SLP Mommy of Apraxia

Tag: Ashlynn update

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
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
I need to remember they are my sunshine, when skies are gray.

I always say they aren’t any easy answers, only tough choices in this game of parenting. Sometimes, I think I know too much. The special education teacher approached me yesterday about placement for Ashlynn going into Kindergarten. Her attention is such a problem. It could be related to the apraxia and sensory processing disorder, or it could be something else. Who the hell knows. I know she was giving me professional courtesy by asking what I thought would be best, but I have no professionalism when it comes to my children. I’m their mama, plain and simple. It is just tooo hard to be both.

I could tell this woman was clearly hinting toward a program called ILC. It basically means a more restrictive special education programming where Ashlynn would have a teacher’s aid assigned to her, but it would be integrated full time into the Kindergarten classroom FML. Decisions, decisions.

I don’t want her to have that “label.” Yes I know, I’m an SLP and I work with those labels everyday and yes, I love each and everyone of those kids.

I also know this. I know that this past week my colleague was working with a high functioning kiddo with ASD, also in “ILC.” He is also mostly mainstreamed in regular education, holding his own. The class was doing a compare/contrast assignment on characters in a story. He did an amazing bubble map and flow chart and compared the characters, even comparing their feelings. When he went back to class, the SLP had him share his work, including the great insight on the character feelings. The teacher responded, “oh, well he could have just said one was a boy and one was a girl.” I’m sorry, but I had to wonder, was it because this boy was in ILC? He had come up with something way more abstract than just one was a boy and one was a girl…but whatever.

I had pretty much already decided last night Ashlynn wasn’t a fit for ILC. I mean sure, extra teacher support would benefit her greatly, but she can do this. Don’t underestimate her. Oh, and may I mention I came to that decision easily (meaning tears).

Then today happened. The one day I’m not at my daughter’s school, I come home to find out my daughter “ran away” at recess, and no one found her until they did a head count. She was still on school grounds “collecting rocks in a bucket with a friend” when they found her.

So….is this the wake up call I need to admit my daughter needs this special programming? If she had a teacher’s assistant, she would never be out of someone’s sight. Ugh. I hate this!!!

Oh, and did I mention the social worker reminded me I still hadn’t filled out the “the Vanderbilt.” For those of you that don’t know, that’s a test for ADHD. Again, FML. All these decisions are freaking overwhelming.

Then, as I was going home, my mother-in-law who watches my kids told me that Ashlynn, exasperated over something today exclaimed, “bummer!!” When asked who said that, she matter of factly told her, “my mommy.”

Smiles

Oh, and Jace sang “You are My Sunshine” all the way through today. Yep, he learned that from me. I sing it to them every night.

And I remembered. That is what life is about. Not the special programming, the teacher’s aid, the ADHD test, the “running away and, and, and…….

Life is about my rays of sunshine. Everytime. Everywhere. Always. No matter what. I wouldn’t trade it.

“You are my sunshine, my only sunshine. You make me happy, when skies are gray. You’ll never know dear, how much I love you. Please don’t take my sunshine(s) away.

February 5, 2015
She observes more than we know.

It started with the name disintegration at Thanksgiving. My concerns about her writing were brought up to the staff as she flitted playfully around her preschool room while we talked. I cried and I made tough decisions.

She noticed.

I didn’t know it at first. It started out innocently with her asking when she would see Dione (her private OT) again. I told her I had to apply for more funding and then we could see her. I figured that was the end of it…..but it came up again.

” I need to see Dione,” she said again randomly one day.

Me: “Oh I know honey, I’m still waiting on funding and hopefully we’ll see her soon.”

Weeks passed.

Again out of the blue she says one day, “Mommy. I NEED to see Dione.”

Me: “Oh sweetie, I know. Hopefully soon. I applied and now I’m just waiting to hear back.”

Crying.

“MOMMY!! BUT I NEED TO SEE HER.”

Me looking confused, “honey, what’s wrong? why?”

Ashlynn talking through tears, “because I need to practice my yetters (letters).”

With my heart breaking in two I give her a hug. I tell her that her letters are perfect, and that she always works so hard and she has nothing to worry about.

That got me thinking though. I am the FIRST one to defend her receptive language, her comprehension. However, apparently I’m also the first one to talk about heavy things in front of her and just assume she was too busy being a kid to notice. Not true…..apparently.

Fast forward a month. Her dad had a bad day at work. Nothing catastrophic, but a pretty tough day. I was relaying it to her grandma (her dad’s mom) one day when she dropped her off for me to take Ashlynn to school. Ashlynn seemingly oblivious, was playing on the curb and sidewalk, jumping down, climbing up, being a kid!

I took her to class and the kids have to “check in.” They get their name and place it under a feeling picture. Ashlynn ALWAYS picks happy. She is happy! However, today, she placed it under sad. “Ashlynn” I say, “you put your name under sad?”

“Yeah, I sad mommy” she said.

“You’re sad?? Why?” I asked.

“I sad for daddy…for his work,” she said.

I absolutely folded. What’s worse, I would have never known she felt sad about what I was telling her grandma if she hadn’t of “checked in” right after that.

Are typical kids able to express these feelings, or do they just stuff them too? Stuff situations they don’t understand, or is it because of Ashlynn’s apraxia? My mom made a good point that Ashlynn would have probably brought it up “out of the blue” eventually like she did her OT and letter concerns.

Maybe.

I don’t know.

All I know, is my child is so much more than you see, what I see, what anyone sees. A five year old shouldn’t have to worry about needing help for writing, or worry that her daddy had a hard day at work. It makes me wonder what else she worries about of which I have no idea.

I love this meme: “Don’t underestimate me because I’m quiet. I know more than I say, think more than I speak and observe more than you know.”

I will try to never underestimate you again, Ashlynn. You were born to move mountains.

January 13, 2015
Christmas 2014 updates

Christmas 2015! Ashlynn is now 5 years 2 months old. Last year, we hit so many milestones I had waited for, for so long, and I was happy, very happy. She could jump, ask basic questions, and tell us what she wanted for Christmas.

This year, I’m not sure if we hit any other major milestones for which I had spent so much time praying. However, we hit milestones for which I NEVER spent time praying, and that my friends, is even better.

I learned this year, that Ashlynn really is a leader and not a follower. Without language or motor skills, Ashlynn is forced to follow her peers around and play with what interests them. However, this year at our Christmas party, she kept asking to sing Christmas carols and she was front in center.

FRONT AND CENTER.

Rocking back and forth singing loud and proud. The Baskall’s are a family of singers. My brother, sister, and two nieces were all in choir. I wasn’t in choir, but I can brag that I have won some karaoke awards in my day ;), and I will say my dad had an awesome voice to accompany him on the guitar. Oh, and my husband was also a singer before he swore it off after his voice changed (but he can still sing). Could it be my daughter, the girl who struggled to say every sound and every word, could actually be a singer? Time will tell, but she’s pretty freaking awesome at it at five.

I learned this year Ashlynn just may be a crafter. My husband’s side of the family are very crafty, so much in fact, when I married him he told me he expected I would just fall in line. Um…not exactly. I have no desire to craft, though I think those who do and what they make are AWESOME. However, my desire has become a lot stronger now that I see how much Ashlynn thrives with it. Santa bought her a whole bucket full of supplies: foam pieces, stickers, glue, tape, buttons, glitter, and tissue paper. She has spent the last two days “crafting.”

Every parent I think imagines what their child will be and do when they are born, and I’m pretty sure it’s based off of what THEY did or have done. I definitely had visions of an awesome basketball player, a beautiful writer, an expressive dancer, an angelic singer, a fierce debater, or an amazing orator. Can you guess those might be MY interests?

I’m pleasantly surprised though to realize my daughter just may be the best cook this side of the Colorado Divide, or the Martha Stewart of the Rocky Mountains. These aren’t my passions, but to see they are hers is something so much more awesome. To see my daughter has passions outside of any of my expectations lets me see HER. Something I mourned for so long seeing, since she couldn’t really talk to me and her motor skill difficulties made it hard for her to manipulate anything.

Who knows? I have no doubt though that the girl who has apraxia of speech, a disorder that affects speech AND prosody, the MELODY of speech, may turn out to be one badass singer. I mean, the girl sings a mean Jingle Bells and Rudolph the Red Nosed Reindeer, just saying. I wish I had a video. Or, the girl who struggled to coordinate both hands together, just may be one amazing cook.

I see my daughter more each year. This Christmas was pretty great.

Oh! I also confirmed my suspicions she has an incredible visual memory like her daddy. Girl could remember and would tell us every spot Gimbel our elf had been in this year.

Aside from apraxia though, other issues are more glaring this year. Her SPD has really kicked in and she CONSTANTLY had her hands in her mouth or anything else she could find to suck on. Family events become so overstimulating that she has noticeably more meltdowns than normal. In fact, she may have had more tantrums than my two year old. 🙁 These incidents are still hard to watch. They still fill me with worry and with a touch of sadness. Sadness though, that carries hope.

We got Ashlynn a dollhouse this Christmas to work on imaginative language, something she lacks. I knew it was a good purchase though when I heard her mimic hours later something I had modeled earlier, “oh how lovely it is outside.” My husband, amused clarified, “Is it lovely outside?” Yep….that’s what she said.

He also got her a scooter to help her work on her balance at a recommendation from his brother. Sure enough, yesterday she couldn’t even hop forward on it, but today, she could quickly balance while taking little hops.

That’s the thing though with special needs. We buy our toys based on how it will help our children with their deficits, and that still leaves me kinda sad.

However, Ashlynn’s not sad. She’s amazing. She perseveres. She always perseveres, and you know what? A person who perseveres is a successful person.

December 28, 2014
Can you have a talent if you have global apraxia?

That question in the subject line. Yes. I’ve asked it. Many times. To whom I am asking, I don’t really know, but my fear is that the answer to my rhetorical question is…..No.

I never told anyone this, though I was probably hinting when I would ask my husband, “what do you think Ashlynn will be when she grows up?”

It’s not that I don’t believe in Ashlynn. Oh the farthest things is from the truth. However, when I am forced to think about global motor planning issues, what on earth could you be truly “talented” at?

But then that got me thinking. What is talent? I was always taught our talents are God-given gifts. We are naturally inclined to be good at some skills than other people. I mean, who can doubt some people are simply better at singing than others, no matter how much they practice?

However, ,who can also deny that some people hone a skill, and become better at it simply because they practiced and worked harder than maybe someone who had the talent, but never utilized it.

Ok, true but when you have global motor planning issues, and NOTHING comes naturally or easily, does it still work the same way? Practice and work harder and you will be good at it?

I had a mentor who used to tell me to look for the strengths in every child, because every child has them. At the time I was young, and kinda absorbed her words and dismissed them at the same time. Oh of course. Every child is good at something.

Until I had Ashlynn. Then I started thinking about this a lot. What was Ashlynn naturally good at? She has trouble with everything that involves any sort of motor skill. Of course even Kermit would say:

I consoled myself with the fact that she is kind. The kindest child I know in fact. She is happy, she is social, and she can connect to people without words. She really is that good. Yes, I would think . That MUST be her talent. That is until I talked to an adult with her disorder, and he said that very quality in fact turns out NOT to be valued by society. That talent caused him to be used and taken advantage of. When he saw a person begging for money, he genuinely believed they must have needed it, until he got burned and taken for all of his bank account. “Some talent,” he had thought.

I’m on Winter Break this week, so I have more time to just “be” with my kids. My mother-in-law watches my children when I work, and she happens to be a very good baker and cook. Actually, she happens to be quite talented at basically everything crafty. I have never been crafty and really never had the desire. However, Ashlynn is very crafty despite all of her limitations. In addition, she absolutely loves cooking and baking. Fortunately she has a grandma with ample amounts of patience who loves cooking with her.

I came home from work one day to see Ashlynn and her Grandma covered in flour from an “accident” where Ashlynn turned on the blender before they got the lid on. I’m glad it was her grandma and not me, because sadly when I come home from work my patience is very thin and I’m not sure I could create a learning rich environment such as this moment.

On break though is a different story. As a said, I had Ashlynn bake muffins with me. She impressed me with her egg cracking that she did all by herself. She measured out the baking soda being careful to slide it along the top to make it “smooth” as she said. She carefully measured the water to line on the measuring cup that I asked her fill up, and methodically spooned out all the pumpkin from the can. My son tried to “help” too, but quickly became bored and would just pop in and out. Not Ashlynn though. She stayed with me to the very end. I started thinking about talent again, and I ran across this quote:

I’ve decided that talent may include your natural God-given gifts; however, true talent is born from passion and determination. Ashlynn has those in spades. Plus, the only thing Ashlynn has to overcome is motor planning. Once she masters the motor plan, she has mastered it. Plain and simple. Talent doesn’t seem to be so important anymore, and I know my husband’s right when he answers me,

“Ashlynn will be and do whatever she wants to do.” Just look at that smile!

Ashlynn not yet two years old making scrambled eggs with Grandma.

December 23, 2014