I think one thing, well actually I KNOW one thing I never knew about CAS before Ashlynn, was the significant difficulty kids with CAS tend to have with word finding.
Ashlynn and all of my clients struggle with this to varying degrees. Sometimes, Ashlynn’s seem innocent. She’ll call me grandma after she’s been with her grandma all day. She’ll say “today” when she really meant “tomorrow,” or say “tomorrow” when she really meant “today.”
Sometimes though, despite being able to speak, “finding her voice” as we like to say, that doesn’t always mean she can find her words. This is especially true when she is sick, tired, or both.
I received a text from a friend a couple weeks ago. Her son is a year older than Ashlynn, still in speech, but talks non-stop now.
“I debated calling in today and letting G stay home. He was just not himself this morning. He said, ‘No school. I can’t.’ He walked down the hallway with drooping shoulders.”
I asked her why. She didn’t know. That’s all he said. “No school. I can’t.”
My response?
“Stupid apraxia. Even when they can talk, they can’t verbalize everything they are thinking/feeling.”
A few hours later she texted me that G was sent home from school because he was sick.
My daughter used to become overheated in her carseat. It would cause her to throw up, but she would only tell me, “my neck hurts.” I became really good at diving to a shoulder when Ashylnn’s “neck hurt!”
Today I had the day off with both of my kids. It was great! We played, relaxed, and even took a nap. Aren’t they cute?
Ashlynn NEVER takes naps anymore, so I should have known something was up then. She went to her private swim lesson tonight, and then we all went out to dinner. I spent most of the dinner in the bathroom with her. She kept thinking she had to go “potty.” We walked around, we jumped, we danced, nothing. She started saying she was tired. She NEVER says this. I asked her if she felt sick. She said no.
We drove home, gave her a bath, and she went straight to bed. I rubbed her back and asked her again if she felt sick. Did she feel like she was going to throw up? Did her tummy hurt? She just shook her head no.
I went out to the living room, and not 5 minutes later I hear coughing and she is throwing up.
Sigh.
Not that it matters I guess whether she had told me she felt sick or not. It’s not like the outcome would have changed; but it is a glaring reminder of how speaking intelligibly and finding her voice, did not fix everything like I thought it would. She will still struggle to find her words.
I remember listening to a Ronda Rousey interview, and she was saying that when she received a bronze medal in the Olympics she was a young girl in her teens and people wanted to interview her. She would beg her mom not to make her do it. Her mom made her do it anyway, but her older sister would sit behind her chair, and when Ronda couldn’t find her words, her sister whispered some to her. Ronda doesn’t do interviews anymore with her sister behind a chair, and that gives me hope.
For now though, I’ll file away this event in case I need it later. Just like I did when Ashlynn’s neck hurt. I always say a mother is an expert on her child, and this is why. Only I know these signs. Only I was there through all of these situations and experiences. ALL of them.
Next time, I will know she needs to throw up and I’ll be prepared.
I’ll give her the words when she can’t, or is just too tired to find them herself. I will know because I have always listened and I will always listen to way than her words, and I always will.
This year was definitely a big year for me and for apraxia awareness! I coordinated the Walk for Apraxia in Denver, I was honored to be published in the ASHA blog and on The Mighty twice; and of course as you all know, my story on Ronda Rousey having apraxia went viral and was featured in national publications and on Good Morning America! This lead to our popular facebook group Ronda Rousey: Knock out Apraxia, and numerous posts featuring our apraxia fighters attached to the hashtag #knockoutapraxia. It has been quite a year!
Thank you to all who follow along, everyone who helps raise awareness, and all who have reached out via email or phone and connected to me!
Here are my most viewed posts of 2015!
1.) Her Fight our Fight: The day we met Ronda Rousey. Read here
2.) Strategies to promote speech and language in the pre-verbal, or minimally verbal child with apraxia. Read here
3.) What is Childhood Apraxia of Speech? Read here
4.) Repetitive books that are great for speech and language. Read here
5.) Why nature weighs more heavily than nurture. Read here
6.) Prognosis is not just a funny word, there is nothing funny about it. Read here
7.) Global Apraxia, you brought your A-Game, but my daughter’s game is better. Read here
8.) Interview with Reagan, a 17 year old with CAS. Read here
9.) Feed the Snowman Articulation Game for high repetitions. Read here
10.) Interview with Sharon Gretz, the Executive Director of CASANA (apraxia-kids.org) about what you should be seeing in therapy. Read here
In case you missed it
These are some of my personal favorites and topics since I started blogging throughout the years
1.) IEP on the other side of the table chronicled Ashynn’s first IEP meeting and how I experienced first hand how difficult they are on a parent. Read here
2.) Ashlynn Play Boats with Daddy details persistent language and dyspraxic issues, but also progress and success. Read here
3.) DTTC: Evidence based treatment in CAS is an interview with national expert Ruth Stockel from the Mayo Clinic on treatment using this method. Read here
This year we spent Christmas in Utah with my husband’s brother and his family, and the day after Christmas we went up to a ski resort where Ashlynn could get a cheap lesson with the purchase of an adult lift ticket. She has been only once before with us this year where we just had her practice getting the feel for it.
Even though she’s only six, I really try to add additional activities like this as I can afford them, because if there is one line that has really stuck with me in all of my learning and experience with apraxia, it’s:
Experience is the key architect of the brain
Especially, experiences and interventions that are done early while the brain is still developing. When the brain is still developing, you have an opportunity to rewire the neurological pathways, just like we did with speech. Ashlynn’s speech disorder is a motor speech disorder. It stems from a motor planning issue, which is why it requires principles of motor learning. If we could get Ashlynn to speak clearly ( and we have), we can also give her the best opportunity to live a life where she can do anything she wants to do, global apraxia or not. At least, that’s what I believe.
Therapies like OT and PT are necessary, but I also believe activities like swimming (which we have her in privately year round) and now skiing I know will all work together to rewire her brain.
We knew skiing would be a challenge. It requires balance, coordination, and well, motor planning. You know, all the things she has a disability in. That was okay with us. We’ll start early and hopefully skiing will help improve all of those things too, even if she can’t ski.
The first time we took her, my husband was so proud. He must of carried her up a small hill close to 20 times and had her stay on her skis and just slide into his arms. She fell a lot, but she was happy and smiling, and just the fact she could stay up a lot of the time too was amazing. It’s amazing because we have seen her work so hard to do any gross motor task. She was significantly delayed in walking, running and jumping. Once she could walk she still fell CONSTANTLY and that lasted well into her third and fourth year of life. Any terrain change or objects in her path, and she would immediately hit the pavement. I don’t know what we expected for her first time, but I don’t think we expected her to be able to stand up at all.
We were wrong, and our hearts swelled with pride.
So back to this trip. Her second trip. We put her in a two hour lesson.
“Will you be with her?” I fretted.
“Yes, Laura. I’ll stay with her,” Cody assured me.
He went into buy the lesson and came back out with a registration card and also informed me we would not be allowed to be with her. Inside I started to panic.
“This card asks if there are any learning disabilities they should be aware of. Should I put something?”
I blinked at him indredulously. He’s usually the practical and realistic one about her disability. Should he put something??? Was he joking?
“Yes you need to put something! Our daughter has a disability in EVERYTHING that is required to ski!!”
“Okay, Laura. Calm down. Just tell me what to put.”
I had him write down global apraxia, a disorder that affects balance, coordination, and planning motor movements; along with difficulty with attention and following complex directions.
I was still panicking. We can’t leave her alone with teenage instructors! She requires professional teachers. This was a mistake. We should have looked up the disability program. I know they have them because a psychologist I worked with who taught me how to snowboard was also an instructor for the disabled population at a ski resort.
“Laura, stop helicoptering,” he said dryly, and just like that off my baby went holding her daddy’s hand.
I looked at my 3 year old son. He was having a meltdown. He has some sensory issues too, the exact opposite of Ashlynn though. He is hypersensitive to things and right now he was screaming his new ski boots were too tight and he didn’t want to go skiing.
Sigh. Dealing with him helped take my mind off of Ashlynn.
Cody came back in and said we will be able to see her class from the lodge. Yes! I raced up to find a seat. Cody said they were teaching the kids inside first on some equipment. I could go look through the glass. I went downstairs and she had an instructor giving her 1:1 attention and she was happy. Laughing. My anxiety went down a little. I was happy they were still inside. It was literally around 0 degrees outside, and I was worried Ashlynn could get frostbite. Due to her additional expressive language delay she doesn’t tell anyone when she is cold, but also her under-responsive sensory system doesn’t feel cold like we do.
Back upstairs, one of her cousins had already come back, cheeks red and feeling sick from being so cold. Oh man. We’ll see how this goes when she gets out there.
Then I saw her. I looked down from the second story of the lodge to see my little girl with her pink and black coat in line with the other kids. Skis in hand she was marching in her ski boots through the snow. I almost cried. I was thinking about how long it took her to walk and how ANYTHING would throw her off, and here she was walking in ski boots that are already hard to walk in, tromping through snow that has varying terrain, and she was holding equipment that throws off balance. She didn’t fall once and proceeded to get on the “magic carpet” that took her up the hill.
A kid in front of her fell. My heart sank. I knew she was next. I prepared myself for her to fall, and I watched this.
The first head in line by the cones is Ashlynn, standing on her two feet, riding up the magic carpet. I blinked back tears. It’s hard to describe if you aren’t a parent, but that is my heart in that pink and black coat. I would die to protect her, and I was watching her spread her wings and fly, or ski, so it were.
I watched her until she rode out of view.
Meanwhile in the lodge, more of her cousins came back to warm up. I kept staring out the window but never saw her come down. I asked her 14 year old cousin where she was. It was a spot on the other side of the lodge. I raced over and looked out and soon my husband joined me. It was a little ski area school with very small hills. They were teaching the kids how to push their heels out to stop. As I watched all the other kids go, I thought to myself I’d just be happy if she made it to the instructor without falling. She fell a few times, but then, at the very end, after getting up at least 4 times……
….her heels went out and she stopped on her own.
Tears immediately welled in my eyes. I looked over and my husband was literally crying. Our hearts were leaping for joy.
We went back inside and I sat down. I didn’t plan on going snowboarding this trip. For one, I just barely learned before Ashlynn was born and I fall a lot. My muscles are always screaming the next day from pushing me back up so many times. Second, I have really bad knees. Most people don’t know because they’ve been bad since I was 17, but they will just randomly give out on me and snowboarding is particularly hard on them. It just didn’t seem worth the pain or embarrassment anymore. My husband though had brought all my stuff this trip in a misguided belief he would be able to get me to go out on the slopes.
Well anyway, as I was sitting there I couldn’t stop thinking about Ashlynn. She has a disability that makes her work harder than everyone else to ski. She has fallen her entire life. I can’t imagine. She fell multiple more times trying to learn to ski, and yet she always got back up. No temper tantrums, no tears, just her discreet determination. What the hell was my excuse? I don’t have a disability. I may have bad knees, but it’s not a disability.
“Let’s go Cody. I’m ready.”
He looked at me and didn’t skip a beat. He said he had to go out to the truck to get my board and he’d be back.
I fell. A LOT. I fell so much that as I predicted, I’m in pain. After falling at least 15 times I was frustrated and embarrassed. How the heck does Ashlynn never get frustrated?? Again I thought, you don’t have a disability. Get back up. And you know what? I had fun out there in the fresh air and beautiful snow-capped mountains spending time with my husband!
I have seen this meme on disabilities and it never spoke to me until today.
I realized today personally what that means.
I checked facebook and my nephew who is only 20 commented on my pictures that he was so proud of her, and that she teaches him a lot about fighting and never giving up. I teared up again. When Ashlynn came back from ski school I read her what people had commented and she smiled and said, “Jerod say that to me?” She looked so proud.
My husband told her he was so proud of her with tears in his eyes. She replied, “yeah, but I fall a lot daddy.”
We both jumped in and gushed that everyone falls and it’s the getting back up part that counts.
She smiled and replied, “yeah, and we try again tomahyo (tomorrow).”
Yep Ashlynn. That’s right baby. When we fall, we get back up and we try again tomorrow.
So yeah, this Christmas I learned the only disability in life is bad attitude and if my daughter with an actual disability doesn’t use that as an excuse, neither will I.
Me and Ashlynn at the hotel in SLC. “You’re wearing your fancy hat mommy,” she said. We’ve come along way!
When I worked in Denver schools early on in my speech therapy career, I became numb to the phrase, “Thank you so much. Thank you for everything.” The parents were soooo grateful for my help, and I didn’t understand. It was my job.
“You don’t have to thank me,” I would reply. “Is there anything else I can do? Any other goals you would like to be written?”
The response was always the same. “No, no? Just thank you. Thank you so much.”
Early on in Ashlynn’s special education career, no one really seemed to know her. Every time I went to school for a meeting, I always saw more at home than what they would report at school. That is disheartening to be honest. I know I’m a professional in an educational world, but that doesn’t mean I’m an expert in education. I’m an expert in speech and language development. I wanted the “experts” in education to report on my child and I saw more at home than what they said they did at school.
I have spent soooo many posts waiting for a teacher who would believe in her. Waiting for “professionals” to see what I see. Today, before Christmas break, Ashlynn came home with this:
If you have followed me or my story, you know that Cody, Ashlynn’s dad, is a realist. He might tear up at her IEP meetings, but overall, he’s pretty practical about our situation. When I am distraught over test numbers and percentile ranks, he is the one to calmly remind me she always makes progress and never goes backward.
Please direct your attention the above picture. When I saw it, I had an internal cheer. Okay, this is it!! Finally! The money we are dumping into Kindergarten Enrichment, OT, and Speech is paying off!! Last year at this time she STILL couldn’t write her name after years of practice.
I looked over and saw Cody choked up. I paused and realized how huge this was. I’m always looking at the next goal I never celebrate these moments. I’m proud, I’m INCREDIBLY proud, and it hit me. Ashlynn came home with something I didn’t know she could do.
That has RARELY happened before, and it’s been happening more and more this year.
There was a time I was sad at the thought it took a team of people,
a TEAM of professionals
to help Ashlynn do things typical kids do so naturally. When we handed out the teacher Christmas gifts this year, I wanted to hug each person: the teacher, the SPED teacher, the para, the SLP, the OT, the PT, the psychologist, and THANK THEM. Thank them for helping my child. I remembered me a few years ago wondering why people were thanking me for doing my job…and that’s when it hit me.
I get it now.
Ashlynn’s TEAM this year is a dream team. Every…single….one……. believes in her.
This is Ashlynn’s first day of school pic. The adult in the front is her teachers aid, and the adult in the back is her school SLP. From day one they were there for her. For the record, they both consider this “just doing their job.” For me though, I knew she was taken care of from the start. Ronnie, her teachers assistant (T.A), has bought her a book for her birthday AND for Christmas; and if you don’t know what T.A.’s make, let me put it bluntly and tell you they make shit.
When I have told Ronnie thank you for buying Ashlynn these gifts, she only smiles as though she had no other choice and says “Of course!! It was her BIRTHDAY!!”
It is incredibly humbling to know her salary, and know that she STILL felt like she owed my child a present. I wish I could buy her the world. I feel helpless to prove to her how much that means to me.
Which brings me to my next picture. Ashlynn’s SPED teacher is one of the best. I really don’t even know where to start. Teaching is her calling. Her compassion, passion, and drive is so infectious, it spills into her children, her biological children that is. This is a picture of her youngest daughter “teaching” Ashlynn during a tornado drill. Her daughter wants to be a teacher, and judging from her current skills, is well on her way! Colleen has high expectations. Can I just cry right now?? Ms. Colleen has HIGH expectations from my daughter.
I can’t tell you how many times I have told various teachers and therapists that Ashynn is capable. She will rise to the occasion. I also remember the countless “you poor thing” pity stares as though I were in denial. That never deterred me from saying it though.
True to form, I wrote a note at the beginning of the year to Colleen in Ashlynn’s back and forth book and I said, “Ashlynn will rise to the occasion.”
Now that Ashlynn has Colleen, she is proving it.
This next picture is Ashlynn at the Walk for Apraxia of Speech. The other girl in the picture is the daughter of Ashlynn’s school OT. I’m a writer, and I can’t even….I can’t even….express the words to describe what this meant. Why on Earth the school OT took time our of her weekend to bring her children to Ashlynn’s walk is beyond me. I have no other choice but to feel blessed and humbled. Even better is what these women are teaching their daughters.
This last picture is Ashlynn’s Kindergarten teacher. I’m so blessed to be in a district who values inclusion. This is Ashlynn’s general education Kindergarten teacher. Ashlynn is in a very restrictive special education program, and sometimes kids in this program don’t feel as part of their general education peers as they should. Ms. McDermott, her general education teacher, values and treasures Ashlynn as part of her class. She tracks Ashlynn’s progress and knows her skills just as well as Ashlynn’s SPED teacher. In addition, she strives to ensure the children LOVE school. She is a gem and in short, teaching is her calling too.
Though the words sound so empty, they are filled with deep emotion. “Thank you.” I’ll never take it for granted again.
I was filling out Ashlynn’s Small Steps in Speech Grant Application tonight sparing myself plenty of time since it is due tomorrow! It’s always surreal to play the part of parent like this: stressing out, frantically collecting documents, invoices, cost verifications, reports, insurance denials and more only to turn around and provide therapy for parents who are doing the same thing.
It’s always an awkward position to be a sounding board for parents stressed about payments and cost of therapy, but to also be the source of their financial woes as well.
Sometimes since I’m both a mom and SLP, the boundaries become a bit blurry for me. I relate to them so personally, but in reality I need to be there for them professionally.
Tonight I am full mode of parent. Why insurance doesn’t cover a neurological disorder like apraxia is freaking beyond me. Don’t get me wrong, some insurance companies do, but most do not; and we are the lucky people to fall in that DO NOT category.
When Ashlynn was dx I was on maternity leave and was living partly off savings I had accrued while working full time. I happen to be a good saver. However, even the best saver in the world can’t prepare someone for paying $65 per 30 minutes every week….and that’s not even what research says a child should receive. Yes, RESEARCH saying children with apraxia need 3-5 times per week of intense intervention. We all quickly learn insurance companies don’t give a $hit about research. Lucky for me I was an SLP so I could feel confident that I could continue the sessions throughout the week, but even still, that kind of money isn’t just chump change.
Add on global apraxia challenges as is the case with Ashlynn, and we quickly find private OT and swim lessons adding up as well. I seriously can hear “ching ching, ka-ching” in my head right now.
Insert CASANA. Two people on their staff of three dealt with the same issue back when their children were young. They fought insurance companies and lost and charged up credit cards with therapy bills. Thanks to their struggles and their desire to help those who came after, families like mine at least have the option to apply for grant money funded by CASANA when insurance companies indifferently give us the finger.
I’m in such a better place now, emotionally than in the past. Despite gains though, incredible gains really, Ashlynn is still so damn far behind; and when I have to fill out an application begging someone to help my child because insurance doesn’t consider it a congenital malformation or whatever the hell insurance companies have decided they will only cover….it sucks. It sucks to put in writing how your child, who is your hero, who wakes up everyday with a smile and works so hard in therapy, still struggles to do a basic human right: communicate. This was my plea tonight, and I thought I would share.
Ashlynn was dx with CAS at the age of 2 years 11 months. Since that time the dx made a huge difference, as it afforded her the appropriate treatment approach. For as many gains as she has made with speech articulation, her scores do not show it. Recent testing in the Spring done by the school for her re-evaluation, revealed scores well below the average range in all areas, except for that on a single word articulation test, which came in barely within the average range. You cannot imagine how heartbreaking it was to realize how hard she works and how much improvement she has made, only to be faced with scores that are still significantly below average for receptive language, expressive language, word finding, motor planning, and pragmatic skills. These deficits are impacting her reading in the way of phonemic awareness, letter name and letter sound accuracy, among others. These deficits impact her socially because she can’t keep up with the complex imaginative language girls her age now have. These deficits impact her writing and classroom participation in group discussions. At home, she is still unable to accurately relate personal narratives due to her crippling word finding and expressive language deficits, despite seeing the wheels turning in her head desperate to come out.
Ashlynn has to fight everyday. She has to fight to speak. I gain my strength in her and know if she is still willing to fight, then I have to fight for her and help her get the services she needs. I know she can overcome this. I KNOW it, but she needs so much repetition and help. She will rise to the challenge though, and that is why we need this grant. To continue the work Ms. Deb puts in along with Ashlynn’s team of other therapists, and of course, Ashlynn herself. Thank you for your time and consideration.
Global Apraxia is a hell of a disorder. I’ve written before that though at times it has been a blessing, I don’t believe I will ever quite forgive it. Despite a child having the will, they have to work, and work, and work to find the way. Though they have things they want to say, they can’t always say it. Though they have things they want to do, they can’t quite do it; let me revise that. They can do it, but with more practice and repetition that cannot possibly be adequately described with the written word.
Then there’s the bystanders. People who aren’t close to the situation. They think, “well just work with her a little and she will get it.” Even her preschool teacher thought writing her name would just “click.”
It NEVER clicks. Nothing A has done has EVER clicked.
EVER.
It is with pure determination, will, tenacity, and resilience that she succeeds…….and succeeds with a smile on her face.
A is almost six, and she has never told me what she wants to be when she grows up. She has never begged me for a toy, or to be in an activity. While I see other girls her age eagerly expressing how they want to be a singer, or a ballerina, or a gymnast….I have had no idea what A wants to be, or what she is interested in.
I can guess. She likes to cook. She likes to bake. She is a happy girl and generally speaking likes any activity I put her in. She loves to play teacher, speech therapist. occupational therapist….you get the picture. But she has never actually told me who or what she wants to be.
I kept her in swimming because not only does it help with bilateral coordination, it helps with focus and core stability. That is, until the day I wrote this post one year ago.
I wrote on my fb page I still can’t read it, and I can’t. I know what it says though, and it’s the scariest post I have ever written. Suffice it to say she almost drowned in swim lessons, and her instructor was able to somehow coax her back in the water. Had he not done that, I am certain she would never have attempted to swim again. However, he did, and the story played out much differently. He was a head guard, and he also offered private swim lessons, so we put A in private swim throughout the entirety of last year.
A LOVES this man. She TRUSTS this man. On Valentine’s Day she used every last candy pack and glued it to his card. I can’t believe how incredibly patient, kind, thoughtful, and understanding he is with her. I can always see by her smile how much she enjoys it, but part of me has always wondered if I should be putting her in dance…gymnastics again…..karate…..hippotherapy…whatever. I wish she could say, but she doesn’t, so I take stabs in the dark.
Progress has been slow. Josh (her swim instructor) told me a couple weeks ago that she is at the point where she can float alone, but everytime he tries she freaks out and they regress to the beginning. He was telling me he needed to find a way to let her go without starting from ground zero again.
I prepped her the whole week. “A, Josh thinks you are amazing! You are doing so good! He wants to let you go, but you can’t be scared. If you fall, he will be there. He will never let anything hurt you. You have to try and do it on your own.”
“Why?” she asked.
“Because honey. We swim alone. Do you see anyone helping me or daddy when we swim?”
“No,” she admitted.
“A, it will be okay, I promise. Josh will never let anything happen to you, but you have to try to do it on your own okay?”
Silence
“Okay A?”
“Okay, mama. I’ll try.”
After prepping her the whole week, she had an opportunity to go up with her grandparents early to a weekend getaway in the mountains. As her private swim lessons are Friday evening, I considered cancelling. I asked her what she wanted to do, and she said she wanted to go swimming. Okay, so I let my son go early and took her to swim lessons.
The lesson started off typical, but it ended anything but.
Josh warned her he was going to let her go. She didn’t start freaking out like she usually does. She told him ok.
He had her on her back and I was holding my breath. I know he’s right there, but I have PTSD from her incident last year. I’m scared too, even though I know it’s an irrational fear.
Josh lets go…
…..and he counts to three before he lifts her up!!!
He cheers!! “A!!! You just floated by yourself for THREE seconds!!”
She smiled from ear to ear. He tried to do it again, but she shook her head.
“Okay,” he said, “not today. That’s okay. We’ll try again next week, but I am sooo proud of you!”
When we left the pool I was praising her. She typically will just smile which is good enough for me. This time though she proudly exclaimed,
“Mama! I float by myself!”
“Yes!” I said. “Yes! You should feel sooo proud A.”
“Thank you mommy, ” said A.
“For what?” I inquired.
“For swimming” she said sincerely.
I had finally had my answer. She may beg or tell me who or what she wants to be or do, but her simple thank you was profound enough.
I teared up before I could barely utter, “Oh A, you don’t have to thank me, but you’re welcome.”
As I said before, global apraxia is a hell of a disorder, but when you beat it, there is nothing in the world better.
