SLP Mommy of Apraxia

Tag: dyspraxia

  • Learning to swim means facing our fears

    Learning to swim means facing our fears

    Ashlynn is 14 years old. It’s almost unbelievable to me that a decade ago, an entire TEN years ago, we almost ended up a tragedy. It’s so traumatic even now I can never re-read the post. I‘ll link it here, but I’ll never re-read it. I don’t need to. It’s forever branded on my brain like a tattoo. She was four at the time. I still don’t know if she remembers it. If she does, I have no idea if it affects her. However, I have my theories.

    After the incident, Ashlynn did get back in the water. We all knew how important it was long term. I remember writing another post about that. I won’t re-read that one either. Learning to swim is such an important life skill. We kept on keeping on.

    After the incident, she never attended group lessons again. I hired the swim instructor and paid him privately for at least two years before the pool policy banned private swim lessons. I then switched her to recreational adaptive swim teachers. It seemed to be working, but then COVID hit.

    During COVID in 2020 through 2021, my husband and I booked hotel rooms as “outings.” We always chose ones with pools and tried to teach her ourselves. She had so many successes, but nothing carried over.

    My husband and I are water lovers. It’s weird to say because we live in the land locked state of Colorado. However, we find home at our “Colorado beaches” aka reservoirs. We spend our summers at campgrounds that have lakes attached to them so we can play on our jet ski.

    Ashlynn, even at an older age is VERY good about wearing a life vest. She doesn’t fight or argue, but still. She doesn’t know how to swim.

    This year, a client of mine who is her same age started Special Olympics swimming. His mom gave me all the info and I signed Ashlynn up. I wasn’t sure it was going to work. The coordinator was concerned she doesn’t really know how to swim and was worried about keeping her safe. She said the option of a 1:1 helper wasn’t available.

    I understood. Ashlynn is 14 now. Even specialized swim schools won’t take her because of her age. I left that night feeling defeated. We had helped Ashlynn triumph through soo much! Riding a bike! Reading! Getting on stage! Dancing! Learning to swim just didn’t seem to be in the cards.

    I emailed afterward and she told me to come back. She said she re-arranged some swimmers and had a plan to keep everyone safe. We showed up tonight, and there was a woman who had a son who was swimming independently and while she was watching she volunteered to help keep any other swimmers safe. That woman was assigned to Ashlynn. I could breathe. I felt my anxiety disappear, and honestly I think my anxiety holds Ashlynn back. She constantly ‘checks in” with me and if I don’t look completely relaxed, Ashlynn panics.

    Life is so serendipitous. As I watched my daughter with this woman a man with his child came up to take their picture. The man literally works in the SAME office building as my speech therapy practice. I was filled with awe at the Universe and then INSTANT gratitude. What were the chances?

    I KNOW Ashlynn can learn to swim. I KNOW it. It’s been a long, hard and complicated history. However, I KNOW she can. This is her year. Love you girl. I’m your biggest fan.

    Love,

    Mom

    Learning to swim
  • Keep shining, the world needs your light

    Keep shining, the world needs your light

    When you have a child, you expect to teach them about the world.

    When you have a special needs child, you realize you have to teach the world about them. When you have an Ashlynn, like I have, you realize Ashlynn has something to teach the world.

    I didn’t expect to be the parent of a child with a rare genetic mutation.

    I had never considered two very important words to the human body called “motor planning” that if impaired, affect everything a person goes to do.

    I never thought my child would struggle to speak. Struggle to walk. Struggle to run or skip. To read. To write. To pay attention. To understand. I never expected any of these things and when they came each one felt like a small storm over my life. Did you notice I said MY life. That’s because even though the storm was happening to Ashlynn, she has never acted like there was a storm.

    Ashlynn has always attacked every obstacle with a smile and positive attitude. And because of this, she has grown, thrived and conquered.

    There have been many times I have had anxiety.

    I am human and have hurts, pain, disappointment, fear, anxiety or trepidation. Each time I have though I look at my daughter who has every reason to have a negative attitude, yet she never does. She has some natural superpower to turn lemons into lemonade.

    The 2020 COVID pandemic is one of those times.

    Though I try to shelter my kids from the news to reduce anxiety, it is somewhat unavoidable. Though they have taken daily bike rides with dad and walks with mom, the obvious cloud of social distancing hangs over our heads. The days blur. Ashlynn has said numerous times she misses her teachers and has shed tears. Always though and I mean ALWAYS, she will follow it up with a “but.” For example, tonight taking a shower she said,

    “This is hard mommy. I miss my teachers because of the corona virus.”

    I acknowledged that it was very hard but reminded her we do hard things. She always responds with a “but” that bridges to a positive. Tonight it was “I miss them BUT we can zoom them and see them that way and next year in 5th grade I will see them again.”

    I smiled. A song somewhere in my memory bank played “always look on the brighter side of life.”

    During this pandemic, she has asked daily to take walks.

    I have to admit that so many times I want to say no. Even though my intellectual brain knows exercise is the best medicine, I have an internal protest. However, I never regret going. Today she tripped over something because she was staring at her fitbit and she burst out laughing. She was in hysterics that she rolled her ankle because she wasn’t paying attention. Girlfriend has ADHD and dyspraxia that contributed and instead of getting upset, she laughed at herself. And her laugh isn’t a simple laugh. It’s full and rich and contagious.

    I thought I would teach my child about the world, but turns out she had something to teach us. My sister once said she spreads sunshine wherever she goes and I can attest this is true. Keep shining Ashlynn Kay, the world needs your light.

  • Will you push me, Mama?

    Will you push me, Mama?

    “Will you push me, Mama?”

    Lying on the couch after work, mindlessly scrolling social media when my sweet nine year old daughter says, “Will you push me on the swing, Mama?”

    I’m a pediatric speech/language pathologist and my job is AMAZING, but it’s also very demanding and zaps me mentally and physically by the end of the day. An introvert at heart, I need alone time to recharge and refuel. Needless to say, pushing her on the swing was not on my agenda for the night. However, as I looked into her bright eyes sparkling with hope, I put my phone down and asked her to give me five minutes. Enthusiastically she ran to the clock, figured out how long five minutes would be, and then bounded out the door.

    “Will you push me, Mama?”

    There was a time my daughter with apraxia couldn’t say “Mama” and had to go to speech therapy to learn it. Once she had words, she had to learn how to put them together to make a phrase because she also has a developmental language disorder. There was a time she had to go to speech therapy to learn how to add the /s/ to /s/ blend words, words in which an /s/ is next to another consonant as in “swing.” There was a time she had to learn how to use verb tenses correctly and once she understood and used verb tenses correctly, there was a time she had to then practice “interrogative reversals” in order to ask questions correctly. Those days seemed so long. The struggle seemed so long. Yet here she stood, effortlessly doing all those things as though she never spent hours in therapy offices learning how to do them. Here she stood asking to be pushed on the swing, something most kids were doing while she was working hard to find her voice.

    “Will you push me, Mama?”

    Though my daughter can pump her legs herself now and swing, there was a time she had to spend hours in occupational therapy and physical therapy before her core strength could even support the act of sitting up on and pumping a swing. Then, once she was strong enough, she needed more therapy to get the coordination of the movements down. As she got taller, she then needed to learn how to change the motor plan and move her ankles out to the side so her feet wouldn’t hit the ground. Yet, here she stood, able to do all of these things now but still asking me to push her. She’s nine years old. We are getting close to her never asking me this question again and the gravity of that sunk in. Would this be the last time she asked me to push her? My mind flashed back to her beautiful smile when she is swinging. She literally came out of the womb and hogged the swing in the nursery. The nurses all laughed and mused at the baby who was only happy in the swing. It never stopped there. I have numerous pictures, too many to count, of her swinging in various ages of her life.

    “Will you push me, Mama?”

    I thought about how swings go up and down and up and down and how Ashlynn smiles and giggles through it all. I thought about how swings are a lot like life in that way. Ashlynn has a lot of challenges. She has a genetic mutation called BCL11A that has caused numerous disabilities and her life is anything but easy street. If anything, it’s more like the swing in that there are ups and downs, successes and challenges. Through it all though, she smiles.

    “Will you push me, Mama?”

    I thought about all the areas I’ve had to push her. Sometimes I wonder if I pushed too hard. Did I let her be a kid enough? Will she only remember speech therapy, occupational therapy, physical therapy, and tutoring? Nights struggling through homework? Nights struggling through activities of daily living that are so hard for her, such as brushing her teeth or getting dressed, because I know she needs to learn to do them for herself?

    “Will you push me, Mama?”

    So on this cool summer evening in June, tired from work and craving alone time, I got up and pushed her for an hour that night in the backyard. We laughed and giggled and made up games. I reveled in the fact my daughter still wanted me to push her, and I prayed to find a balance in the future of pushing her not a breaking point, but further and further to her potential. Oh, and making sure we find time to keep smiling and laughing along the way.

    Laura Smith is a mother to two beautiful children, one of which was diagnosed with a rare genetic mutation that caused a multitude of learning challenges.  She is a Denver based Speech/Language Pathologist now specializing in Childhood Apraxia of Speech. To learn more visit SLPMommyofApraxia.com

  • Apraxia, dyspraxia, dysarthria and the link that tied them all together.

    Apraxia, dyspraxia, dysarthria and the link that tied them all together.

    Those familiar with my story know that I missed apraxia in Ashlynn because I was convinced she had CP (cerebral palsy).  She had a significant birth history and had to be pulled out via C-section and all of her motor milestones were late.

    Tummy time was a nightmare.  I was always so stressed about it because she literally seemed like she was suffocating and couldn’t pull herself up for air.  She would cry.  As much as I tried to prevent it she developed a flat head.  I remember asking the pediatrician if she needed a helmet but was told no. From 3-6 months she had developed a case of extremely pointy toes.  My friend affectionately referred to them as ballerina toes, but they were anything but cute.  I couldn’t get them flexed at all.  I kept thinking they just looked “spastic” to me; which is a term to describe very tight muscles in individuals with CP.

    When I brought it up to the pediatrician she said we could go to neurology or maybe I could just massage her calves every night in the bathtub and at her next baby well visit we would evaluate.  I decided to do that and if it didn’t work I would go to neurology.  I worked as a speech/language pathologist before she was born in severe needs classrooms and worked alongside physical therapists.  I did to Ashlynn everything I would see them do to our students.  By her next well baby visit, her feet could flex and she no longer had a standing ballerina toe pose.  There didn’t seem a need for neurology at that point.

    After that the rest is really history.  I received her diagnosis of apraxia right before her 3rd birthday, and then subsequently got her dx of dyspraxia, SPD, and ADHD through various OT places we went for therapy.  From that time on, I’ve accepted this was her diagnoses.

    Last year I decided I wanted to make sure I had checked all the boxes and got a referral to neurology.  It was not a good appointment.  You can read about here. They completely dismissed any chance of CP, but they did write orders for an MRI and genetics and those were two boxes I wanted to check off.  That all turned up empty.  They dismissed any neurological soft signs I had seen such as her pointy toes, flat head, and choking as a baby.  They actually dismissed dyspraxia and apraxia as well but that’s another story.  I let it go again because these are experts after all.

    That was until, a new development happened.  Ashlynn’s toes are curling forward to the point you can’t see her toenails because it looks like she is standing on them.  I took her back to the pediatrician who literally did not know who to refer me to.  She sighed a deep sigh and took a good 20-30 seconds to speak.  In the end, we decided on the orthopedic department at children’s, guessing it has something to do with her dyspraxia causing balance and coordination issues.

    As fate would have it, I’m telling Ashlynn’s symptoms to the mom of a client who has severe CP and dysarthria.  After I told her about our dr appointment and referral, she relayed to me that curling toes is common in CP, or any joint abnormalities for that matter, especially around the time of a growth spurt.

    My heart sunk.

    There is this feeling every mom can relate to.  It is this gut feeling that tells you when something is right and when something is wrong in your child.   At that moment, I immediately felt it. I knew that what I had thought all along was right.  Ashlynn has CP, and this woman standing before me knew of the person I should go see.

    She recommended I go to the rehab clinic at Children’s Hospital Denver who has a team of doctors who deal with this stuff.  I called this place in lieu of the orthopedic department.  The intake person went from being skeptical and asking me why I didn’t have a doctor referral to enthusiatically affirming she could get us in right away after I explained all of Ashlynn’s symptoms.  She then told me that me once Ashlynn was diagnosed, they can recommend the best plan of treatment.  When I got off the phone my mind was reeling.  What had I told that person that made their attitude change from skeptic to a certain dx?  I wasn’t sure, but at least I knew I was now on the right track to getting an accurate and complete dx for my daughter.

    I’m a firm believer that coincidences are put in our path for a reason.  It wasn’t a “coincidence” this client found me.  She had in fact been referred to me by Dr. Ruth Stoeckel, who had been my mentor at the Apraxia-Kids bootcamp. I was about to experience another coincidence that would light the path to the answers I was seeking.

    That same week I found out Ashlynn’s OT was leaving and a new OT would be shadowing her for the next two sessions.  When I went in, I told them both about Ashlynn’s new doctor appointment and that it was because I had always suspected CP.  The minute I said CP they both turned to each other, smiled, and then nodded in recognition.

    I’m sure when they looked back at me I looked angry.  Why on Earth would they suspect something like CP and not tell me?  I quickly had my answer.  The new OT had observed Ashlynn the week prior and after reading her chart suspected a mixed presentation of low and high tone.  She suspected it, because she herself had CP as well.

    My mouth probably dropped open.

    That was a lot to process.  For someone like me who believes coincidences are God’s way of telling us we are on the right path, this path was lit up like a Christmas tree and blinking.  I knew my initial hunches way back when Ashlynn was a baby were about to be finally confirmed, almost 9 years later.  I didn’t know what to feel.

     

     

  • 1st Day of 3rd Grade

    1st Day of 3rd Grade

    My dearest Ashlynn,

    Your courage amazes me daily.  It inspires me and pushes me beyond any limit real or imagined.  Today was your first day of 3rd grade.  You have been waiting for this day since the last day of 2nd grade.  Actually, quite possibly since the first day of 2nd grade when you told me,“After 2nd grade you I will be in 3rd grade!”

    I emphatically responded,

    “We need to make it through 2nd grade first!”

    We bought you a new backpack, new outfit, new shoes, and you got a new haircut.  Two out of the four items went as planned.  The backpack and new shoes went off without a hitch.  The other two? Well Ashlynn, it’s just not our style to have a few hiccups is it?

    Getting a new haircut is always an adventure.  Your dyspraxia, ADHD, SPD, and receptive language issues make following specific commands somewhat challenging don’t they?  I stepped in to help guide your head where it needed to go so the stylist would stop reminding you of how hard it was for you to follow those simple commands.

    Then came the new outfit.  We picked it out together!  I didn’t think we needed to try it on because I know what size you are and I was sure it would fit.  Last night we hung it up on your dresser anticipating the first day of school! However, this morning when you went to put it on you were more confused than ever.  I came into help and realized I had bought you a romper! That flowey material fooled both of us didn’t it!!  I could have sworn it was a dress.  A romper though?  Yeah, not a friend to the girl who has dyspraxia.  I apologized and offered other options in your closet.  We chose a pretty sun dress you hadn’t worn much, but I still felt bad.

    You took it in stride though!

    All morning you were jumping up an down and excited to go to school and I marveled at you.  School is so hard for you.  Last year you came home with bloodied shirts or completely different shirts because you had so thoroughly stained yours from picking your finger nails.  Almost every assignment you completed you struggled in, and many times you ate and played alone.  How on Earth were you excited to go back to that?

    Three days before we saw an ex client of mine who is your age.  Her apraxia is resolved and she has residual learning disabilities.  She told us how she didn’t want to go back to school because she was bullied and you sat there un-phased.   I thought to myself if I were in either of your shoes I would feel like my client; yet I was so grateful you are you.

    You have a strength and internal resolve I am working towards.  You have courage and resiliency I have yet to conquer.  Where my instinct is to run back your instinct is to jump forward.

    I am inspired by you.  I am always going to be here by your side.  I’m going to love you, but I’m going to push you.  I’m going to do everything in my power to help you obtain the tools you need in order to live life on your terms.

    It took me many years to believe and even more to practice this simple advice:

    Heck it takes grown men and women to follow this advice, and let’s face it.  Some die before they ever follow this advice at all. YOU embody this.  YOU are a living testament to this.

    Pursue it all Ashlynn!  I’ve always got your back and I’m your biggest fan!

    Love,

    Mommy

  • This school year, teach your children to be kind.

    This school year, teach your children to be kind.

    Fresh backpack, lunchbox, shoes and school outfit are waiting tomorrow for my child’s first day of school.  There is an excitement in the air as we bought school supplies and met her teacher last week.  She picked out her name tag like the other kids and picked her seat.  She flashed a big smile to her new teacher and chattered endlessly about school starting again and how she was excited to go back and to learn.  We went and got a new haircut and she told the stylist how she was starting third grade.

    Tomorrow I will take the historic first day of school picture. I will probably proudly post it on all of my social media accounts.  I will most likely scroll back and look at it a couple of times and wonder where my baby has gone.  I will marvel at how this school aged girl with long legs is standing on my front porch.

    That is where the similarities will end.

    As many parents cheer and are relieved to get back to a routine, I’m left with only nerves and trepidation.  The summers in my house are happy.  My daughter is a child who can explore the outdoors and experience life as a carefree and curious kid.  She plays with neighbor children until bedtime and explores campgrounds on the weekend.  She makes mud pies and collects dirt under her fingernails that need to be clipped and scrubbed frequently.

    Unfortunately school brings other stories.  The child who played carefree until bedtime with neighbors is the same child who is frequently seen sitting with her teacher’s aid (TA) at lunch and playing by herself on the playground.  The fingernails that grew long and collected dirt over the summer are replaced with widdled down nubs during school that are bit, picked and chewed so much that her shirts frequently come home bloodied or on some really bad days, have to be changed completely.

    The girl who chatted endlessly to family and friends is the same girl who is quiet and reserved at school, frequently clamming up when put on the spot or asked a direct question.

    The child who could explore during the summer and jump from varying activities is the same child who frequently loses focus and can’t concentrate on subjects at school.

    My child has invisible learning disabilities.

    Many of them.

    However underneath them, she is still just a kid like your son or your daughter.  She is curious.  She is friendly.  She wants friends.  She craves connections.  She’s excited to learn.

    This year as you talk to you children about their new teacher, new classroom, and new adventures, I beg you to talk to your kids about being kind.  I beg you to explain to your child that children with disabilities are just like them, but it might take a little longer to understand or get to know them.  If nothing else though, please just teach your children to be kind.  Maybe ask about something they did that was kind alongside your questions of who they played with or what they learned.

    Our kids will thank you for it!

    Sincerely,

    A proud mama to a child with hidden disabilities