SLP Mommy of Apraxia

Category: apraxia blog

  • 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!

     

  • Executive functioning home intervention

    Executive functioning home intervention

    Let’s talk executive functioning.  If you follow my facebook page SLPMommyofApraxia (click here), you already know we are making our house an executive functioning friendly zone and you might have read a prior post I wrote a  “What is Executive Functioning, and Why Do You Need to Know?”

    What does an executive functioning friendly zone mean exactly?  I decided to put all of it into a post so you can see and hopefully help others who may have children with similar issues.

    Before I begin, I just want to say this:

    Children with learning differences, many, many, MANY times benefit from the use of visuals.  There have a been a handful of cases in my career where visual aids actually confused the student more; but for the most part, visual aids benefit everyone.  This visual from northstarpaths really explains why:

    Executive functioning (EF) deficits are a common comorbidity with a variety of conditions including: ADHD, OCD, ID and others just to name a few.

    Visuals are AMAZINGLY helpful for children with EF dysfunction.   The problem is, most teaching involves auditory input.  The teacher (or parent) talks, children listen, and learning takes place.  For kids like my daughter, who have a language processing impairment, the teacher (or parent)  talking is basically the equivalent to the teacher in the Peanuts comic series.  All the children hear are “wah wah, wah wah wah wah.”

    Visuals bridge the gap.  I couldn’t say it better than Benjamin Franklin, who himself had a learning disability when he said,

    Aside from just visuals though, kids with EF dysfunction benefit from organization and time management strategies.  The following is what we currently have implemented in my home.

    Morning Routine

    The most recent example from my personal experience involved the steps to getting ready for school.  If I told Ashlynn what to do, she immediately forgot or I had to go through step by step and tell her, which is not promoting independence.  With the help of her SPED teacher, we made this visual schedule and she was successfully completing all of her steps without our help in about two weeks.

    Restroom steps

    We decided to make a visual schedule for completing bathroom steps.  Let me tell you that we have been working on remembering these for AT LEAST a year.  Last year in 2017, I sent her to Adam’s Camp and remember telling the therapists she can say all the steps but still is not consistent.  After Adam’s Camp she came home being able to sing them as well, and still, we could not get consistency.   So we made a visual schedule a little different than her morning schedule and it looked like this.

    This was NOT successful.  It probably has too many steps and it doesn’t have the nice left to right motion the morning schedule this, so I modified and made this.

     

    I’d be lying if I said this was a complete success right off the bat, but it has worked better than any other strategy to date and now that the summer has hit, we have made sure she has to go back and complete her steps every single time.

    Cleaning her room

    The next step was to tackle completing a basic chore like cleaning her room.  I can’t even begin to explain the difficulty with this.  What I do know, is that many adults with ADHD continue to struggle with disorganization into adulthood.  It behooves us now to help our kids develop strategies that are going to serve them well throughout their lives.

    The first step is to make sure everything has a place.  Classrooms are set up this way for a reason.  There is a specific space for each and every item that is used or played with in a classroom.  If not, things will inevitibely end up in a pile of clutter.  Ashlynn and I went through her room and designated certain drawers and bins for different things.  Everything has a spot.  There is a bookshelf, a lego bin, a writing utencil drawer, a baby clothes bin, you get the idea.

    I then created a visual schedule of each piece of furniture that she could check off as she went about her cleaning routine.

    I know it’s hard to read, but basically each furniture item is listed on the left, with a picture representation on the right of what it looks like done.  The picture on the bottom is a grand finale picture of what the entire room should look like clean after completing all of the steps for one last check.

    Next up was to have bigger picture velcroed to all of the furniture items so she could see as she was cleaning them what they are supposed to look like.  I know it seems redundant, but seriously if you have a child who struggles this, then you will relate when I say that a dresser with closed drawers looks fine with clothes hanging out of it to her.  Same with a picked up hamper.  I even have a picture showing what the closet should like closed and no that doesn’t mean it is closed until it hits the piles of crap.  It means actually closed and looking neat.

     

     

     

     

     

     

     

    I have to add that these helped, but still had to be taught.  In fact, it’s still a work in progress.  Some nights, I am so frustrated and just want to pull my hair my out.  I’m only human after all.  I do though, in those times, try and decompress and remind myself this is not a *fix* but a lesson.  Ashlynn doesn’t learn like other kids and that’s okay.  I have to realize though that all of this will pay off in the long run, and when we start early kids have the best outcomes.

    Homework

    Oh man don’t we hear horror stories about homework from parents of kids with varying learning differences.  Teachers make homework sound so easy.  Ten minutes for every grade you are in, so a first grader shouldn’t be more than 10 minutes a night.

    Say….what???  That assignment just took my kid an hour….and then when we went to second grade, that so called 20 minute assignment just took upwards off and on of two HOURS?  Minutes?  What?

    Know that homework can always be modified, but there are strategies that can be put in place to help with this too. Number one is to just start with a place that is going to make them successful for learning.  If you are like me, my first baby is the one with learning differences so instead of preparing for the ultimate learning environment, we were more focused on transitioning my son from a crib to a toddler bed and spent our money on that.  Needless to say, our kitchen table became her homework place.  Yes, the place that she eats and the chair in which she sits that her feet don’t touch on the ground yet is what we thought would be the perfect location for her to sit down and do that quick assignment in 10 minutes.  I should mention too it’s a thoroughfare in my house, so my kid with ADHD was also constantly distracted by the events taking place all around her.  Can we talk about set up to fail???

    I redid her room and created a homework corner.  I bought her a new desk in which she sat at a 90 degree angle, perpendicular to the floor, and decked it out with strategies from executive functioning queen Sarah Ward from the website Cognitive Connections.

    New desk with feet on the floor

    As you can see, I have her own desk, in a corner of her own room, that is quiet and in which her feet touch the floor!

    Get ready, do, done boards

    The colored board above the desk are suggestions from the cognitive connections website.  In the yellow, we write everything we need to get ready.  It might be as simple as a pencil and it might be more complicated if doing a project.  (To modify for non-readers, you can tape or velcro pictures that you need.).

    The green stands for “doing.” These are the steps you need to do to reach the finished project.  The finished project then is the red board and reflects what the assignment looks like when it is finished.  For lower level, you can put a picture of what a completed assignment looks like, or for readers you can simply write it.  Sarah Ward also recommends to “start with the end in mind,” meaning kid with EF deficits benefit from knowing what the end is supposed to look like and then working backwards. For a more elaborate description, go see Sarah Ward talk.  She’s amazing.

    Calendar

    We have tried a few different things to help Ashlynn learn time, and I’m not just talking time management.  Ashlynn has had a lot of difficulty learning the seasons, days of the weeks, the months, and understanding the difference between yesterday, today, tomorrow, last week, next week etc.

    I decided to buy this peeling dry erase calendar at target.  It’s huge and sits right by her desk.  Every month, she helps me write the month and the days.  We then go through and write her therapy/activity schedule and color code them.  Each activity is written in a different color.  The weekends are shaded on red since she has a difficult time understanding that Saturday and Sunday are one unit (the weekend) when they are split up on a normal calendar.  We then marked an X for each day that had passed and talked about yesterday and tomorrow.  This calendar has been AMAZING.  I might be so bold as to say it almost helped her understand days of the week right away.

    Her school though also hit this hard visually and created the following corner in the SPED room just for her.

    ‘

    This picture is also hard to see, but basically you see the basic calendar color coded by day in the middle.  To the left, each day of the week is color coded.  On the file cabinet on the right, the months are placed and she has to pick out the right month each day for added repetition.  The days are in the second bag, and there are tiles for the season and then arrows to talk about the concepts yesterday and tomorrow.  A normal calendar was provided as a reference to keep track of how her modified calendar related to a typical calendar.

    Timer

    Last to come is the timer I used for all of these tasks!  Time management is another HUGE skill that is difficult for those with EF deficits.

    The timer is from the autism community store here in Denver, but I’m sure you can find them on Amazon or other places.  This timer is amazing!!  The colors stand for different things similar to a stoplight.  Green means go, yellow means caution you are nearing the end, and red means you need to be done or stop NOW. What is best, is that each color is completely customizable by time.  For her morning routine, we usually set it for 3-3-3.  For homework, it might be  2-20-2.  Did I mention it also comes with sound?  So that means every color it changes to also has a sound to go with it, aka, an auditory cue.

    The impact

    I have to admit, there were times that as even I were making all of these materials and buying all these things that I wondered will this really make a difference?  Was all this work really worth it?? My answer came from Ashlynn.  As I was making these visuals, she probably thanked me more than 10 times.  She knows how she learns.  She was just waiting on me to help her.

    Laura Smith is a mom to two children, one of which who has multiple learning differences.  She is also an SLP (speech/language pathologist) specializing in CAS (Childhood Apraxia of Speech), a passion that was fueled by her daughter’s dx in 2012.  To learn more, visit slpmommyofapraxia.

     

     

  • Apraxia as a symptom to a bigger picture

    Apraxia as a symptom to a bigger picture

    When I started out on this journey, having my daughter receive the diagnosis of Childhood Apraxia of Speech was devastating.  Unlike other parents who might have needed it explained or who turned to google and realized it is a lifelong neurological disorder, being an SLP I already knew that.  My mind flashed to two boys I treated prior to Ashlynn when I was a school SLP, who both entered Kindergarten nonverbal and I was terrified.

    After I threw myself a pity party, I picked myself up determined to attack the beast named apraxia.  At the time as we were going through it, I did not fully grasp as I do now, the fact that most kids with apraxia will not only hold that one label.  I did not fully realize that most kids with apraxia, a neurological speech disorder, will also have co-morbid neurological disorders as well.

    As a professional SLP specializing in the field, I have a current private practice caseload of around 35 kids.  There is not one who doesn’t have another co-morbid condition.  Friends, I have to repeat that because it is important.  There is not ONE who only has apraxia.

    I feel now like this is an important topic to discuss because I don’t know about other parents, but for me I would have wanted to know up front that a diagnosis of CAS meant I was going to be dealing with more than CAS for the long haul.

    Why?  What does it matter?  You take each diagnosis day by day right?

    I struggle with this.  Part of me agrees but then part of me just wishes I had known the statistics were as high as they were for the chances that my daughter would have dyslexia, or ADHD, or SPD.  I say this because honestly, had I just known up front all of that was a possibility, I could have:
    1. Been more vigilant and more proactive about potential comorbidities
    2. Not been so devastated each time a new one popped up.

    In the post on ADHD I wrote:

    I know it’s a little too young to diagnose ADD, but I hope to God she doesn’t have that too.  She doesn’t deserve this..any of this.

    In the post on Dyslexia I wrote:

    In that moment, my dear readers, I had the same gut feeling I had when that SLP told me back when Ashlynn was 2:11 “Laura this is apraxia.”  In that moment, that article told me, “Laura, this is dyslexia.”  I started to cry at the end of that article.  Damnit.  I missed it again.  I missed another OBVIOUS dx in my OWN daughter.  Why does this keep happening??  What good was all my training and experience when I’m not applying it to my OWN baby??

    Ashlynn has a slew of other diagnoses as well, and EACH time I went through this process AGAIN.  I had to relive the pain of a diagnosis AGAIN.  I guess I can’t say if the pain would have been any less had I known all of these diagnoses were more of probabilities that possibilities, but I honestly think it wouldn’t have made each new diagnosis as gut wrenching.

    I was talking to Lynn Carahaly the other day, creator of the Speech EZ program for apraxia and apraxia expert out of Arizona,  and she said the following,

    Over my career specializing in the disorder, I definitely feel apraxia is rarely the primary issue, rather a sequela to a bigger picture.  The problem is SLP’s and parents are so focused on the speech and not looking at the big picture in early development.  There is this thinking that if we could just overcome the apraxia, everything will be OK.

    I let out a big sigh after reading that.  Anyone else who felt that way, will you raise your hand with me?  I fell into that category.  I was so convinced if we could just fight and beat this beast called apraxia, everything else was going to be okay, and man I was wrong.  Consequently, each new diagnosis brought this sense of total indignation.  We fought apraxia and WON!!  Why now did she have to deal with something else?

    I take a different approach now with my clients.  I am completely honest and transparent about the potential for co-morbid issues.  In fact, I told one mother the other day,

    Your daughter is at risk for dyslexia.  I recommend that for now we operate under the assumption she might have it and get her started early with pre-literacy and phonemic awareness activities; and if she doesn’t have dyslexia, we celebrate.

    I’m just giving parents, and now all of you, what I personally would have wanted to hear.  Lynn is right, and that’s why her program incorporates so many pre-literacy elements.  Let’s start looking at apraxia as more than just a speech disorder, and let’s celebrate if the child did indeed only have apraxia.   Once I started connecting with parents of kids who have global apraxia, only then did I realize every child with global apraxia had a co-morbid diagnosis of ADHD.  The same was true when I found the apraxia-kids facebook group and realized just how many kids with apraxia also had Sensory Processing Disorder!  Oh, and when I found out that and started talking to my global apraxia friends, just how many kids with global apraxia had a similar and rare presentation of sensory processing disorder in that they had a high tolerance for pain and an “under-responsive” tactile system!

    Parents and professionals, the moral of the story is this.  In most cases, apraxia is just a foreshadowing of additional neurological conditions to come.  There are many, MANY, combinations it would be impossible to predict at that initial CAS dx.  Dr. Ruth Stoeckel did a talk at one apraxia conference titled “Co-Occurring Diagnoses: Other Letters that may go with CAS.”  There are MANY other conditions that can and DO go with CAS.  I think it benefits parents and professionals to know we are dealing with just the beginning of what is probably a very bigger picture.

     

    Resources:

    Duchow, H., Lindsay, A., Roth, K., Schell, S., Allen, D., & Boliek, C. A. (2019). The co-occurrence of possible developmental coordination disorder and suspected childhood apraxia of speech. Canadian Journal of Speech-Language Pathology and Audiology.

    Iuzzini-Seigel, J. (2019). Motor Performance in Children With Childhood Apraxia of Speech and Speech Sound Disorders. Journal of Speech, Language, and Hearing Research, 62(9), 3220-3233.

    Langer, N., Benjamin, C., Becker, B. L., & Gaab, N. (2019). Comorbidity of reading disabilities and ADHD: structural and functional brain characteristics. Human brain mapping, 40(9), 2677-2698.
    Lewis, B. A., Freebairn, L. A., Hansen, A. J., Iyengar, S. K., & Taylor, H. G. (2004). School-age follow-up of children with childhood apraxia of speech. Language, Speech, and Hearing Services in Schools.
    Miller, G. J., Lewis, B., Benchek, P., Freebairn, L., Tag, J., Budge, K., … & Stein, C. (2019). Reading Outcomes for Individuals With Histories of Suspected Childhood Apraxia of Speech. American journal of speech-language pathology, 1-16.
    Teverovsky, E. G., Bickel, J. O., & Feldman, H. M. (2009). Functional characteristics of children diagnosed with childhood apraxia of speech. Disability and Rehabilitation, 31(2), 94-102.

     

    Laura Smith, M.A. CCC-SLP is a 2014 graduate of Apraxia Kids Boot Camp, has completed the PROMPT Level 1 training, and the Kaufman Speech to Language Protocol (K-SLP). She is the author of Overcoming Apraxia and has lectured throughout the United States on CAS and related issues. Currently, Laura is a practicing SLP specializing in apraxia at her clinic A Mile High Speech Therapy in Aurora, Colorado. 

  • Report cards are bittersweet with special needs

    Report cards are bittersweet with special needs

    End of the year is here! Summer is around the corner and the excitement of summer is palpable. There is something else though that is tangible I hold right before the excitement of summer.  It’s a small manila envelope that holds the children’s report cards.

    When I was a kid, I LOVED report card season.  My report card was always glowing.  I couldn’t wait to take it home and show my parents who would shower me with accolades and possibly reward me with ice cream.  I could not WAIT to open up that envelope and see the delicious and positive contents hiding inside.

    Ashynn, my first born child with apraxia and related learning disabilities was the second time aside from myself that I had looked at report cards.  I remember opening up her first one and feeling like someone had sucker punched me.  Despite her working hard every night, and going to therapy almost every night, the scores were more than concerning.  The grades were absolutely devastating.

    Yes I KNEW she has on an IEP. Yes I KNEW she had a modified curriculum and the report card shows her performance based on same aged peers.  Yes, I KNEW that.  It didn’t make the blow any less intense.   How was it fair?? While other kids played soccer or did gymnastics, mine spent every spare minute in a therapy and yet she was still behind.  Again I ask you, “How is that fair??”  As she went through first grade I started taking longer and longer to open that envelope.  You have to work up to putting yourself through that kind of pain again.

    Ashlynn is in second grade now.  Her manila envelope aka report card was sent home first.  I saw it in her backpack. Yes, I saw it.  I never pulled it out.  Why would I?  I know what I’m going to see.  I’m going to see that in spite of the fact that she has therapy after therapy and tutoring after tutoring after school; she remains dificient in most areas of her life. Despite her positive attitude, her resiliency, and her stellar attention to task and work ethic in therapy…she has true disabilities that will persist throughout her entire academic career and will be highlighted by the scores on her report card.

    Yeah so that report card. It kinda makes me sick.  I have to work up to reading it and it usually takes a couple of weeks.

    One day later a same manila looking envelope ended up in my son’s backpack.  I found myself excited and ready to tear into it!  I had a hard time waiting until we drove home.   I was over the moon to read the narrative,

    “It has been a pleasure to be Jace’s Kindergarten teacher.  He is outgoing, inquisitive, and comes to school excited to see his friends. He is a hard worker and determined to do his best. He takes great pride in his work.”

    I looked at the description with awe.  The same could have been written about my daughter with disabilities, yet, this person, MY SON, had scored all three’s (A’s) and my daughter still remained far behind.

    My daughter is outgoing, inquisitive and loves to see her friends too.  She is a hard worker and is determined to do her best.  She takes great pride in her work too.

    The next morning I received a text from her special education teacher.

    “Did you read A’s Progress Report yet???”

    I had been caught.  I felt ashamed, but I wrote back honestly and said,

    “Looking at her report card is so painful I have to work up to looking at it.  It usually takes a week or more.”

    She wrote back that after her IEP in March she had completely revamped her programming and she encouraged me to look at it.  I thanked her and sighed a heavy sigh.  I wanted to see all the progress which would be on the special progress reports that are added to the report card based on her IEP (Individualized Education Plan) goals, but I would have to look at the report card too which I knew still had low scores.  I looked at the two manila envelopes lying on the floor in the living room.  One opened, and one un-opened.  I want to read all the wonderful progress, but I’m just not ready to get punched in the gut today with the other papers sitting behind it.

    Not yet.

    I will.

    I promise I will.

    I just can’t face it yet today.

  • Diagnosis, Disability, and Finding your Tribe

    Diagnosis, Disability, and Finding your Tribe

    ​Parenting children is hard.  That isn’t a secret.  Parenting a child with a disability has even extra challenges that shake us to our core.

    I have a daughter with special needs and numerous learning challenges.  When she was almost three, she received her first diagnosis of Childhood Apraxia of Speech, a rare and severe speech disorder in children.  That was the beginning of many a “dark day” in my parenting journey with her.  I remember putting her in her car seat, tears in my eyes as her bright blue eyes smiled back at me and seemed to ask, “why are you crying?”  I sobbed that day.  I cried for so many reasons.  Fear, uncertainty, guilt and confusion.  I texted a friend I was devastated, and I truly felt like I had the wind knocked out of me.

    Slowly I found a community of parents who had children with apraxia as well; and I started to feel hope again.  I started to believe what was possible for their children was possible for mine as well.  I found my tribe, as I like to say.  All these parents understood me, my daughter, our challenges and the significance of our small successes!  I discovered there was a walk to honor kids like mine and spread awareness.  I connected with others in my community and no longer felt alone.  I no longer felt devastated but instead felt blessed by the friendships I had formed.

    My daughter has went on to receive multiple and additional disabilities since that first one of apraxia.  I can’t lie.  Each new diagnosis, report, or low test score feels like a punch in the gut all over again.  However, we have our people now.  We have our tribe.  We have others who understand.  They understand that sometimes you are in such a state of deep grief you can do nothing else but cry and cannot face the world that day.  We also know that stage doesn’t last, and when a member of our tribe is down, we will rally around them and be ready to pick they back up when they are ready to face the day again.

    I learned that some of my darkest nights were followed by the most glorious sunrise; and I found that sunshine in the community around us.  No one should suffer alone.  No matter the struggle, we should all find others who understand our unique situation in the world.  For us, community was the light that found its way into the dark tunnel of grief and showed us the way out.

  • An open letter to the well meaning “I’m here for you.”

    An open letter to the well meaning “I’m here for you.”

    May is Apraxia Awareness Month and Mental Health Awareness Month.  From the surface, it does not seem like they have very much in common.  Apraxia is a rare and severe speech disorder in children, and mental health has to do with, well mental health.  Ironically, they are the two conditions I write about the most.

    I like and do believe that most people are good. Regardless though of how good of intentions a person may have, I think we many times miss the opportunity we actually want to have happen.  I learned this the hard way unfortunately, when I wrote a popular piece on The Mighty for suicide prevention entitled “The Two Word I Would Have Told My Friend Who Died By Suicide.”

    In this piece, I lament that had my friend just called me I would have been there.  I say this as complete truth.  I know I would have.  I just would have.  Unless I had been gravely ill or incapacitated, had my friend called me during her time of crisis I would have been there.  Who could argue I didn’t have good intentions?  Well to my surprise, many did actually.  Many people pointed out that a person with depression isn’t going to reach out to anyone because they already feel like a burden.  Many people pointed out had I really wanted to help her it would have been I that would have reached out instead.  Oh, and not just reached out and asked, “How can I help you?”  No, not that.  I should have kept reaching out and reaching out because depression is insidious, trapping the person inside.

    Obviously, that was a hard pill to swallow.  However, Maya Angelou once said, “When you know better, you do better.”  In other words, there is no point in feeling guilty about the past because you didn’t know; but once you know, you have an obligation to do better in the future.  Knowing what I know now, I would have kept reaching out.

    This may seem like an odd jump, but the same is true when it comes to mothers to a child with a disability, or heck, the person WITH a disability.   The road is HARD.  That doesn’t mean we would change the road, or wish we had a different car for the road; but it is hard and many times lonely road.   Even close family members will not understand the struggle.  For all those of you telling your friends things like “I’m here if you need me” or “Call anytime” or “Let me know if you need a break.”  I’m asking you to just assume they do and go help them.  Show them that you are there for them.  Offer a day and time you are taking their kids or bringing them coffee and just going to have an adult conversation with them.

    No one, whether it is depression, special needs parenting, or being the person with a disability wants to feel like they are a burden or imposing themselves on anyone.  SHOW them you are there for them.  ACTION.  This is blunt but true.  No one cares what you say, they care what you do.  If you, or me, or anyone else really means “I’m here for you,” then do it.  Show it!

    Currently, I feel like people don’t understand another person’s plight that is not their own until they experience it themselves.  A person who has never had depression doesn’t understand why a person with depression wouldn’t reach out.  A person who has never had a child with special needs, doesn’t understand how difficult it is until or unless they have a child who has a disability.  A person who has never been a single mom doesn’t understand how difficult it is to be a single mom unless the person goes through being a single mom themselves.

    This doesn’t have to be the case!  In this age of the internet and information and knowledge at our fingertips, we have an even greater chance at becoming better people.  We may not know first hand the experiences of others, but we can read about them and then take actions to improving, enriching, and enhancing the lives of each other.

    I could have been indignant that those who actually had depression told me my well-meaning “had she just called me” didn’t hold any weight; or I could learn from it.  I chose the latter and I know that in the future, if I ever think anyone is struggling again I won’t wait for their phone call, but will deliver it myself.

    Le’ts let this age of information make our lives and the lives of those around us better, because knowledge is power and we have knowledge at our fingertips. If we know that it is a universal truth that everyone in this life will have or will be going through some sort of struggle, let’s choose to be kind and not simply say “we are here if you need me,” but take the actions that show others we truly care.

    Let this Apraxia Awareness Month and Mental Health Awareness Month not just be a crazy coincidence, but a reminder that everyone on this planet is experiencing joys, fears, heartaches, and love and that is simply this thing called LIFE.  Beyond the “I’m here for you,” let’s let this month be a chance for us to show it through our actions.  Mark Twain said, “Twenty years from now you will be more disappointed in the things you didn’t do, than by the things you did do.”  So in this month of May, what are YOU going to DO to make a difference?