SLP Mommy of Apraxia

Category: Childhood Apraxia of Speech

  • The true stars of Vegas organize the apraxia walk

    The true stars of Vegas organize the apraxia walk

    This weekend I was the guest speaker at the Nevada Walk for Apraxia and stayed with the walk coordinator Alyssa Hampson and her family.

    I flew in the day before the walk, and her house looked very typical of any other walk coordinator.

    It was bursting with items such as goody bags for the kids, prizes for the silent auction, food and beverages for breakfast, signage, T-shirts, and so much more.

    If you are a walk coordinator, or help coordinate a walk for any charity event, then you are probably very familiar with this typical décor that hijacks your living room the day before walk day.

    I am the mother to a child with apraxia.

    Being a walk coordinator is not just professional, it’s personal.

    I’m literally fighting to raise funds to go back directly to apraxia research , education, and programs so that each child who has apraxia in subsequent years has access to appropriate professional services.  It seems expected, or at least natural as to why I would have such as invested interest.  I’m fighting for my child and those like her.

    That’s why watching someone like Alyssa and her family was more than inspiring.

    Alyssa is the walk coordinator for Nevada, but she is also a wife of almost 30 years, a mother to two beautiful, young adult children (who don’t have CAS), and an SLP with a passion for Childhood Apraxia of Speech.  At her house for the past 3 years, the Walk for Apraxia has been a family affair.

    Her daughter came down from college with her friends to help Alyssa run the walk.  I was there because Alyssa had asked me to attend as the guest speaker.

    Lauren on the left with college friends to help out on walk day.

    The night before the walk, her husband helped pick up the bagels and balloons as her daughter printed out forms and signage that were to be used at the walk.  As I perused the silent auction items and game station activities, I discovered that Alyssa and her family had paid for much of these themselves.  As a fellow walk coordinator, I was struck by their generosity and willingness to spend so much of their own money to ensure the walk was a success.

    The day of the event was a full family affair, with another apraxia mom, Ashley Winter joining the crew with her husband.  Everyone worked diligently setting up an event that had been in the works for months.  Alyssa’s husband Dennis set up the silent auction, while his sister and their daughter’s friends helped decorate the park and set up for registration.

    Characters that had been secured such as a clown, the princess Elsa, McGruff the crime dog, and Deputy Dripp for the Clark County Police Department all showed up on time to provide photo ops and entertainment for the kids.

    I talked to many families and some SLP’s who specialized in apraxia and did my best to connect members from the community with each other.

    That is what these walks are about.  Community.

    The walk is the chance for families to connect with their people.  The walk is the place a family can go and not feel judged and just let their kids be themselves free from criticism.  There was one child who had to sit on the side watching the event for around 20 minutes before he felt comfortable to join in, and no one batted an eye.  There was another child who had a sensory meltdown during picture time and a parent looked at me and said,
    “ I want to just give her a universal sign that says, I’ve been there and I feel you.  You’re doing a great job.”

    Before the walk started, the coordinator Alyssa went live in her event facebook group and talked about the day to come.  Another apraxia mom in California commented that she was moved to tears that Alyssa was an SLP, not a mother, but who still was coordinating the walk.  Alyssa didn’t know why until I explained.

    Alyssa with one of her clients

    As a mother to a child with apraxia, my motive for coordinating the walk is clear.  I walk for my daughter.  For Alyssa, she has developed a special bond with kids like mine, so much so that it compelled her to donate and volunteer her time for kids like MINE.  For kids like YOURS!  It’s touching that a therapist cares so much for kids with apraxia that she is willing to give up her personal time, energy, and money to coordinating a charity even like that for the Nevada Walk for Apraxia. It’s amazing that she in turn inspired her entire family to do the same!

    Usually my favorite part of the walk is the medal ceremony, where the kids are honored with medals for all the hard work they put in every day to learn how to do the one thing many of us take for granted: learn how to speak.

    That was still a great part, but at the Nevada Walk for Apraxia this year, I had a different favorite part.

    I witnessed a family brought together by the shared mission to help kids like mine.

    They had no personal investment accept that the matriarch of the family was passionate about these kids and in turn, had made them passionate too.

    I marveled at her sister in law who made the beautiful crafts and decorations like the photo booth picture frames.  I looked on in amazement as her daughter, clipboard in hand, managed the day of event details with professionalism and meticulousness.  I looked on in admiration, and also amusement as her husband manned the silent auction and was so invested he took every donation personal.

    “No one is bidding Alyssa,” he exclaimed in his New York Accent.  “Whatevah, it doesn’t mattah,” he continued.  “If no one buys it then we will just buy it and that’s it.  We’ll buy it all and forgettah about it,” he said before storming off.

    As much as I was amused by his accent, I was more inspired by his passion.

    What did this man care that no one was bidding?  He didn’t have a child with apraxia. He only had client stories from his wife, but he had also become so personally invested and fell such in love with kids like mine that the success of the silent auction to benefit apraxia was now personal to him.

    Alyssa and Dennis

    Where did people like him come from?  I was amazed and touched.  My daughter and others like her benefitted from a New York Jew (his words not mine) living in Las Vegas who cared about kids like mine.

    How can one NOT be touched by that?  How can anyone who loves a child with apraxia not be touched by the dedication of this family? What is more, is how are families who DO have a personal interest in apraxia NOT this dedicated to the cause?

    It’s inspiring and the walks for apraxia around the country all have a personal and unique story like theirs.

    As I was leaving today, Alyssa pointed out that it was Rosh Hashanah.  Other than knowing it was a Jewish Holiday, I asked her the meaning of it. She sent me information that read,

    “Rosh Hashanah marks the beginning of the Jewish New Year.  We review the choices we have made over the past year, our actions and our intentions, as we attempt to honestly evaluate ourselves.”

    I couldn’t help but think of how symbolic it was to have Rosh Hashanah fall on this day I met a Jewish family coordinating the Walk for Apraxia.

    My friendship with Alyssa and her family grew this weekend marking the beginning of what I knew was great things to come in the future.  In addition, as a time of reflection and introspection, I hope that when her family evaluates themselves this holiday, they are proud for all that they do in their small part of the world raising funds and awareness for children with apraxia.

    I was blessed this weekend to get to know Alyssa and her family more intimately than I ever had. In the spirit of Rosh Hashanah, I spent time on the plane reflecting on my last year and my choices, intentions, and actions.   Am I living my life with authenticity? Am I true in my intentions and my actions? This is a great task for any of us to participate in, regardless of if we are Jewish or not.

    Ghandi once said, “The best way to find yourself is to lose yourself in service to others.”

    This family is living proof. Will you be next?

    Shalom and L’Shana Tovah!

     

     

  • Finding our umbrella. The last piece of the puzzle.

    Finding our umbrella. The last piece of the puzzle.

    In my opinion, Ashlynn’s birth history was significant.

    No, she wasn’t born premature.  No, there wasn’t a dramatic rush to the ER.  However, I was failing to dilate or efface and the labor was taking so long that vaginal fetal electrodes were placed on her head.  In addition, every contraction brought concern to the fetal hear monitor.  My OB recommended at least three times that I get a C-section; but hopped up on drugs and determined to deliver my baby naturally, I didn’t read between the lines.

    When Ashlynn was three months old I started to become concerned about her toes.

    My friend affectionately pointed out her “ballerina toes,” but they were cause for concern.  Her feet were always in a pointed flexed position, otherwise known as “plantar flexion.”  If I tried to stretch her feet to what is known as a “dorsal flexion,” I was unsuccessful.

    At her 6 month well baby check I brought my concerns to the pediatrician. She offered two possible solutions.  I could get a referral to neurology, or I could stretch our her tight heel cords each night and at the next well-baby visit we could re-evaluate.  I chose the latter.

    I was an SLP working in the severe needs classrooms before Ashlynn was born.  I co-treated with PT’s and watched them massage and stretch out kids with cerebral palsy for at least two years.  I tried to replicate the same motions and massages in Ashlynn, and meticulously stretched her out every night in the bathtub for 6 months.  At her next well baby check, her heel cords were loose and we could easily get her in a dorsal flexion.  A referral to neurology no longer seemed necessary.

    Ashlynn continued though to be delayed in every milestone.  I was convinced it was Cerebral Palsy (CP). I worked with her every night doing a speech therapy approach called “language stimulation.”  I was exhausted.  Physically and emotionally run down from working each day, but I would look at my daughter’s smiling face and pull reserves out from the depths because she was by far my most important client.

    At around a year I took her to a PT I worked with who saw children with CP everyday.

    “I think she’s fine, Laura,” she said to me. She had her crawl, stand, and try to walk.  I was relieved, but still skeptical.  When Ashlynn started to pull up on furniture I noticed she would stand on her toes.  I immediately and diligently would relax her calves or physically manipulate her legs to stand flat-footed.  When she finally went to walk (very late at 19 months), we didn’t have a problem with toe walking.  I felt relieved at the time; but little did I know I had successfully suppressed all the soft signs of CP through my training and experience with children who had severe needs.

    I’ll never forget her Child Find Evaluation shortly before she was three.

    I had been working with her every night on speech, and the progress was less than amazing.  I wanted to turn back a million times, but knew I had to take her to this evaluation to get her qualified for extra services. The diagnosis of apraxia smacked me hard in the face.  Though I instantly knew it was true, I was mortified I had not thought of it until that moment.

    I grieved.

    I had a difficult time looking myself in the mirror after that.  All questions of CP had been ruled out and I had missed a diagnosis of apraxia in my own child.  I was beyond disappointed and angry in myself. I struggled to look at myself in the mirror.  My confidence was shattered and I questioned as to whether I was really helping children or not.  I didn’t know it at the time, but looking back I think I was deeply depressed.  I decided during that time that I had to do something with this situation.  I could sit in sorrow, guilt and regret; or I could turn all this pain into a purpose.

    I started my blog and my mission to specialize in apraxia.

    During this time period I was PROMPT trained, Apraxia-Kids trained, and watched the Kaufman K-SLP method on video.  I became so fanatical about apraxia that I earned an award from ASHA for obtaining a crazy amount of continuing education in a short period of time.  During this time, Ashlynn improved and I finally started to be able to look at myself in the mirror again.

    Ashlynn went on to receive additional diagnoses of: dyspraxia, ADHD. SPD, and dysarthria at this time through various professionals.  I had accepted that Ashlynn seemed to have “global apraxia,” which is a term for kids who seem to be globally impacted by motor planning issues.

    I sought expertise from neurologists who ordered MRI’s and genetics but came up empty.   I knew from an article I had read once that in some circles, global apraxia was considered a type of CP; but no one would believe me.  I had settled on global apraxia, aka apraxia and dyspraxia until….

    At the age of 8, Ashlynn toes started curling forward.

    I had noticed it, but hadn’t done anything about it until her Grandma told me that she noticed it and Ashlynn told her they hurt.  Concerned I took her to her pediatrician who was completely stumped.  She did refer to me the orthopedic department at Children’s and I felt I was on another wild goose chase to figure out why Ashlynn’s feet were acting like this.  That was until a mother to a client I have with CP told me that toe curling is common is kids who have CP during the time of a growth spurt.  She referred me to a specific doctor at Children’s Hospital Denver called a “physiatrist.”

    I scheduled the appointment and arrived early with Ashlynn.  Trying to shake off nerves we played on snap chat and laughed.

    d.

    I was so proud of her pucker in the second picture because puckering has been a task that has been traditionally something that is difficult for her.  Finally we were called back and ushered to our examination room.

    The doctor and resident came in skeptical.

    They asked me why I was there and when I mentioned CP they looked at Ashlynn and seemed pretty dismissive at first.  CP?  Why on Earth did I think this girl sitting before them had CP?  I soaked in her skepticism and it killed me. Great.  Here we go again.  Another person who doesn’t believe me.  She had Ashlynn walk down the hallway away from us.  Ashlynn was scared so I walked with her.  The next task was to run and the doctor instructed Ashlynn to run by herself and explained she needed me to stay behind.  As Ashlynn ran ahead this woman began a running commentary of medical jargon I was desperately trying to keep up with.  She was talking to both me and her resident.

    “Notice the Pie Pan arm hold as she runs.”

    I looked at Ashynn’s peculiar arm and finger posture.

    “Sweetie will you skip now?”

    Ashlynn skipped happily down the hallway and Pam began her expert observations,

    “Notice how that pie pan hold switched sides.”

    Ashlynn returned.

    The rest of the evaluation went much the same.  I watched on in disbelief.  Somewhat invested but still skeptical, they had Ashlynn take off her socks and shoes and repeat the exam.  As she ran down the hallway, what had been no evidence of toe walking with shoes, revealed a slight toe walk without shoes.  I was in awe of Pam’s expertise and knowledge.  Her observations and running commentary were impressive.

    Back in the exam room the revelations were revealed.

    They tested all of her reflexes and Pam remarked how all of her reflexes were “brisk,” which was code for “not normal,” and observed that all of Ashlynn’s primitive or baby reflexes were still present.  When I questioned her she explained that children with CP never outgrow those early reflexes and will retain them into adulthood.  I was fascinated.  I had OT reports from multiple places that described how Ashlynn hadn’t lost her primitive reflexes, but I didn’t realize it was due to a possibility of her having CP.

    I knew from my apraxia blog groups that some kids with global apraxia received a dx of “ataxic cerebral palsy” early on.  This doctor had Ashlynn touch her own nose and then touch the doctor’s finger.  Ashlynn did well with this.  The doctor immediately ruled out ataxic CP.  I asked her if a child could improve on that task with OT (since Ashlynn used to be bad at that but has had therapy) and she shook her head and said there was no way Ashlynn had ataxic CP.

    Ok. I wasn’t even offended.  My mommy gut was telling me this woman knew what she was talking about and I was in the exact spot I needed to be.

    The next test, from a lay person’s view, seemed to be the most definitive diagnostic marker of the evaluation.  It was a “clonus test” that is done at the foot and ankle level.  I could google it and come up with this amazing medical definition, but I want to report this as a mom.  As they were testing reflexes, one reflex test they did put Ashlynn right back into those ballerina toes I saw as a baby.  They then tried to push up on her foot so she could achieve a dorsal flexion, and her foot started pulsing.  Apparently, pulses beyond 2-5 are considered abnormal and Ashlynn was at an 8 or above.  It was so significant, they couldn’t get her out of it without changing her body position completely.

    It was after this the treating MD told me that based on Ashlynn’s pie pan hand posture when running and clonus in the ankles, she exhibited symptoms consistent with dystonic cerebral palsy.

    I gasped.

    It wasn’t a gasp of pain or sadness.  It was…relief.  I couldn’t believe someone listened to me.  I couldn’t believe that after almost 9 years of knowing this was what Ashlynn had, it was only now being diagnosed.  I beat myself up for years missing apraxia.  It was so bad, it was what made me specialize in it.  I couldn’t look at myself in the mirror.  It was a big blow to my self esteem as a professional.  I thought I was a good SLP and then I had missed apraxia and CP was ruled out and I felt incompetent.  The guilt was overwhelming.  I did everything in my power to make up for the error.  I specialized in apraxia, received awards related to apraxia, and helped my daughter every way I knew how.

    To find out now that I had been right all along was a feeling I can’t put into words.  It had come full circle.  I actually did know my stuff  back then, but this experience with Ashlynn shot me to a place with apraxia expertise I could have never imagined.

    I was talking with a client I had who brought their daughter with diagnosed CP into see me for a differential dx over a year ago, and was telling her the story. Our stories our reversed.  Her daughter immediately received a CP dx, but no one believe her daughter had apraxia until she came to me to get a differential dx.  She said exactly to me what I said to that doctor.

    “So you believe me??  I’m not crazy?  Oh my gosh!! Oh my gosh!!!  I freaking knew it.”

    She went on to tell me this day that she was thankful that I didn’t know Ashlynn had this rare presentation of CP, because I probably would have went all in on the CP awareness train.  Instead, I went all in on apraxia and because of it; her daughter got the right dx and subsequent treatment she needed to find her voice.

    I had to agree that she was right.

    In the end, life has been a journey with my Ashlynn.  However, I actually and finally feel like all the pieces to her “puzzle” have been found.  A good friend said it best when she told me,

    “You found your umbrella.”

    I didn’t cry at any point during the evaluation or dx.  After we left I called my husband, mom, and mother in law and explained the findings over the phone with Ashlynn in the back seat. When I hung up my last phone call I heard this little voice ask,

    “Mama?  What do I have?”

    I didn’t expect to tear up when I answered her my voice cracked and I said, “Baby, you have cerebral palsy, or CP.  It doesn’t change who you are at all. It’s just something you have, like apraxia.”

    “That says Exit, Mississippi” she said right after, reading the freeway exit sign to our house; and in that moment, I knew everything was going to be okay.

     

     

  • 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

  • Old faces, new faces, and the passing of the torch

    Old faces, new faces, and the passing of the torch

    Last year at the apraxia conference, we honored CASANA’s founder in a tearful sendoff.  Throughout this past year, CASANA went through numerous more transitions, the main one being it’s no longer CASANA but renamed “Apraxia Kids” to reflect, no emphasize, the two most important things to the organization:

    Apraxia and Kids.

    Another major change was that Kathy Hennessey, long time director of education, also accepted a new position as executive director of a beautiful arts center in Wisconsin.

    Change is always hard and I for one think I took it particularly hard.  I watched this past year with skeptical yet hopeful eyes as an interim director gave way to the new executive director Angela Grimm.  I was pleasantly surprised that she had reached out to me personally to introduce herself and she gave me a chance to tell her my story and why CASANA, now Apraxia Kids, was so important to me.  That phone call meant a lot because I was able to tell this woman how myself and so many others in my community had benefited from the organization.  I was able to tell her why I had decided to spend countless volunteer hours devoting myself to being a walk coordinator in Denver, and I was able to express that I wanted to make sure Apraxia Kids was still going to be an organization I could stand behind.  It’s very important to me that when I get up on that stage and look out to the 400 Denver Walkers, that I still believe in my soul the mission of the non-profit I’m asking them to donate money to.

    International apraxia experts Dave Hammer and Ruth Stoeckel. Sad to see conference come to an end.

    Facebook and social media was another area I watched closely.  The founder and previous executive director Sharon, who is now my friend, literally built the base of the organization through social media.  Sharon had a unique way of connecting people in the community and so many parents of newly diagnosed children, like myself, found facebook, posted their fears, and were met with the compassion, love, and advice that only Sharon could give.  I wanted to make sure that whomever took over social media knew the importance of the role.  During the transition period, David Hammer, Vice President of programs, and Ruth Stoeckel who is a member of the Professional Advisory Committee, both stepped in to make sure parents were welcomed and given the warm and compassionate welcome they needed.  Soon, a new employee named Kara Bayer was hired to handle the social media aspects. I watched intently.  Though Kara didn’t have a personal connection to apraxia, she made sure to welcome every parent and respond to questions with philosophies reminiscent of Sharon’s comments that were always rooted in evidence-based practice.  During apraxia awareness month, Kara did something I had not seen done before.  She made a calendar with suggestions on how to celebrate apraxia awareness all month via social media outlets.  I absolutely loved the idea and participated!  I noticed that those in the community were participating as well.  The level of engagement was impressive and when you are trying to make an impact on social media, engagement is how you measure it! Kara has taken the position and ran with it and she’s doing a great job.

    Justin with three apraxia walk coordinators

    This year before the conference, Justin LeWinter, who is the director of fundraising and who had traditionally been the point of contact for all of the walks nationwide, organized a walk coordinator training along with his team.  This was the first time walk coordinators had a formal training in an effort to uniform our walks and learn how to make our walks more successful. Connecting the coordinators in this way made our role seem more formal and more important than ever.  The walks generate 2/3 of the revenue for Apraxia Kids!  2/3!!  Without us, the programs that Apraxia Kids funds and of which I am grateful for and believe in, would not be possible.  I was impressed with how much thought was put in the training and at how organized it was.  I was also pleasantly surprised by something else, something much bigger.

    I was impressed by the old AND many *new* faces of Apraxia of Kids that are the staff. 

    The entire staff, I felt, had a very real and deep understanding of just how much apraxia impacts the family.  They were sensitive, caring, dedicated and passionate.  They were all positive and had contagious energy. I am a sensitive one to energy.  Energy, positive or negative, spreads.  I couldn’t help but feel good about the future of this organization with new blood, new energy, and new enthusiasm like they had.  They definitely re-energized me and come August I know I can confidently tell my community we are raising money for the outstanding organization we all found it to be to begin with.  Yes, many old faces were missing and their presence, particularly that of Sharon’s was still felt by me very deeply.  Sadly though what I realized, the old faces aren’t the future.  As I met, talked with, and listened to all the new faces, I smiled because I realized these *new* faces are the future.

    I was also able to talk to many *old* faces (I’m not calling any of you old, just need a word for comparison sake!) still around such as Mary Sturm, President of the Board of Directors, and Sue Frieburger, Board Secretary and the person who started the walk 15 years ago.  I was able to listen to the stories and the legacies and I realized that though much had changed, the most important thing hadn’t changed at all.  Apraxia Kids is still full of dedicated parents and professionals who come together, share stories, and who develop instant friendships from our shared experiences.

    There was David Hammer,  Vice President of Programs and international apraxia expert who introduced the keynote: There was esteemed researcher and clinician Jonathan Preston, who delivered the keynote:  The next morning there was the panel of national and international apraxia experts that presented many of the various treatment approaches to all the attendees:

    Amy Clark, Margaret “Dee” Fish, Nancy Kaufman, Ruth Stoeckel

    Then there were the new wave and faces of “bootcampers” present, who are graduates of the Apraxia Kids intensive training institute.  I have so much respect and love for this group of amazing, dedicated and passionate professionals who have made serving kids with CAS and their families a top priority.  This group below comprises two of the veteran faces, David Hammer and Ruth Stoeckel, among the faces of up and coming experts around North America, and I say North America because three of them are from Canada!

    At one point I looked around at the buzzing open area and I took a deep breath and smiled.  Sharon’s decision to step down was based out of selfless love for the non-profit she started.  Though I didn’t understand it at first, I understood now.  Apraxia Kids is still the organization it was.  A group of passionate professionals and experts who come together to network with parents and to arm them with knowledge, community, and power.  Though I personally felt Sharon’s loss, I now could be that same hope she had given to me and in turn give back like I always wanted to do.  Michelle of Apraxia Mama Bear and Alyson Taylor of Girl With a Funny Accent were there also doing the same thing.

    When I got to my hotel room that night, I called Sharon.  The words of her friend and Apraxia KIDS president Mary Sturm were ringing in my head.  Mary told me that Sharon said she knew she had to step down to advance the organization further; and Mary compared it to that of mother whose child leaves for college.  You send them off knowing this is the next step to them becoming independent and successful adults despite the pain in your heart that wants them to stay.  You do this because you know it’s the right thing to do, but you still watch with baited breath and an ache in your heart.  You watch their every move and cheer them on every step of the way.  I thought that analogy was amazing, so that night I told Sharon what Mary had said.  I told Sharon I finally understood why she did what she did.  I was so mad and sad and basically a hot mess when she told me she was stepping down; however I understood now.  I understood because it was unfolding before my eyes.

    Before we said goodbye, Sharon left me with these words,

    “Hearing this makes me so happy.  So this is life, this is us.  You pass it on.  I love you and all the others who have committed.  I know you.  I was you, and one day you will meet someone and you will have this mutual admiration and you will know that they are the future.”

    Old faces, new faces, and the passing of the torch.  The selfless individuals who had been there before were still there giving back like they always had and a new wave stood by their sides ready to continue the mission. I have so much respect and love for the past, and I’m so excited for the future!

    The mission has never changed and was never about any one person.  It’s about Apraxia and Kids.

    Every Child Deserves a Voice.

    Let’s see this mission continue to spread!