SLP Mommy of Apraxia

Category: Apraxia Awareness Day

The Rise

I have Ashlynn on a new game plan. We had to take a break from her private speech because of unforseen financial issues in our life, but now we are back and better than ever.

She’ll be seeing her awesome private SLP again on Tuesdays (who just happens to be my mentor, friend, and speech mom), and then Wednesdays we have insurance finally paying for 20 sessions, which is not to mention the two sessions she gets at school.

Last night my husband took her in to the new SLP and she was given language testing. Knowing I would never be satisfied with his summary, he prudently told the SLP to call me personally. I had already emailed, called and left messages (oops), but hey. I need to know this stuff.

Well, tonight she called. She was lovely actually. Experienced. Moms of kids with disabilities will totally feel me when I say, “I instantly had a good feeling in my gut about her.”

She told me she tested Ashlynn in language. I was anxious to hear the results.

Before I get to that. Let me set the stage really quick. Two years ago, Ashlynn was tested at school as part of a re-eval. The ONLY area, and I mean the ONLY area in the average range was her articulation skills, and even then, it was barely. Language testing was no exception. The one area kinda close to at least low average was a the receptive vocabulary test where she was to point to pictures depicting certain vocab words. It was STILL slightly below the average range.

I was devastated. Despite so much work at home, Ashlynn’s expressive and receptive language skills were tested to be significantly below the average range. Beating apraxia at that point seemed pointless. When Ashlynn actually spoke, most people could understand her now, but her language development was so delayed she still hadn’t really found her voice. She spoke in scripts she had been taught. Sentence formulation consisted of scripts she’d practiced in therapy. If you have any idea about apraxia, then you know how jacked up it is to wish your child *just* had apraxia, and you might have a greater appreciation of just how damn freaking hard that sweet little girl has to work.

BUT

Fast forward to today. The day I talked with this new SLP. Ashlynn scored a standard score of 90 and corresponding percentile rank of 25 on the picture vocabulary test!! DEAD average for receptive vocabulary skills. My heart was leaping out of my chest.

With a sympathetic and somber voice, she told me Ashlynn had just barely squeaked in the average range for a measure of relational vocabulary, which is telling how two things are alike. My heart started singing and I think I took her aback. I had to hear it again. Wait, she scored in the average range for what?? Tell me again. Well, it’s the low average range, borderline really, but yes……

I zoned out. I checked out and started cheering. OMG. I work in the schools with her school SLP and this is what they have been working on!! It’s working!! She’s doing it!! We are climbing!! We are RISING!! We are OVERCOMING!! I texted her school SLP.

“Private speech gave Ashlynn the TOLD and she scored in the 25th percentile for picture vocab and 16th for relational. That’s ALL you. Thank you for working with her. I can’t believe it!”

Her response was golden: “I believe it! Ashlynn needs the gift of time to develop and mature. Her brain is working hard right now but it will get easier and better! Proud mama time!!”

Um…people..cue the waterworks.

It took me some time, but I finally found Ashlynn’s village. I can’t help her overcome on my own, but I found a village who not only believes she can, but is helping her to do it. There are so many working parts. There is general ed, and special ed. There is school speech and private speech. There is private OT and school OT. There is physical therapy, extracurricular activities, and a legion of family members praying for her.

Most importantly though, there is Ashlynn. She is a fighter. She doesn’t look like one, but she is. That face is deceiving. She has this understated determination, this quiet ferocity, and this unceasing resilience.

It’s good to look back and see what we have conquered. At times though, it’s too overwhelming to look up and see what’s left ahead. So in this present moment, we will look a few steps in front of us and as my dad always says, “just keep your head down and working,” and one day, we will reach the top.

March 9, 2017
Our kids need to meet others just like them.

This 4th Annual Apraxia Awareness day (it was trending, did you hear?), I organized a fundraiser at a local Chipotle to benefit the Walk for Childhood Apraxia of Speech. I have a HUGE goal of 30K. The walk last year made 16K, so basically I set this goal to double that.

I’m probably crazy, but I set that goal with good reason. That number ensures a visit for a free parent seminar given by the executive director of apraxia-kids.org (CASANA). I was the lucky recipient of her visit one year and it was amazing. The previous walk coordinators had amazing connections and one coordinator raised thousands of dollars just from his connections. I don’t have anywhere near those connections, so I’m trying to do more fundraising activities to help raise money and get us closer to our goal.

We had a really good turnout yesterday, with around 50-60 people gathering in South Denver. One mom even drove close to an hour and half to be there, because she wanted to meet other parents in her shoes going through the same thing. Social media has made it so we can connect with other parents and families, but of course, there is something different to have a face to face connection with a person who truly “gets” you.

Last night was interesting, because the kids with apraxia seemed to become instantaneous friends. You could honestly not help but notice them gravitate to each other and form an immediate kinship. They were holding hands and had created their own “walk for apraxia” by walking continuous circles around the tables. There was chatter, but there was more laughter, smiles, and pure happiness.

Ashlynn holding the 2016 Colorado Proclamation declaring May 14th Apraxia Awareness Day in Colorado

I was surprised to see a bossy side to my daughter Ashlynn. Most girls her age have a bossy side, but Ashlynn is always the follower at school. She has friends and is well-liked, but she is far from being a leader. You wouldn’t have known it last night. She was telling people to hold this hand and to walk this way. She was sweet and smiling of course, but still bossy. I told one young client of mine to tell her stop being so bossy. He looked at her and told her “no” through a smile, and she laughed and moved on, only to return again requesting him to follow her.

The mother of a second grade client came up to me and told me that her son listened attentively to all of the kids and had a look on his face that seemed to say “ohhhh, I get it.”

And that’s when it dawned on me. Here we all were, parents, networking with other parents. Happy to talk and chat to others going through similar experiences. An instant friendship is formed between the parents. Without saying anything, everyone seems to understand you so perfectly, and I realized…as I watched smiling face after smiling face, and small hand locking another small hand……that the KIDS had formed their instant connections too.

A famous actress Gage GoLightly shared a facebook post spreading apraxia awareness thanks to my friend and fellow apraxia advocate Michelle Leigh who discovered it on wikipedia and succeeded in bending her ear. Anyway, her post outlined how she grew up with apraxia and dyspraxia, but implored people:

If you know someone in school, or work who has apraxia, or dyspraxia- make today the day to reach out and just talk to them. Underneath everything in the end we are all just people. We all have our unique challenges and special qualities that make everyone incredible. Love and acceptance are what make this world beautiful. Reach out and be apart of the beauty.

I realized it’s important these kids meet other kids with apraxia. That they not only meet them, but get a chance to interact with them. We need it, why wouldn’t they? I love a quote by C.S. Lewis I reference frequently in my apraxia journey:

No one could deny the instant connection these children had. lt made me realize they need to get more opportunities to meet others who have the same disability. It was absolutely beautiful to witness. I wish I had taken more pictures. I probably only captured a third of the kids holding hands with each other.

I’m urging you all for so many different reasons to get out and support the walk, go to the walk, and participate in the fundraisers. It’s for so much more than raising money. If you don’t believe me, just look at the smile on your child’s face when they can also finally meet another and say without words, “me too.” As Gage said, “reach out and be part of the beauty.”

May 15, 2016
GIVEAWAY!! Apraxia Picture Sound Cards app!

Have you heard? Today is #ApraxiaAwareness Day and we are trending on Facebook!

To celebrate, Lynn Carahaly, creator of the Speech EZ program for apraxia agreed to offer THREE copies of her Apraxia Picture Sound Cards App! The giveaway starts today and winners will be announced May 29th, 2016!

Enter below for a chance to win!
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May 14, 2016
Here’s How to Treat Childhood Apraxia of Speech

Have you heard? It’s #ApraxiaAwareness Day and #Apraxia is trending!

In honor of all of the festivities, Margaret D Fish, author of “Here’s How to Treat Apraxia of Speech” is offering a free copy of her book to one lucky winner! Enter today and the winner will be announced next Saturday!

*Note: This giveaway is now closed*

Enter below! Good luck!

a Rafflecopter giveaway

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May 14, 2016
Why I’m angry and even more passionate as we approach the 4th annual Apraxia Awareness Day.

I love Apraxia Awareness Day, ever since I celebrated my first one when Ashlynn was new to the dx. It’s always a time of excitement, renewed hope and resolve, support, and community who comes together filling up facebook and my newsfeed with their apraxia fighters.

I’ve been honest and open about telling my own early experience with apraxia, which wasn’t much. I’ve been the first one to admit I barely learned anything about it in graduate school, yet earned my Clinical Certificate of Competence and was for all intents and purposes an “expert.” Such the expert that I missed it in my own daughter.

People, that’s a problem! I was a good student. I did my best to learn all the content presented to me. I still didn’t learn about childhood apraxia like I should have, although I should be grateful my graduate school acknowledged it. I just heard the other day that someone’s professor didn’t *believe* in it. Didn’t *believe* in it??? Like it’s some damn mythical creature?? Don’t put me in a room with that man, seriously. I will lose my shit.

Anyway, I digress. Tonight I was seeing a client, and her mom had a previous Early Intervention SLP throw out the word apraxia in a flippant way. She tossed the word around like it was a carefree beach ball bouncing around the pool, and it was only after mom had googled it some 6 months later did she realize apraxia doesn’t carry with it the carefree connotation of summer. In fact, it’s a serious dx in which some will never fully overcome. She expressed her concerns. The SLP wrote her back to just google apraxia and she would feel better. If you are anyone who knows anything about apraxia and your are reading this, you KNOW that googling apraxia doesn’t make one feel better. Better??? Are you kidding me right now?? If ANYTHING, googling apraxia of speech puts a parent on an immediate road to panic!

The mom was telling me that as much as she’s mad about the disservice done to her daughter, she was more upset about the potential disservice being done to children currently in the SLP’s care who have parents who might not look up apraxia and understand it for the serious dx that it is. I defended the SLP saying I might not have realized how serious the dx was early on in my career either. I stressed that THIS is the exact reason I feel awareness is so important and that we have to do our best to spread it where we can.

I left that session and returned a call from a client I evaluated a month ago. The mom was basically beside herself. Her daughter is being seen at a local (renowned) hospital and has been for the past 6 months or so. Her daughter was born pre-mature with a significant birth history. As fate would have it, or actually, if you know me, as *concidence* would have it, the NICU SLP ended up being her daughter’s Early Intervention SLP much later. This woman fell ill, but before she quit she told this mom that she suspected apraxia, even though the child was young. This mom did what anyone does, googled apraxia. What happened to her happened to many of you reading this now who googled it for the first time.

You started reading characteristics and a pit immediately formed in your stomach. The more you read, the more you saw your own child on those pages and the more scared you became. Fear and uncertainty crept in. You eventually try and look for success stories. You many find some, but you can’t find anything to satisfy you. You may cry. Eventually though, you recognize you are the expert on your child and you are going to get them help no matter what the cost.
It was after this that this mom found me and drove 2 hours and paid out of pocket for an evaluation. She had actually said she found my blog, and her daughter sounded very similar to mine.

As I started the evaluation, this girl actually reminded me of MY daughter.

Even though the girl was young at 2.5, she cooperated fully with a speech articulation test and a motor speech evaluation. She had ever single dx marker AND sub-marker of apraxia. I could literally transpose my awareness day article I wrote for ASHA for Apraxia Awareness Day and she fit every, single one. Oh, and FYI, to be dx with apraxia, you DON’T need to be dx with every single one! Forget me and my writing though. How about the ASHA technical report. Yeah, she fit all those too.

Anyway, the mom almost cried and said incredulously, “so you believe me?”

I felt so bad. This poor mom. She knew more than the professionals treating her kid. She had tried to tell them what her daughter did at home, but she always felt unheard. That is bullshit. A mother is an expert on her own child. Professionals need to LISTEN to the mother. I’m not saying dx because the mother said so, but don’t dismiss a mother’s concerns or reports.

Anyway, I wrote my report. I didn’t even write suspected Childhood Apraxia of Speech like I normally would when I evaluate a 2 year old. It was THAT obvious.

Not only did she have the top three markers:
*Inconsistent errors
*Difficulty with co-articulatory transitions
*Disordered prosody (in this case, equal stress patterns on the few two syllables she had)

but ALSO
*vowel errors
*tendency to centralize a vowel to shwaa
*oral apraxia
*feeding issues
*higher receptive than expressive language
*groping for sounds and words
*co-morbid fine and gross motor delays
*no babbling
*pop out words
*loss of words
*low tone

Anyway. My report was so thorough anyone who read it would at least be compelled to treat it as suspected CAS. Right?? Right??

WRONG

That was the phone call. This mom had given them my report hoping that even though they made her feel like SHE was crazy, they would read a report from an SLP with expertise in the area who has a DAUGHTER with it too, and help her.

NOPE

“I can see what’s she’s saying, but I still don’t think it’s as dire as she made it seem. I still don’t think it’s apraxia,” said one SLP.

Mom is defeated. The only thing keeping her there is basically no other options, but she’s about to leave. I was livid.

I AM livid.

Okay, this isn’t ego on my part. At this point, I’m beside myself that if these TWO SLP’s can’t even recognize it’s one of the most obvious cases I’ve had lately, how is this ethical?? How do they read my report listing EVERY dx marker, and still remain firm her speech will come and it’s just because she was premature and has a language delay? Mom is going to leave, but I feel like something else needs to be done for all the other potential kids they will miss.

Why, WHY would they at the LEAST not say they disagree but would treat it as suspected apraxia?

How is this still happening? How after ALL the freaking work CASANA has done, disseminating information, funding research, awareness efforts they have headed….HOW is this STILL happening??

I’m sure I’ll be in a better mood Saturday (or I better be since I’m announcing all my giveaway winners), but I’m mad right now. I’m mad because for all we seem to do, I still hear stories like this. It’s not okay. I don’t care if it a rare disorder. I….DON’T….CARE. If you are an expert in speech, the experts in speech need to know what they are doing or refer on!! Heck, I”m really good at stuttering therapy. I have a bunch of stuttering continued education, but I would never hesitate to refer a child on to an expert who sees it EVERY DAY if a mom had concerns. In fact, I have recently!

I’m just shaking my head right now. If I’m an SLP and I read a report from an outside SLP who specializes in a certain area, I would not roll my eyes. I would make sure I knew the facts. I would make sure I learned the facts or consulted others. I consult others all the time!

My mentor Deborah told me early on, if I ever hit a stage where I know it all, I need to retire. Best advice ever. Her point of course is that we never know it all. There is always more to learn.

I’m angry because a mom went through this once.
I’m angry because a mom and child are going through this again.
I’m angry because a mom and her child will go through this in the future.
I’m angry because for every awareness success story I feel like I hear double the failure.
I’m angry because it’s not just professional, it’s personal.

You know what? For the 4th Annual Apraxia Awareness Day, I want MORE than awareness. I WANT change. I want SLP’s to educate themselves and if they aren’t sure, I want them to put aside their ego and consult someone.

Is that too damn much to ask?

May 10, 2016
Giveaway!! Customized apraxia necklace from handmadelovestories

I saw this necklace on another blog and I loved it. When it was time to get a gift for my daughter’s SLP, I went to this shop on etsy and customized the perfect piece!

Melissa from HandMadeLoveStories agreed to donate one to my raffle to support apraxia awareness day! Enter below and if you are chosen, you can tell me what you would like it to say and I will pass on the order to her! The winner will be announced on May 14th!

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May 4, 2016