SLP Mommy of Apraxia

Tag: Apraxia journey

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
SLPMommyofApraxia Top Posts of 2014

Graphics by MyCuteGraphics

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I initially started blogging as a writing outlet to express my feelings; however, it is has turned into so much more. I’m so grateful for everyone who emailed me or reached out to tell me their story this past year, and look forward to connecting with many more.

Here are my top ten viewed posts from 2014

1. Interview with Sharon Gretz, founder of apraxia-kids about her journey with a son who has apraxia and what parents should be seeing in therapy: Read here

2. If we don’t say we’re scared, does it mean we don’t have fears? Read here

3. Apraxia is elusive, even to professionals. Read here

4. Interview with Tonya from Therapy Fun Zone about motor planning issues related to gross and fine motor skills. Read here

5. What is DTTC therapy for CAS? An interview with Dr. Ruth Stoeckel from the Mayo Clinic. Read here

6. The Day I realized Apraxia was a blessing. Read here

7. What is your future like when you have global apraxia. Read here

8. Apraxia: How does that affect her vision/hearing? Read here

9. There are no easy answers, only tough choices. Read here

10. Apraxia Intensive Training Institute aka Bootcamp. Read here

In case you missed it. These are 10 of my personal favorites

1. Did I cause her apraxia? Read here

2. Just Love: Read here

3. She really does have special needs: Read here

4. People will forget what you said…but will never forget how you made them feel: Read here

5. I saw the light go out in her eyes: Read here

6. My apraxia star sparkled at her first Walk for CAS: Read here

7. Kids say the Darndest things….unless they don’t because they have CAS: Read here

8. Working our way out of the apraxia tunnel: Read here

9. Wait, is she the ……R word?: Read here

10. Oh my goodness…Ashlynn turns 5: Read here

December 28, 2014
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