SLP Mommy of Apraxia

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Some kids are just smarter?

“Well, my brothers have a little bit of a bigger brain, so they are a little bit smarter than me,” declared a second grade student I see who just happens to have apraxia.

“I don’t believe they are smarter than you, or have a bigger brain than you,” I retorted. He was so sure though. Not in a defeated, depressed way. No, more in a matter of fact, I know more than you way, and he was just so sure. “My brother has a bigger brain, so that’s why he can build better Lego buildings than I can,” he said.

“Sweetie, your brother is in SIXTH grade and you are only in SECOND. Have you ever thought that is why he can build bigger Lego’s than you?” I argued.

“No, he’s just smarter. His brain is bigger,” he replied.

Sigh. Where do I start? I can’t let this go. I’m supposed to be doing speech therapy, but this is too important to brush off.

“I don’t care what you think, or how you sure you are,” I said, “I don’t believe their brain is bigger than yours.”

He listened.

“Sweetie, my husband is super AWESOME at Legos. He can put them together faster than anyone I have ever met. He is an engineer. An engineer is a person who tends to be good at math and good at figuring out how things work. I would make a terrible engineer. Not only can I not do Legos or figure out how things work, I really don’t care. You know what I’m good at? I’m good at talking. I’m good at writing. I LOVE words and language. My husband, you know, the Lego guy? He doesn’t like writing. He doesn’t care for words. So, who is smarter?”

His eyes got really big.

“Who is smarter?? Who has the bigger brain??” I demanded.

“I…I ….don’t know.”

“Exactly. No one has a bigger brain. We are both smart at different things, and you are too.”

He smiled. I hope he heard me. What a tragedy it would be for this child to think he is not smart. What a tragedy it is for ANY child to think they aren’t smart. Every child has gifts in different areas, and our job is to make sure they all know it, and they all find it.

March 3, 2015
Sing, sing out loud!

Apraxia is a journey. Speech apraxia is a journey, but global apraxia? Even MORE SO. So many skills to work on. So many things to improve. So many negative prognostic indicators to plow through.

The good news is that Ashlynn doesn’t know anything about prognostic indicators. She doesn’t know how heavily loaded she is in the negative column. Not yet anyway.

When I first had her receive services she was just under three. Her first week of Pre-K had her singing a melody similar to the song “Baby Bumblebee” with a lot of repetitive /B/ sound combinations. I was still able to pick up on it though.

I remember her first real radio song that she sang. I vowed to buy the CD back then. Well, I never did, but I still remember the song, title, and artist like it was yesterday.

Her current preschool teacher has been AMAZING for Ashlynn. At parent night, she described herself as someone who puts on “A SHOW.” I didn’t really understand what she meant, until recently. She sets everything to song!! Routines, concepts, new ideas….all set to melody. Ashlynn has thrived! She knows about hibernation, her native state of Colorado, and now the seven continents……because of song.

Ashlynn has sang a song “What’s the matter” frequently since she started school. That’s the only line she knew though. Tonight we were eating dinner, and Ashlynn just randomly busted out a “what’s the WEATHER” song. OMG. It’s not “what’s the matter!” It’s “what’s the weather!!” I figured out this time, because she sang it all the way through.

Mommy fail. Stupid apraxia, but Ashlynn awesomeness despite her apraxia! Sing, sing out loud Ashlynn!

Here is the song! So proud of my girl.

February 28, 2015
Pot O’Gold Articulation Game for Apraxia

I was finally able to make a new game for my kiddos with enough time to spare for St. Patrick’s Day! This game follows the same idea as my other repetitive games. Kids have a game board, in this case, a black pot:

The kids draw a card from the card deck. If the card contains a shamrock with gold coins, the child collects the amount of coins shown and then practices their targeted speech sound/syllable that amount of times.

Some cards have surprise twists that include “snatching coins from other players,” losing a turn, or giving some of their coins to other players.

The player with the most coins at the end wins the game! My kids really enjoy these games and I hope kids on your caseload do too! Enjoy! Get it in my teachers pay teachers store for free for a short time!

February 25, 2015
Prognosis is not just a funny word, there is nothing funny about it.

I don’t know why I am obsessively thinking about prognosis lately, but I am. I am required to give a prognosis when evaluating children. I’ve had to stare at a prognosis in my own child.

I received a prognosis once. I was seventeen and I balled my eyes out in my mom’s car. I was a senior in highschool, a starter and captain of the girl’s basketball team when my knee gave out after three games; and truth is, I only got through the last two on pure adrenalin. I wanted this season sooooo bad. I thought maybe I would get a scholarship. I never had the benefit of year round jam leagues or extra basketball camps like many highschool athletes. Everything I had achieved was with my home and park basketball hoops and my dad who practiced with me….A LOT.

We went to see Dr. Nygaard. Yes, I remember his name and it’s been almost twenty years and I only saw him twice. Let’s just say he made that much of an impact.

He could find nothing structurally wrong with my knee. MRI scans revealed there was a ton of fluid and it was inflamed, but nothing structural was amiss. Blood work revealed elevated rheumatoid factors (like rheumatoid arthritis), but it wasn’t high enough to dx with juvenile rheumatoid arthritis yet. I remember hanging on his every word, and that’s when he said,

“In ten years you will probably be in a wheelchair. It looks degenerative in nature and in a couple years your blood will probably show levels high enough to be officially diagnosed with a life of rheumatoid arthritis.” He went on about cortisone shots, anti-inflammatories etc.

“So wait. Are you saying I can’t play basketball?”

Yes, I was seventeen. I couldn’t believe what I was hearing. I cried all the way home while my mom put on her tough mama bear face and told me it was going to be okay. “Laura, you have to accept the prognosis, but I will always be by your side, wheelchair and all.” I cried harder. How could my mom believe him? It couldn’t be true, could it? I found out later her guilt was overwhelming, and yet it was nothing she did. Moms I guess are all universal and pretty predictable.

Now, one could argue he was being kind. In the end, it’s better to be honest and not give me wild hopes. If he truly thought I had the onstage of juvenile rheumatoid arthritis, wasn’t it better to start preparing me? All I know, is telling me I couldn’t play basketball was crushing enough, but now I had to accept I had some sort of degenerative auto-immune condition too. I mean, what else could it be?

I went on with my life, and pretty much abandoned ever picking up a basketball again. I still worked out and stayed active. I grew stronger. My knee improved slightly over the years.

At 27, ten years after that grim prognosis, I went back into my general practitioner and asked for my rheumatoid levels to be checked. They all came back normal, and guess what? I am still walking upright. I don’t have rheumatoid arthritis. Found out later after doing research, inflammation of the joints and rheumatoid symptoms can be a side effect of vaccines, which I received right before the start of my basketball season at my physical. My mom is convinced that is what did it. Oh, but medical doctors don’t question vaccine safety. That wasn’t on his radar so I must have a degenerative disease that would mean I don’t walk in ten years. Whatever.

Anyway, back to prognosis. Yeah, I don’t like them. I’m not a fan. I want to be honest, but I think my honesty might be a simple, “I don’t know, but we’re going to work our butt off.” Unfortunately, I still have to write a “statement” in a report. Guess this isn’t the last I’ll be thinking about prognosis.

February 20, 2015
There is a difference between not knowing, and not knowing yet!

Professional development today found me in a room full of teachers checking boxes about our personality characteristics. In the left column, characteristics were decidedly rigid, black and white, and defeatist. On the right were characteristics that spoke of resilience, “can do” attitudes, and a try again spirit.

I felt a little bad going through my own (private) personality. I marked off mostly a “mixed” personality which was in the middle. Sample statements?
“You try to avoid making a mistake a second time. You don’t like to think of them.”
“Feedback and criticism make you a little embarrassed. You may want to stop trying.”
“You will practice things you are already good at.”
“You may be willing to try something hard, but not if you are doing it in front of others.”

In this activity, the right column contained statements of a “growth” personality. It was clearly the superior and most effective personality to have, and I wished I could check off boxes in that column; but I could only check off one out of seven. As I read through them though, I realized Ashlynn fit them all:
“You will choose something hard rather than easy if you have a choice.”
“You see mistakes as a chance to learn.”
“You enjoy practicing and you work hard at new things.”
“You stick to it, and work hard. If something is difficult, you try harder.”
“You are willing to make mistakes. You’d rather try and fail than never try.”

Um, could I just pretend I was Ashlynn right now and look good?

No but really. That girl is truly UNBELIEVABLE. Her persistence, bravery, tenacity, and positive attitude all come together to make a person who will be successful despite any challenge. I’m embarrassed of all the skills I probably have that I just abandoned because I wasn’t naturally good at them. She abandons nothing. She faces fear after fear, disappointment after disappointment….head on. This is the reason for her progress.

One disadvantage to being in the profession while being her parent, is I see something called “prognostic indicators.” Every clinician, including myself, has to look at these indicators in making a prognosis. I mean, let’s face it. Sometimes the prognosis for apraxia is not good. Some might never achieve functional intelligible speech. That’s just reality. I told a mom the other day, apraxia is a beast. It’s not just your typical speech and language delay.

Ashlynn, unfortunately, has a TON of check marks in the negative column. Each additional apraxia adds a check:
Verbal
Oral
Gross
Fine
Visual
Other co-morbidities add a check:
Sensory Processing Disorder
Attention issues

That’s not a good starting point, and I haven’t even listed them all. Let’s just say on the positive side “one kick ass family” falls in that column; as one woman I highly respect put it.
Let’s just say, my family is on that side. Powerfully on that side. We have strength in numbers, we have prayer, we have God, and that is going to kick apraxia’s butt.

As I sat there thinking this though, I started to realize, maybe I’m not so heavy in that Mixed column. When it comes to my kids, I’m pretty heavy in the Growth Column. That same woman I just said I respect, also told me I was underestimating my own resilience. I didn’t hear her at the time, but maybe she’s right. When it comes to my babies, I am 100% in. No mountain is too big. No criticism is too harsh because none of it matters. I don’t care what people think my kids can’t do, because I know what they can do. I know what I can do, and we’ll overcome them all together.

February 18, 2015
Accuracy of IQ scores with global apraxia

Cognitive testing, psychological evaluation, IQ, psychologist, neuropsychologist. What do all these have in common? What do they have to do with a child who has a speech delay? What does it matter?

Tests of intelligence, commonly referred to as “cognitive” testing in the schools, are standardized measures usually administered to children as part of a complete battery of testing a child will receive when being considered for special education services (including just speech).

Ashlynn never had a cognitive test administered when she was first found eligible for special education services because she was so young. She is now five, and it is her three year review. As part of the battery of assessments, the school district is really pushing for a cognitive assessment. I’ve been hesitant for multiple reasons. This article on apraxia-kids.org Special Considerations for Psychological/Educational of Children with No Speech or Unintelligible Speech sums up my main fear.

“The first thing to keep in mind when testing children with significant speech delays is that most standardized tests of intelligence will either be inappropriate or of questionable validity.”

Apraxia of Speech definitely fits the bill in the definition of “significant speech delay.” In the schools, at least in the districts I have worked in for the past ten years, the test of choice remains the WISC (Weshler Intelligence Scale for Children) and the WPSII (Weschler Preschool and Primary Scale of Intelligence). These tests are great and provide a lot of information about how children learn. However, as the article points out, they would “at best, provide a crude comparison of a child’s ability in certain areas.” I would also add, that if a child has GLOBAL APRAXIA, meaning motor planning issues effecting the entire body, they are at even MORE of a disadvantage. There are visual scanning and visual motor components that will obviously come out low if the child is still in OT working to improve these skills. There are fine motor and pencil/paper tasks that will also come out low if the child is still working to improve these motor skills. To be blunt, I don’t think they are many subtests that could be validly assessed when a child is globally impacted. Which leads to my second fear that again this article sums up nicely,

“The second consideration (and most important), is that these types of tests should never be used to make predictions about a severely language impaired child’s eventual functioning.”

I want to laugh, and this is really NOT funny. I want to laugh because unfortunately this DOES happen ALL the time in the schools. It’s sad to say but I hear this statement quite frequently, “Well, he’s performing to his potential.”

Yep friends. It’s not like I’ve heard this once. I’ve heard this so, so, soooooo many times over my career.

Now, it’s not all bad. If the cognitive assessment is an accurate reflection of the child’s abilities, then it is important that we are not pushing a child to do something that they just cannot do. It’s not fair to the child. It causes stress, it makes them feel stupid, and many times they feel like failures. Accepting a child where they are at is important.

However, if the score is inaccurate, this is also not fair to the child. That is why these types of tests should never be used to make predictions about the child’s eventual functioning……but as I’ve just explained, they are, more frequently than not, at least in my experience.

So, what do we DO about this? Well that certainly has been my dilemma as of late. I can tell you what I am doing. If the school pushes to test, then I will talk to the psychologist and make sure a nonverbal test of intelligence is administered. I do not want a test that has a verbal section. Period.

I am going to take Ashlynn to a neuropsychologist for testing. A school psychologist is trained and qualified to assess cognition, but they do not have the advanced training in neuropsychological and cognitive testing that a neuropsychologist does. Why is this important? Well, I personally think a psychologist with more advanced training in neurological disorders and subsequent testing will yield more accurate results.

Lastly, I’m still going to be Ashlynn’s biggest fan, the one who has her back, and the one in her corner. I know her potential and I’m going to make sure she always knows it too.

February 17, 2015