Day 21 of Apraxia Awareness Month is to discuss your biggest challenge.
I read the various posts and related to all of them. ALL of them. Unfortunately when your daughter has a laundry list of disabilities with apraxia being just one of them, yes, I could relate to everything.
“My child has difficulty navigating social situations.” Check
“My child struggles with handwriting.” Check
“My child struggles in school.” Check
Literally the list goes on and I could check off almost everything else. I’m farther in this journey now though and though we continue to have new challenges, I had an epiphany about them.
The biggest challenge was realizing the very definition of challenge does not mean struggle.
No. The very definition means a contest, competition, or objection. And guess what? One can argue and overcome ALL of those things. If you follow my social media pages, then you know Ashlynn is having a stellar last couple of months. The girl with dyslexia who was more than two years behind in reading is testing on grade level. She just graduated occupational therapy after being in private OT for SIX years. At field day, the girl with dyspraxia and cerebral palsy wowed her classmates by killing it on the hippity hop ball station, and the girl with a language processing disorder and apraxia is just “one of the gang” according to her general education classroom teacher.
The biggest challenge was not just hoping, but holding firm my belief that Ashlynn could overcome them all.
Ashlynn just ended her third grade year and she is 9 1/2 years old. I have been through AT LEAST 8 IEP meetings. I have been brought to the edge of despair. I have watched my husband shed tears in front of strangers. I have looked around a room of literally EVERY discipline (speech, OT, PT, Special Education, general education, psychology, social work) and listen as they ALL described deficits in my daughter. I have sat, stone faced and quiet for fear that talking would reveal my anguish and diminish me to a weeping pile of sadness on the floor. I refused to be that person. I was probably rude at times, but I promise it was for self-preservation and to ensure my daughter never ONCE thought I didn’t believe in her.
As one who has been on this journey with Ashlynn, my biggest obstacle was in discovering no obstacle was ever too big.
Armed with this knowledge now (at least in this current space of happy that I’m in), I truly look at current and future obstacles and say, “Bring it. You have never met an opponent like us. You can try to break us, but you won’t. You can knock us down, but we’ll get up stronger.”
An SLP Mommy friend I know posted a video and said “Apraxia created one gritty little girl” referring to her resilient daughter. I couldn’t agree more. Apraxia was never our greatest obstacle. Believing we could overcome anything was, and we did it. I know there are more struggles, more obstacles, bigger mountains to climb but they don’t intimidate me anymore. Ashlynn has proven time, and time, and time again that no matter what life throws at her, if you have a positive attitude, perseverance, and HEART…no one and nothing can beat you.
Starting with one of my most popular posts “Lessons of a Tricycle” to “Lessons from a Bicycle” years later, success has always been waiting for us as along as we just keep pedaling. Just kept trying and never, ever, EVER give up.
This past weekend my niece graduated from college and Ashlynn wanted to try on her cap. We snapped a picture and all commented, “how cute!” But inside, I was silently smiling and thinking, “Another challenge? BRING IT 2032!”
Most parents of kids who have a child with global apraxia will at some point visit the neurologist. It’s usually before the age of 7, which is the age Ashlynn is today.
I remember the referral, although the dates are a little fuzzy. We were either at Ashlynn’s 6 or 9 month checkup and I had to fill out one of those dreaded developmental screens. Don’t get me wrong, as a professional I’m very, VERY pleased my pediatrician had them; but as a parent each question only served as a slap in my face to everything in which Ashlynn was behind and it was hard. Really hard.
Well anyway, I had mentioned Ashlynn had very tight calves (or heel cords) as the professionals view it. The pediatrician, knowing I was in the profession tread lightly. The result though was a possible referral to the neurologist.
I declined.
So curious to me now. Why did I decline? Why wouldn’t I have at least gone to the appointment? The pediatrician, sensing my hesitation, told me to massage her calves in in the bathtub every night and come back and we could re-evaluate at her next well baby visit. I pounced on the cop out and religiously massaged her calves every night. By the time of her next visit, her heel cords were looser and she could flex her foot. I remember being praised by the pediatrician for Ashlynn having such an involved mommy and she left it up to me if I still wanted the neuro referral. Of course I said no. I could help her. I could do this. I thought for sure when Ashlynn started walking, she would be a toe walker, but she wasn’t. We had to remind her when she learned how to stand to keep putting her heel down, but you would never detect even a hint of toe walking now.
Anyway, that’s water on the bridge, because yesterday found me and my seven year old Ashlynn finally at the neurologist. I actually would have went sooner, but our insurance sucks! I knew going to a neuro would mean a recommended MRI at least, and our insurance comes with the lovely 80/20 policy and a deductible of 5K anyway before that kicks in, so I had to be willing to pay of out pocket basically for her MRI which I wasn’t willing to do. We have her in all the right therapies, I would wait when maybe my insurance would get better. This past year I switched the kids to my insurance plan. It still has a high deductible, but is more manageable and at least offers 20 visits of speech and OT a year, so it’s now or never.
Ashlynn’s “ballerina toes”
The appointment itself was good. She took our case history, and did an exam on Ashlynn. She was a lovely person who commented how she could not detect any heel cord or tight calves now, what a great and friendly personality Ashlynn has, and when she watched Ashlynn run, commented on how good it looks considering all of her motor planning issues. I was so proud. I told her Ashlynn works hard and gross motor skills are the area in which Ashlynn is seeing the most progress. I added that the school PT said she will probably meet all of her goals and be within the average range within the next year.
She was a resident, so she went to get her supervisor for the final conclusions and recommendations. The supervisor came in and examined everything she missed. I felt bad because in five minutes this woman identified an under-active gag reflex, oral apraxia, and verbal apraxia (based on a measure called the diadochokinetic rate). She didn’t say this aloud, but I knew as an SLP that was what she was examining. They recommended a Tier 1 level of tests first which include an MRI and genetic micro-array testing. I nodded my head. It’s what I was expecting. I know many, many kids now in the apraxia world and this is the next step. We want to see if there is an actual cause we can pinpoint for all the motor planning issues.
Then, this.
“We would classify her at this point as a developmental delay (insert loss of breath. Loss of breath even though I KNOW she has this, it’s just so hard to hear) and that she’s functioning right now around a 4 year old level.”
I just stared back at them. I was thinking, what on Earth did they do to just decide she’s functioning at a 4 year old level? They heard her talk, ok. They have my case history, ok. I wouldn’t put her at a 4 year old level based on that.
“Does that sound about right?”
I kept staring. Her dressing skills. They asked me in detail about her personal care, adaptive skills we call them, and, oh yes. Yes. She can’t brush her teeth independently, still can’t spit, can get dressed independently but usually has things on backward or on the wrong feet……the adaptive skills is what gave them this conclusion….
“Ms. Smith? Does that sound about right?”
I nodded my head. I couldn’t get any words out. It felt cruel. It’s not their fault, it is just the way these appointments are. I thought of Ashlynn’s four year old brother on the way out. He can get dressed independently, brush his teeth independently, spit, can almost shower by himself…..punch in the gut.
I looked over at Ashlynn holding my head walking out of the hospital. She was smiling holding my hand, and holding a notebook and pens in the other hand. Always working that girl. ALWAYS. During the appointment she “took notes” for the doctor and gave them to her at the end. The doctor who smiled and was nice to her believes she’s functioning 3 years under her actual age level. Similar to the day she was dx with CAS and Ashlynn smiled at me and said the one word she could, “hi,” she remains happy and with a positive attitude. I wanted to cry, but I won’t. That’s not to say I’m against crying. It’s just to say it’s not how I want to process it all. I will write it all out and when Ashlynn looks at me I will smile because that is what she deserves.
I turned on “The Fighter” by Gym Class Heroes.
“Just waking up in the morning
And the be well
Quite honest with ya, I ain’t really sleep well Ya ever feel like your train of thought’s been derailed?
That’s when you press on Lee nails
Half the population’s just waitin’ to see me fail
Yeah right, you’re better off trying to freeze hell
Some of us do it for the females
And others do it for the retails
But I do it for the kids, life through the tower head on
Every time you fall it’s only making your chin strong
And I be in the corner like mick, baby, til the end
Or when you hear this song from that big lady”
One last thought. My dad has never been a dreamer and he certainly did not encourage us to dream. He encouraged us to work, stay out of debt, and have a plan B. He’s a practical man. I think maybe at one time he did have dreams, but they were crushed slowly until they were snuffed out. Between Vietnam and then coming back with no college degree and no credit, he was a blue collar worker his entire life. That’s why it was surprising the other day when my mom called me and said,
“Dad wants to know if you know what Ashlynn’s name means?” Seems like something I would know. I didn’t know though.
“No, what?”
“To Dream,” she responded.
We both paused.
“Wow” I managed. “Dad told you to tell me that?”
“Yes.”
I was silent. Honestly it was hard to process.
“He told me the other day too, Laura, he believes Ashlynn will be a miracle.”
Silence.
“Wow” I managed again.
So Ashlynn, one day when you are reading this, I want you to remember that Christ once told us in Matthew 17:20 “And he saith unto them, Because of your little faith: for verily I say unto you, If ye have faith as a grain of mustard seed, ye shall say unto this mountain, Remove hence to yonder place; and it shall remove; and nothing shall be impossible unto you.”
So work baby girl, and I’ll work alongside you; but most importantly DREAM and BELIEVE and your entire family will be here dreaming and believing alongside of you.
My dad with four of his grandchildren including Ashlynn
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.
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.
Exactly 18 months ago, I wrote one of my favorite and initially most popular posts: Lessons from a Tricycle.
At that time, Ashlynn was close to 4 and still could not pedal a tricycle. I describe how we bought it a couple months before her third birthday when I was pregnant with my son. A year later, I wrote that post and explained that she STILL wasn’t able to ride it. When one has motor planning difficulties, the steps involved in riding a tricycle become glaring.
Core strength
Bilateral coordination
Vestibular and propriocepive systems
Balance
Strength
Endurance
Who knew one needs ALL of the above to do a simple childhood rite of passage like ride a tricycle. In that blogpost, I described “arched back and frazzled patience.” My back hurt every time I tried to teach her how to ride. I would lean over and pull or push her, while she struggled just to keep her feet on straight. I wondered time and time again, will she ever actually get this down? Do you have any idea how heartbreaking it was to have her “walk” her trike back home?? I knew deep inside though she would get it one day. I wrote,
“Success will surely be there, waiting more patiently than me.”
After having my son, I realize how easy people have it. I didn’t teach my son anything. I gave him his big wheel and said “have fun.” I didn’t have to teach him how to keep his feet on the pedals. He just did it. I didn’t have to remind him that while he was pedaling he had to look up and pay attention because he was going to fall off the curb. He just did it, and I’m so proud of him. He loves flying down the street on his big wheel shouting “faster! FASTER!!”
I remember my husband posting enthusiastically when Ashlynn had actually purposefully and independently pushed the pedal forward herself and propelled herself for at least two rotations. We were so sure she had arrived. That was it right? She got it down, right?
No, no it wasn’t. The motor plan wasn’t quite carved out enough in her brain. At least, that’s how I imagine it. I imagine pathways in her brain as a ski slope full of thick powder. Every motor activity requires her to carve a path herself to the bottom. It’s hard. It’s tiring, and when she gets back up the hill to try again, she may swerve off track and be forced to try again.
Once the motor plan is mapped though? Oh boy. Then it’s like the groomed hill, wide and easier to maneuver. I dare say we are beginning to revel in the groomed slopes.
She rode her trike around the block tonight. As I watched her in front of me, the sun was setting, and there she was….laughing, smiling, turning the handlebars when she was in danger of veering off the curb, and going as fast as she could and then stretching her legs out in front of her to feel the wind on her face. This to me is childhood.. This to me is what apraxia had robbed from her for so long. As I watched her, hair blowing carefree in the wind, the setting sun once again caught my gaze….and I realized, the sun was setting on a chapter in her life. There it was….success…just as I predicted, waiting more patiently and more beautifully than I ever could have imagined.
Here’s the video if you’re interested. Warning: She’s so far ahead, she’s hard to see 🙂
I can’t remember a time since I learned to write that I stopped writing. I was the girl with diaries, journals, writing pads, and notebooks filled with writing. Obviously now, I continue to write. There was a time though my writing was noticeably absent. I recently scoured my notebooks and old blogs searching for what I wrote around the time of Ashlynn’s diagnosis and came up empty. I had many poems celebrating her birth and first year. One of my last poems was this:
Angel
They told me me you were my baby girl
as you cried hello to us.
I believed them at the time
admist the chaos and the fuss.
They told me you were my baby girl
and when I took you home,
I would gaze upon the sweetest face
I had every yet to know.
They told me you were my baby girl
and I would gaze at you at night.
I would watch your lips
flash smiles radiant and bright.
They told me you were my baby girl
and I have so many flaws;
and you are perfect in every way,
they must have got it wrong.
They told me your were my baby girl
and my baby girl you will always be,
but I know the truth and the truth is,
God sent an Angel to me.
I stopped writing shortly after this. This was the time during her diagnosis. I didn’t start again until a year later when I started this blog.
I guess I could brush it off and say I was simply too busy. After all, I WAS working full time and then coming home each night to continue speech therapy with her.
That’s a lie though. As I’m three years out now and I’m meeting parents who are new to the dx, I realize the devastation and the heaviness was to much for me to even write. To WRITE. My outlet, my creative platform, my emotional release. I wanted to hide it all and be strong. I had to push forward, but as my friend Kim has said, there is always an underlying sadness threatening to break way at unexpected times. A mix of guilt, pain, and desperation to help your child that can only be released through tears. Tears I fought back.
As I met a mom last Saturday, she broke down three different times. She seemed embarrassed to say she hand’t told anyone her son has apraxia because she doesn’t want him labeled. I totally understood what she was saying. If you read my poem, I would suspect it’s pretty universal. We see perfection in our child and our children, and a label means other people see something less than perfect. It is very painful, because despite any imperfections, in a mother’s eyes, our children were “fearfully and wonderfully made.” Psalm 139:14
I’m glad I started writing again in 2012.
My story, OUR story, has been one of success and triumphs. Yes it is still of struggle, but through the struggles emerge victories, however small. Yes there is still pain. Gut punches from reading reports in black and white, but there is also progress and celebrations I might have taken for granted. There are now friends I never would have met, people I never would have known, and admiration for a little five year old girl that might have never been as great. If you talk to any mother who has a child with apraxia, they will no doubt agree that child is their
