When we first had the diagnosis of Apraxia for JJ I knew that it's official name is Childhood Apraxia of Speech. I had thought it had mostly to do with speech. However, JJ's difficulty with speech is just a small part of what impacts him. So as he got to school age we started to realize, then research, how much his learning is impacted. Apraxia doesn't just affect speech, it affects "language." I have a friend who is a Speech Language Pathologist and when I first met her I had absolutely no clue that "speech" and "language" are two very very different things. Language is not just "grammar" like one would think in English class lol!
I found this way to described the difficulty of language, not just articulation of sounds, for Apraxia that I thought was very helpful to my understanding from www.speechandlanguagekids.com:
What is Childhood Apraxia of Speech (CAS)?CAS is a rare, neurologically-based speech disorder where the child knows what he wants to say but the message gets mixed up in the motor planning and execution phase so the sounds come out all wrong.
Imagine it’s like you’re driving your car and you know you’re going to turn right so you turn on your right turn indicator (or blinker). But then, for some reason, your clock starts flashing instead of your turn indicator light (true story, I once had a car that did this). So you think, “Well that wasn’t what I wanted to happen” and you try again. This time, your trunk pops open! Imagine how frustrating that would be!
That’s exactly how it is for our kiddos with CAS. They know what they want to say and they tell their mouth to say it but it just comes out all wrong.
So, in addition to him not being able to speak the right words, he struggles with being able to "pull up" the right word. For example, if he wants a strawberry he can describe what he wants (e.g. I want the red thing, that is in the fridge) but usually can't actually recall or say the word "strawberry" (which is so odd that he can remember colors, "fridge" and other descriptive words but not the actual name. But think of the people that you know with the start of dementia who can remember things you have done together but might blank on your actual name). Now, if there were 10 fruits sat in front of him and you ask him to point to the "strawberry" he would do it without any delay at all. The problems is with "expressive" speech, not understanding the language.
Therefore, imagine the extreme difficulty with learning how to read. He can see an "a," he can point to the "a" in a lineup of letters, but he cannot see an "a" and pull out of memory the sound for "a" and then say the "a" without a lot of mental effort. Not to mention that "a" has multiple sounds that must be remembered!
Then the next level is putting together multiple sounds. So he has to remember the sound for "b," then hold that in his head while remembering the sound for "a," and hold BOTH of them while pulling out of memory and remembering the sound for "t." Then put it all together at the same time.
We struggled significantly with figuring out how to help him learn how to read. He didn't speak in a way that we could consistently understand until he was 5. So by age 7 we were still primarily focused on articulation so he could be understood, and trying to figure out how to help him remember letter sounds. Mostly we used a song and a corresponding picture (e.g. a, a, apple; b, b, butterfly). So then when he would see the letter he would call it "apple" or "butterfly." lol! Imagine trying to teach a kid to read when he thinks /a/ says apple:)
So after a lot of struggling, a year ago at age 7 we decided to have him assessed by the school to see if he qualified for an IEP so that someone with specialized training in those areas could help him. It was a very hard testing results meeting for us to attend. He qualified in 7 areas. Of course all of them were related to reading - including math because some of the math required reading. (We also had him assessed at age 4 and he qualified but we strongly disagreed with their recommendations - that we could not be with him during services. And with his strong separation anxiety at that stage and the fact that he would not speak with anyone except family we sought private services instead (how in the world were they going to get him to speak properly when he refused to speak at all unless we were with him?!?) and turned down the school's offer. But since making progress with the separation anxiety we decided to try again).
The outcome of that meeting was him going to the public school 3 times a week for this school year for a couple of hours each for work on speech articulation, language skills (like understanding language concepts such as "over, under, etc" and being able to name items that are pointed to), math, and learning letter names/sounds/how to read. He also has an occupational therapist helping him with handwriting.
He has made progress in the past year and is now actually reading. It is still very hard for him and by the time he gets to the end of a sentence he often cannot tell us what the sentence was about because he has had to spend so much time decoding letter sounds/blends that he can't also retain the actual meaning of the words he just read.
He hates it. I am not overly excited about how they are conceptualizing his issues as individual to him, rather I think they are trying to just put him in the "box" of their curriculum. But, again, I am not the specialist. But he really hates going. We told him that as soon as he can read well we won't make him go anymore. That has been his motivation - but it is taking longer than he wanted it to...
But, give the kid a math problem and he thinks through it well, and is right on track for the Math-U-See curriculum that we use for him at home. He is a very outside of the box thinker, is curious, and is not held back by "you can't do that" when he is trying to solve a problem. He has learned so much of this world by trial and error instead of "you should do this or that." I love how he thinks and once he can get reading mastered I think he can take on the world.
I strongly disagreed with their IQ testing of him, but even with that he qualified in many areas for help. I have been trained in IQ testing and have conducted many IQ tests on others in my early career. But even IQ tests are based on "norms" of the mass population. But every population has "outliers" and I believe JJ is one of those. I will never forget my graduate Ethics class being taught by a woman named Elaine. I can't remember most of my professors in all of my college years but I remember her. She had a doctorate degree...and had Cerebral Palsy. As part of teaching us Ethics in our career she drove home "know why you do what you do!" She described herself as a young child who was tested for her IQ and the testers told her parents that she was developmentally disabled (not the word for it back in those days) and to just take her home as she would not amount to anything. Many parts of IQ tests are timed. For a person whose hands shake or it takes them time to articulate answers (it took Elaine a long time to say what knowledge she was imparting to us, but it was worth it!) - it does not mean that they do not know it! It means that you have to test them differently. I learned so much from Elaine and I am so thankful that her parents went home, dismissed the IQ tester's results, and just found other ways to get their brilliant daughter the opportunities that she needed to be all God created her to be.
After JJ's testing results meeting my heart hurt but I remembered Elaine and decided that we would let him go and get that specific help, but that JJ is not bound by what the norms on a test say make him in "normal limits" or "below average." I do not believe they see him any different than the test results, but that is just the reality we have to accept.
Two months ago we had the annual IEP followup meeting. They agreed that he has made gains, but I think they still really see him by his limits. In an effort to live by "if you don't have something nice to say don't say it at all" I will not say more on that. So, I have been seeking other opportunities to get those gaps filled in for him. I have a couple options that we hope to focus on this summer. We will see what comes of it.
I am in the midst of trying to figure out what to do for home school for him for next year. He is not an auditory learner. Being as he also cannot read I often feel like some subjects that I teach are like trying to teach Helen Keller. She had a brilliant mind, but it had to be tapped into by people who loved her and didn't give up. So, I am trying to think outside of the box (not my forte). For example, reading him his history and science lessons isn't resulting in him absorbing any information. So for yesterday's science lesson I pulled up youtube videos on "hovercrafts" which he did have a short attention span for. When I noticed that he was losing focus I showed him videos of "hovercraft racing crashes" which renewed his interest lol! Then we watched the original footage of the Wright Brothers' first successful airplanes for history. Of course, then he asked for footage of ice hockey fights. The other day when we did this we pulled up several live streams of space satellites, baby eaglets, etc but he thought they were boring! Boys lol!
Most of the curriculum that I have is a "classical" style which is a lot of reading historical fiction, etc. I LOVED it with my oldest 2 and it worked great with them. With the Middles we had to switch it up due to learning styles but with 2 of them it was a good fit (until other issues resulted in us having to put them in a Christian, then public school). But it is not at all a good fit for JJ. So I am grieving this style of teaching and having to think outside of the box to figure out what will actually work with him. And then having to purchase all new curriculum (sigh). I know for sure a traditional classroom will not work for him.
Also, if you remember from the last post about getting him to sleep - I had to reward him with Fortnite every day that he slept through the night as that was the ONLY "carrot" big enough to entice him. I am so excited to report that he sleeps through the night all but a couple of nights a month all night in his own bed!!!!!! Finally!! After 8 1/2 years lol!!! Anyway, I have now added that he has to read a book every morning before he gets to play Fortnite. And for every book he reads he gets $1. Yes. It is a major reward for doing what, in my opinion, just needs to be done. But nothing with raising JJ has been easy... I just keep adding on (not too much at a time that will overwhelm him and make his refuse to do any of it) more stipulations to his Fortnite time on things that are on the "you have got to do this" list (like reading and sleeping). But, yay to my husband and I for getting to sleep most nights through the night!!!
We will figure this parenting and CAS thing out:) In the meantime, I am so thankful for home schooling, for computers/internet/you tube, for tons of different types of curriculum options, and for a woman named Elaine who didn't succumb to the low expectations of an IQ tester but instead didn't give up-finding other ways to achieve her goals - that changed people's lives:)
But, give the kid a math problem and he thinks through it well, and is right on track for the Math-U-See curriculum that we use for him at home. He is a very outside of the box thinker, is curious, and is not held back by "you can't do that" when he is trying to solve a problem. He has learned so much of this world by trial and error instead of "you should do this or that." I love how he thinks and once he can get reading mastered I think he can take on the world.
I strongly disagreed with their IQ testing of him, but even with that he qualified in many areas for help. I have been trained in IQ testing and have conducted many IQ tests on others in my early career. But even IQ tests are based on "norms" of the mass population. But every population has "outliers" and I believe JJ is one of those. I will never forget my graduate Ethics class being taught by a woman named Elaine. I can't remember most of my professors in all of my college years but I remember her. She had a doctorate degree...and had Cerebral Palsy. As part of teaching us Ethics in our career she drove home "know why you do what you do!" She described herself as a young child who was tested for her IQ and the testers told her parents that she was developmentally disabled (not the word for it back in those days) and to just take her home as she would not amount to anything. Many parts of IQ tests are timed. For a person whose hands shake or it takes them time to articulate answers (it took Elaine a long time to say what knowledge she was imparting to us, but it was worth it!) - it does not mean that they do not know it! It means that you have to test them differently. I learned so much from Elaine and I am so thankful that her parents went home, dismissed the IQ tester's results, and just found other ways to get their brilliant daughter the opportunities that she needed to be all God created her to be.
After JJ's testing results meeting my heart hurt but I remembered Elaine and decided that we would let him go and get that specific help, but that JJ is not bound by what the norms on a test say make him in "normal limits" or "below average." I do not believe they see him any different than the test results, but that is just the reality we have to accept.
Two months ago we had the annual IEP followup meeting. They agreed that he has made gains, but I think they still really see him by his limits. In an effort to live by "if you don't have something nice to say don't say it at all" I will not say more on that. So, I have been seeking other opportunities to get those gaps filled in for him. I have a couple options that we hope to focus on this summer. We will see what comes of it.
I am in the midst of trying to figure out what to do for home school for him for next year. He is not an auditory learner. Being as he also cannot read I often feel like some subjects that I teach are like trying to teach Helen Keller. She had a brilliant mind, but it had to be tapped into by people who loved her and didn't give up. So, I am trying to think outside of the box (not my forte). For example, reading him his history and science lessons isn't resulting in him absorbing any information. So for yesterday's science lesson I pulled up youtube videos on "hovercrafts" which he did have a short attention span for. When I noticed that he was losing focus I showed him videos of "hovercraft racing crashes" which renewed his interest lol! Then we watched the original footage of the Wright Brothers' first successful airplanes for history. Of course, then he asked for footage of ice hockey fights. The other day when we did this we pulled up several live streams of space satellites, baby eaglets, etc but he thought they were boring! Boys lol!
Most of the curriculum that I have is a "classical" style which is a lot of reading historical fiction, etc. I LOVED it with my oldest 2 and it worked great with them. With the Middles we had to switch it up due to learning styles but with 2 of them it was a good fit (until other issues resulted in us having to put them in a Christian, then public school). But it is not at all a good fit for JJ. So I am grieving this style of teaching and having to think outside of the box to figure out what will actually work with him. And then having to purchase all new curriculum (sigh). I know for sure a traditional classroom will not work for him.
Also, if you remember from the last post about getting him to sleep - I had to reward him with Fortnite every day that he slept through the night as that was the ONLY "carrot" big enough to entice him. I am so excited to report that he sleeps through the night all but a couple of nights a month all night in his own bed!!!!!! Finally!! After 8 1/2 years lol!!! Anyway, I have now added that he has to read a book every morning before he gets to play Fortnite. And for every book he reads he gets $1. Yes. It is a major reward for doing what, in my opinion, just needs to be done. But nothing with raising JJ has been easy... I just keep adding on (not too much at a time that will overwhelm him and make his refuse to do any of it) more stipulations to his Fortnite time on things that are on the "you have got to do this" list (like reading and sleeping). But, yay to my husband and I for getting to sleep most nights through the night!!!
We will figure this parenting and CAS thing out:) In the meantime, I am so thankful for home schooling, for computers/internet/you tube, for tons of different types of curriculum options, and for a woman named Elaine who didn't succumb to the low expectations of an IQ tester but instead didn't give up-finding other ways to achieve her goals - that changed people's lives:)
