJ, I have to remain hopeful for his future even when I am tempted to feel crushed beneath the weight of "what if's."
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