SLP Mommy of Apraxia

Category: global apraxia

Apraxia Walker Spotlight: My renewed faith and hope in my Shining Star by Jenny Boncich

It goes without saying that all my babies are amazing and wonderful! It’s true. When I delivered my 3^rd child, I didn’t know it at the time, but I had just given birth to a star! A shining STAR! I know, I know, every woman believes her child is a star! But the kind of star I am talking is pretty special. My son Mark was born with Childhood Apraxia of Speech (CAS). CAS is a neurological motor planning disorder. In a nutshell my son’s brain isn’t able to send the right messages to his mouth, lips, cheeks, jaw, or tongue; so he has great difficulties in executing intelligible speech. His words are understood by only about 65% of unfamiliar listeners. In addition to coordinating his speech, our son also has great difficulty globally with his body movements. That means he struggles with coordinating all of his body, and that just plain SUCKS!

At about two years old I noticed the beginning of Mark’s symptoms. No babbles, not walking, etc. I turned to our pediatrician and as much as I loved that man he didn’t have a lot to offer. A doctor is supposed to know EVERYTHING! What the heck was I to do?? Oh yeah… GOOGLE THAT S*$%!! I surfed the web hour upon hour upon hour. I was in the fight or flight mode. I needed to put on my suit of armor and begin the good fight! In doing so, I stumbled upon CASANA. Thank God I did! As I began reading the family start guide I just kept nodding, “yep, that’s Mark. Uh huh that’s Mark. Why yes….that’s my kid!!!! I took all the information I had devoured and went back to our pediatrician with the diagnosis. He was as humble as he could be and said, “You’re onto something here!” He even let me wear his stethoscope for a few minutes, as it was I that delivered the diagnosis (I’m just kidding). Over the next couple of months, together we started making the necessary appointments to have him professionally diagnosed by starting Speech Therapy and Occupational Therapy.

What got me through those first few years were other parents of children with apraxia, my rock solid husband and friend, and CASANA. It felt good to know I wasn’t alone in this journey. There were other families out there enduring the same things. What helped me get through this were other Facebook groups. I became educated and encouraged. It wasn’t long before my family began participating annually in CASANA’s awareness walk. I really looked forward to CASANA’s annual Apraxia walk, as it was a time we celebrated Mark and all the hard work he done throughout the year. We walked with our family and friends and it felt GREAT! It was Mark’s day to SHINE like the star he is.

However…..

The years have continued to come and go. My son is now 11. We have climbed many MOUNTAINS. We do live in Colorado so that isn’t too amazing. However,

I’m not talking about a 14’er. I am talking the things most of us parents of typical children take for granted. Crawling, walking, babbling, cooing, coloring, writing, potty training, tricycles, 2 wheeled bikes, blowing bubbles, buttoning, zippering, tying shoes, play dates, sports, and singing. The list is literally ENDLESS! Every single thing has been a CHORE for my child. And I began to get really pissed off about it. It began to sink in that this was a more severe diagnosis then that of most children. I saw many of the kids that I first met on walks beginning to resolve the issues they had with Apraxia, while my son continued to have such slow progress. It all became too much. Denial after denial from insurance companies, and then ultimately thousands and thousands of dollars in private speech therapy, battle upon battle in conference rooms during our annual IEP meetings fighting for what seemed to be so obvious in what he needed and deserved, the constant stares from strangers, one even asking, is he death?” (Wanting to say, “No, he’s alive…oh, did you mean deaf?”) But instead answering kindly, “No he’s not deaf but we use sign language for expressive communication and…..blah…..blahhhh, blaaahhhh!”

UGH! “Make it all stop!” I would scream in my head! It was obvious that the once very optimistic part of me gave into the GREAT APRAXIA MONSTER, and I became a very cynical, defensive and angry woman. I actually withdrew from the people and things that once made me feel like we were not alone. Last year, I purposely and proudly boycotted the Annual Apraxia Kids Walk. There take that! I am done. I’m going to take our toys and go play somewhere else. Very immature, I know.

That is until I was fortunate enough to come across a very well written blog from a woman I had sat next to in one of CASANA’s conferences. The one in Denver a couple of years back. I remembered her because I thought how LUCKY her daughter was in having a mom who was an SLP!! If you’re going to have an Apraxia diagnosis, how blessed to be born to a mommy who knows how to help you from the get-go!

I began reading Laura’s blog about how she and her daughter Ashlynn got to go to a book signing. The book was about a woman wrestler. A BEAUTIFUL woman wrestler, Ronda Rousey, who not only wrestled in a ring with opponents, but that also once wrestled with WORDS! The book was written about a famous person. And this person once had APRAXIA too! As I was reading the blog, I could literally feel the excitement and passion Laura had experienced in her meeting with someone that once had what our children are struggling with. She overcame Apraxia, and then went on to lead a very successful life….despite her early struggles with Apraxia.

And that’s when it happened.

Because of this one very simple, loving, blog I began to cry. TEARS? Yes Tears! And lots of them! Happy ones. Because it set in motion a familiar feeling in my stomach, like that of a roaring fire. A roar that made this mom want to start fighting the good fight again! That post not only helped me regain faith, it also restored hope in the fact that my son will someday resolve his struggles with Apraxia.

Thanks to Laura’s enthusiasm spilling over and onto me, I am VERY proud to say, “WE ARE WALKING” in CASANA’s walk this September. We have invited our friends and family to once again rally around our SHINING STAR and make the day all about him. We look forward to celebrating his amazing resilience, stamina, and success. I can’t wait to get TEAM MARK THE SHARK back on the track… in oh so many ways!

July 7, 2015
Speaking in scripts with a story in her eyes

Thanks to funding from Small Steps, I have Ashlynn back in therapy with her private SLP, who is also my mentor and now friend. The other night she was updating me on her progress and what happened in the session. I take my daughter to her house, so occasionally her husband or dogs may walk by and apparently distract Ashlynn. She was remarking on Ashlynn’s ability to hold a pretty good conversation. After she went through a communication exchange Ashlynn had with her husband, I commented that everything Ashlynn said was a script she had been taught. To a new communication partner, she sounds very adept, but to those who know her, the script rarely changes.

I went onto say, that though Ashlynn speaks in sentences now, her speech is still predominantly in scripts because crippling word finding deficits and motor planning continue to impede her ability to effectively offer up new and novel information.

I wrote the other day that I wanted a professional to know Ashlynn like I do, and I know my mentor is the one. I know because she said this,

“Yes, it is remarkable really, and not something I think many people, including other SLP’s would understand had they not witnessed her development themselves. To think Ashynn has been taught everything she says is almost unbelievable even to me.”

Yes! Yes! She gets it!! She sees how remarkable Ashlynn is!! Ashlynn does put some novel things together, but they are usually already scripted phrases she has learned and then she may combine them with another scripted phrase.

SLP’s usually talk about a “language explosion” that most kids have. Some kids have it late, thus needing speech, but most all will usually experience it. I remarked that Ashlynn has never had a language explosion. Never. Everything she has said she has worked for.

I responded that Ashlynn has always learned, from a young age, to grab onto the scripts that would get her the most bang for her buck socially. By 1 her first word was “hi” and she could use it to grab anyone’s attention. By 3 I taught her to say “watcha doin?” which has since been refined but to which she still uses and has actually overgeneralized now to the point that she gets stuck on it and will say it over and over just to keep up the conversation. In her last year of preschool, the social worker really worked with her to move from parallel play into interactive play by teaching her to say “you want to play with me?” and “do you want to be my friend?” Once Ashlynn picked this up she was off and running and uses it now frequently in a variety of settings.

My mentor went onto say that she had asked her about a recent camping trip we had just come back from. When she mentioned camping, she said Ashlynn’s eyes lit up and danced. She said she wished she could have been able to get inside her head because though she could see Ashlynn’s eyes dance with stories, Ashlynn took a lot of time before settling on “I ride my bike.”

“Another script,” I said.

That’s when the SLP said, “Well, and doesn’t that speak to her cognitive ability? Being able to pull out and get the scripts that get her the most bang for buck and her ability to look like an effective communicator to a new partner despite only having access to pre-existing scripts in her motor plan….that is really quite remarkable.”

I smiled. Yes! Finally! Yes it IS remarkable. It DOES speak to her cognitive ability but also her amazing resilience, ingenuity, and motivation.

One day I know her word finding difficulties will improve as well. We work on naming and word recall daily. However on days when she was with her grandma, she will still call me “grandma….mommy” and on days she has been with me she will call her grandma “mommy…grandma.” She is learning to self-monitor and that is good, though that also speaks to the cognitive ability you MUST have to do these tasks. Can you imagine?

First she has to conceptualize the thought, then she has to have the speech motor plan for it but also the word finding. If she wants to speak on auto-pilot (like we all do taking it for granted), she runs the risk of saying the wrong thing, like calling me grandma even though she knows I’m mommy……or saying it incorrectly (speech sound production), so then she has to monitor her speech and then correct it, but remember, correcting mean having to plan, program, and then re-try accurate execution of what you wanted to say.

How exhausting is that? Is it no wonder our kids get frustrated? Tired? Discouraged? It’s no wonder to me; however, what is even more of a wonder to me is Ashlynn never gets frustrated or discouraged. She’ll laugh. She’ll try again. She NEVER gives up. She is insanely motivated, and for that, I am thankful. So thankful. I pray she never loses that. I pray she will be the communicator she desires to be, the friend she desires to be, and whatever person she desires to be. I pray I’m doing enough, but for now, I’ll just say a prayer of thanks for the hope that another professional finally sees a glimmer of what I see.

May 28, 2015
Ignorance is bliss, but Awareness is POWER

Ignorance is bliss. Yes, yes it is. I can tell you this from personal experience. If ignorance is bliss, what is hindsight? Oh right, yes, I know. Hindsight is 20/20, meaning looking at events afterward seem so much clearer than in the moment. That much may be true.

I was going through some old home movies. Our 10 year wedding anniversary is coming up, and I guess I was feeling nostalgic. Of course, there were other videos in the pack too. A lot of Ashlynn, our first born. Everyone always remarks how they had so much time to document everything with the first born, and Ashlynn was no exception. I waited until she was 2:11 to get her evaluated, partly out of pride, partly out of denial, and partly out of a love greater than anything I had ever known.

Tonight my husband and I watched a Christmas video we had rolling in December of 2010. Ashlynn would have been 1 year 2 months. At the time, we are two young parents happy in love, and giddy with our baby. Dear Lord she was perfect. I remember that night. Everything about her was perfect to me. I remember a picture of her I posted on facebook, bow in her hair, wide eyed, wondrous, in front of our tree….and I had said “everything about this picture is beautiful to me.”

Looking back on it tonight, I see things I didn’t see before……I didn’t want to see before. I see her flat head. Yes I saw this before, but it was really noticeable. I remember desperately trying to do tummy time with her, and her hating it, not being able to push herself up, and she felt like she was suffocating. I tried everything to keep her off her head, but delayed gross motor milestones meant she was frequently on her back.

My husband remarked on the silence. If you were not looking at the video, you would have no idea a 1 year old is present. Her silent voice was deafening to us now. Especially since we went onto have a son, a VERY loud son.

At 14 months, she was pulling herself up with the furniture, first starting on the top part of her foot and then rolling it to stand in position. She was floppy. She fell….. A LOT. In fact, there was a bruise on her temple. “She’s just so little” my husband would say. We didn’t see the apraxia then, glaring at us now.

The video panned to a few later random events. Each time her daddy would walk in she would smile the biggest smile and give a shaky closed fist wave. Back then we saw a a baby girl in love with her father….today we saw a baby with global apraxia. I thought to myself though…oh how ignorance was bliss. How we doted and awed at her. She still was nothing short of perfect.

We saw a video of her self-feeding scrambled eggs. She would shove them in closefisted ( a delayed milestone we realize now). She became red at one point, wide eyed, looking panicked. In the video I playfully asked if she was pooping. I had no idea. As I sat watching, my husband said it for me….”she’s choking.”

Yes, she was choking. Gotta love that oral apraxia and the fact she never had an oral phase or chew to her swallow. 🙁

I thought she was adorable though, and went on to praise her and tease her as only a mother could.

She’s come so far. Her re-eval revealed articulation skills in the low average range which is incredible. With apraxia awareness day upon us, I shot a video of her. Granted she was speaking on the spot with a script, but I always say the apraxia is almost resolved, and it is…I think. But with this format, as I watched her, I saw every single diagnostic marker glare at me again as I watched her sweet face on video.

In fact, prosody, or the melody of speech is one thing I have always thought she was amazing at….but when asked to do a script, I saw….the slow pauses, inappropriate stress patterns, decreased intelligibility with longer phrases…….and I have to tell you it hits me like a ton of bricks. My entire career now is based on working with kids with apraxia. I know what I am looking for and I see these things on a daily basis. Seeing them in my own child thought still has me blind….until I see her on video.

My message this apraxia awareness day is to remember, every child is “fearfully and wonderfully made” in their mother’s eyes and ears, even if that eye and ear is now professionally trained to see and hear apraxia. My message is that despite so many odds against her, I cannot help but believe the world for her. That despite so many barriers, I cannot help but believe she will not knock those down too, like all the ones that have come before her.

My message on this third annual apraxia awareness day is to tell you that every mother sees nothing but perfection in their child, and they need YOU…the SLP….the OT….the PT….the teacher…..to believe in them too. They need you to know this because apraxia can be overcome. It can….. but they need a dream team of therapists and teachers. We NEED you. We NEED you to know that frequent and intense therapy does and CAN make a difference, but we don’t want to have to fight you for it at every IEP. We NEED you to realize it too.

That’s why awareness is so important.

Our children may have apraxia, but it DOESN’T have them….especially with your help.

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May 8, 2015
Anything but Silent book review and giveaway!

I’m continuing on with Day 4 of giveaways leading up to Apraxia Awareness Day on May 14th! Today I am reviewing the book ANYTHING BUT SILENT by Kathy and Kate Hennessy. Kathy Hennessy is the mother to Kate who has pure CAS and another son Andy who has global apraxia and SPD.

The book rotates chapters from Kathy’s point of view to Kate’s point of view. First of all, I just have one piece of advice: if you are a parent or professional

READ THIS BOOK.

READ THIS BOOK!

Yes, people. It’s that good. I read it in one night! I couldn’t put it down. I laughed, I cried, but mostly I related.

It starts with the diagnosis:

“I decided that day I could beat myself up about the unfairness of life or I could educate myself and help my daughter move her own mountains.”

I could not have said it better. This is EXACTLY how I felt. How I feel! Kathy wasn’t kidding either. She’s now the education director at CASANA (apraxia-kids.org).

It captures the need for others who are going through the same thing:

“What I needed at this point in my life, more than anything, was another parent, and that was the one thing I couldn’t find.”

I can’t even imagine. My fellow women I have met through facebook are my saviors. Seriously, I don’t know what I would do without them.

They capture the fears at simple holiday traditions:

“When you have someone in your family with childhood apraxia of speech, things that are everyday occurrences for other families are moments for you that aren’t very normal at all.”

She’s referring to the tradition of seeing Santa. Kathy would fret and worry that Santa wouldn’t understand them, among other things. Let me tell you, EVERY mommy of apraxia has been there.

From fighting insurance companies, to therapy sessions as a lifestyle, these two amazing women tell their incredible story and as Kathy puts it, “Today both kids are doing great and I’m still standing.”

This story was inspiring beyond my wildest imagination. I can’t believe I waited this long to read it! Read it people!! That’s my review. You won’t be disappointed!

To win this book, enter below. Open to U.S. residents only! Good luck.

a Rafflecopter giveaway

May 4, 2015
Why we’ll never stop working

I’ve been down lately. Really, really down. It pretty much started at Ashlynn’s re-evaluation meeting and went downhill from there. For all the work she’s done, for how far she has come, for what she knows in the face of so many challenges, it was like a slap in the face.

It’s really not anyone’s fault. It’s just the way it is. I’m dealing with mixed expressive/receptive language issues now. I knew this, I did….it’s just seeing those damn numbers. 1st percentile, .5th percentile. Phew. Deep breath

There were also awesome numbers. Articulation is in the average range. The AVERAGE range! That’s phenomenal. Ashlynn is intelligible to perfect strangers in and out of context. For someone with apraxia of speech, she beat it in 2 years with a TON of therapy, but she overcame it.

Now we’re faced with new deficits. Word finding, expressive language, grammar, syntax, receptive language, memory, attention, writing.

It was overwhelming. My husband had tears, and he’s the one who always finds the positives and the “what she can do’s.”

Even her receptive vocabulary test came back just under the average range. Receptive vocabulary tests have been shown to correlate with IQ tests (even though I didn’t give her an IQ test), and even though I don’t think the test was totally valid since I’m sure her attention played a factor…..

It still made me pause. For once I started thinking, maybe we don’t have this. Maybe I am dealing with limitations. Maybe I am in denial. Maybe I’m not seeing things because I don’t want to see them.

I would read stories and updates on other blogs and get jealous someone’s child ONLY had apraxia of speech. CAS is no joke either, but if Ashlynn only had CAS then she would almost be over speech forever! Sigh. You know you’re down when you’re jealous of other kids’ disabilities. That is wrong on so many levels.

I looked everywhere trying to get my positivity back. I talked to family, to friends going through this journey too, co-workers…nothing helped. I poured over pinterest looking for inspirational memes and quotes that were going to change my negativity and squash my doubts. I found nothing.

I scoured the internet looking for success stories for global apraxia. One I found was on disability now but at least happy she had made it through childhood. That wasn’t exactly lifting my spirits.

At the same time, I finally read a new research article on Apraxia that’s been in my pile. The article describes kids with motor planning deficits (kids with apraxia) rely heavily on auditory feedback which was proven when they demonstrated diminished speech articulation in the presence of noise. Gee, I thought. That’s great these kids found a compensatory strategy to make up for their motor planning deficit, but what happens when you have sensory processing disorder and possibly some receptive language issues that makes that feedback unreliable. UGH

But then I found it. My inspiration was sitting right under my nose.

I know this guy who has bipolar disorder. When I met him he was kind of a hot mess. He hadn’t gone to college, was partying, and constantly getting fired from his jobs. Of course, having bipolar disorder is very difficult. There are daily struggles in his mind I will never know. The statistics for someone with bipolar disorder are less than impressive: 90% of marriages end in divorce when one person is Bipolar. Less than 50% of people with bipolar take their meds, and 1 in 5 commit suicide. Many live on disability. Many are homeless. This guy though, he’s been married for 10 years with no sign of stopping. He’s loyal, faithful, hardworking, finished college AFTER his diagnosis, and stays on his medication. Who is he?

He’s my husband. He’s Ashlynn’s dad. Everything he shouldn’t be doing he’s doing. Everything he shouldn’t be, he is. My husband, Ashlynn’s dad, defies statistics.

Then I started thinking, I know this other guy. He was raised under an extremely physically abusive, alcoholic father. His parents ultimately divorced. He was forced to go to war and and live in actual nightmares. What are the stats on a guy like this? Well, since he’s the product of divorce, he’s 40% more likely to end up divorced himself. He’s four times more likely to be an alcoholic. As a vet, he faces a higher possibility of homelessness. What did the future hold for this guy?

Well, he’s my dad, father of three. Married for 45 years and happily retired. He’s healthy and has a drink maybe once a year. My dad, Ashlynn’s grandfather, defies statistics.

And that’s when I started to realize. Ashlynn comes from a long line of statistic breakers. It’s in her blood.

I thought of me. Had I defied statistics? Well, neither of my parents went to college, so it would be less likely I would receive a college degree or much less an advanced degree….yet here I am. It was highly unlikely I would have ended up at Duquesne University for an elite group of SLP’s, yet there was I was last summer. Maybe I do defy statistics.

My dad’s nephew years ago was on the wrong track. He was in jail, and he didn’t know how to make a life for himself after he got out. He was lost. He asked my dad for advice and my dad said “keep working. All I know is to work.” Years later that same nephew had kept a job and was raising adopted children. He was not in jail and will never go back. He told my dad he always remembered his words to just keep working.

So there it was! Right under my nose. We are statistic breakers. We are hard workers, and Ashlynn is no exception. She always wants to work, do homework, practice writing, ball skills, pedaling, speech, read..you name it. She attacks it, and I realized, I may not have success stories for her EXACT same situation, but I do have success stories for many other hard or seemingly impossible situations and she will be one too…..if we just keep our head down and

working.

April 30, 2015
Still we rise

I received all of Ashlynn’s reports from her re-evaluation. I knew it would be hard. It’s hard to read those scores and things about your baby. However, I was also proud. So proud of how far she has come. She is the hardest working child I know. The social worker and special education teacher seem to understand her the best. They listed her strengths, which are many. They were thoughtful in their words, and I could tell they both believe in her success.

Perhaps that’s why it came more as a shock to read the speech report. It is too painful to summarize. Maybe in another blog post, years down the road. Not now. Suffice it to say, there were no strengths listed. So much of what she can’t do (which I know) without praising how far she has come and what she can do.

I was upset to learn she tested her in the classroom. Ashlynn’s attention severely impacts performance. Doesn’t she know this? Why wouldn’t you take her to a quiet room?

Well after reading the report, it would seem apparent to me this woman doesn’t like my child and doesn’t see her potential. Maybe that’s why she continued to only receive 30 minutes of therapy IN the classroom despite a report that says she is severely deficient in essentially every area of speech and language. I’m not even the most upset about the numbers. There were things Ashlynn didn’t do on the test I know she can do. I’ve SEEN her do it. I’m an SLP, I can assure you….she can do it. Why then didn’t this woman qualify in her report that despite not performing on the test, she can do x,y & z?

No matter. I have my answer.

I guess when you don’t believe in someone, what’s the point in trying?

I’m crying as I wrote that, but I refuse to cry anymore. There are people who believe in my daughter, and people who aren’t just me.

I took her this morning and told her “Ashlynn, I just want you to know you are smart. You are kind and you’re a hard worker. You can be anything you want to be. You can do anything you want to do.” and you know what that girl said?

“I know mommy.”

Before I enter this IEP meeting, I have Maya Angelou’s words running through my head. Ashlynn…..WE WILL RISE

You may write me down in history
With your bitter, twisted lies,
You may tread me in the very dirt
But still, like dust, I’ll rise.

Did you want to see me broken?
Bowed head and lowered eyes?
Shoulders falling down like teardrops.
Weakened by my soulful cries.

You may shoot me with your words,
You may cut me with your eyes,
You may kill me with your hatefulness,
But still, like air, I’ll rise.

April 24, 2015