SLP Mommy of Apraxia

Tag: daughter with apraxia

What’s in a number? Why I refused cognitive testing.

What’s in a number? I refused cognitive testing today at Ashlynn’s school. Despite me saying I was so sure about not doing it two months ago, I still agonized over the decision until today. Today, the psychologist and myself finally had a chance to chat. She has 20 years of experience and has been working with preschool kids exclusively. She sounded smart, thoughtful, and honest.

As I ran through my list of concerns to her, I didn’t realize how emotional I still am about it. The more I talked about how I don’t feel a cognitive test would be valid right now and why, the more upset I became. I really have no idea why. Maybe I can process that another time. I just know the more I made a case for myself and Ashlynn, the more I realized I already knew my decision was “no.”

The woman had to agree that her global apraxia (s) would impact performance, which in turn would impact the score “the number,” I thought to myself.. She also reminded me I might get a score (number) I don’t like.

It all comes back to that damn score and my post outlining concerns about this testing: Accuracy of IQ scores with global apraxia.

I know there are professionals who would read the testing and use it for programming, but I also know there are professionals who go straight to that “number.” They want the quick and dirty FSIQ, full scale IQ, and make a judgement on a kid just from that. People working with a child who will make a blanket judgement about their capability (or lack there of) based on A NUMBER. I’ve seen teachers and even principles ask for that number, and did they read the report? Did they read all the disclaimers or qualifying statements? No. Why would they do that? They have that number. They know what the kid is capable of.

Well that’s not happening to my kid.

She is not a number. She is not a score. Maybe one day, probably one day in the future I will consent to that particular testing, but today is not the day. Her body isn’t yet cooperating enough to really show what her mind knows.

I could be wrong, maybe I’m being sensitive, but I see them looking at me like I’m in some sort of denial. I can’t explain it, but my friend Kim, an SLP in NY who also has a kiddo with global apraxia summed it up best. “They see her as more disabled. They want to show you.” And that is exactly right. They want me to see a number in black and white as some sort of proof that she is more disabled than I believe her to be.

There’s just one problem. They don’t see what I see. Ever since Ashlynn started talking, what the school saw lagged behind what she was doing at home. Ashlynn said her first word “hi” at 1 year and said it consistently and on demand. When she entered school at 3, it took her half the year to utter it to anyone . The SLP had to work on that, and finally a note came home that said she did it without prompting. I was happy she was doing it at school, but I mean, this wasn’t progress to me. She already said hi without prompting.

That’s just the first example in what would be many.

“She’s counting consistently to 5!” I smile. She’s been counting to 20 (skipping 13) for months now.

“She knows the letters of her name!” I smile. She can find or point to most of the letters when we are home. At least the SPED teacher’s assessment was more accurate, but it still isn’t what Ashlynn shows here at home.

“She’s talking to peers, but still doesn’t have a lot of pretend play.” She plays pretend games with her brother everyday at home. Another half smile from me.

The list goes on. Bottom line, I always say a mother is the expert on her child, and she doesn’t have to be in the educational field. We KNOW our children. We live and breathe them. If Ashlynn has yet to show what she actually knows in 3 years of being in school, am I really to think she will perform accurately on a standardized, formal assessment??

On the consent form the SLP wrote “mom does not agree to cognitive testing.” To make it clear, I crossed that out and wrote “mom refused cognitive testing.” I don’t know what got into me. I guess my claws came out. I am refusing a number. A number is just a number. Now let’s get busy helping her reach her potential.

April 6, 2015
The day the page went blank.

I can’t remember a time since I learned to write that I stopped writing. I was the girl with diaries, journals, writing pads, and notebooks filled with writing. Obviously now, I continue to write. There was a time though my writing was noticeably absent. I recently scoured my notebooks and old blogs searching for what I wrote around the time of Ashlynn’s diagnosis and came up empty. I had many poems celebrating her birth and first year. One of my last poems was this:

Angel

They told me me you were my baby girl
as you cried hello to us.
I believed them at the time
admist the chaos and the fuss.

They told me you were my baby girl
and when I took you home,
I would gaze upon the sweetest face
I had every yet to know.

They told me you were my baby girl
and I would gaze at you at night.
I would watch your lips
flash smiles radiant and bright.

They told me you were my baby girl
and I have so many flaws;
and you are perfect in every way,
they must have got it wrong.

They told me your were my baby girl
and my baby girl you will always be,
but I know the truth and the truth is,
God sent an Angel to me.

I stopped writing shortly after this. This was the time during her diagnosis. I didn’t start again until a year later when I started this blog.

I guess I could brush it off and say I was simply too busy. After all, I WAS working full time and then coming home each night to continue speech therapy with her.

That’s a lie though. As I’m three years out now and I’m meeting parents who are new to the dx, I realize the devastation and the heaviness was to much for me to even write. To WRITE. My outlet, my creative platform, my emotional release. I wanted to hide it all and be strong. I had to push forward, but as my friend Kim has said, there is always an underlying sadness threatening to break way at unexpected times. A mix of guilt, pain, and desperation to help your child that can only be released through tears. Tears I fought back.

As I met a mom last Saturday, she broke down three different times. She seemed embarrassed to say she hand’t told anyone her son has apraxia because she doesn’t want him labeled. I totally understood what she was saying. If you read my poem, I would suspect it’s pretty universal. We see perfection in our child and our children, and a label means other people see something less than perfect. It is very painful, because despite any imperfections, in a mother’s eyes, our children were “fearfully and wonderfully made.” Psalm 139:14

I’m glad I started writing again in 2012.

My story, OUR story, has been one of success and triumphs. Yes it is still of struggle, but through the struggles emerge victories, however small. Yes there is still pain. Gut punches from reading reports in black and white, but there is also progress and celebrations I might have taken for granted. There are now friends I never would have met, people I never would have known, and admiration for a little five year old girl that might have never been as great. If you talk to any mother who has a child with apraxia, they will no doubt agree that child is their

Hero.

March 16, 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
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
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