How our journey began...

Not too long after the start of Aidan's kindergarten year, Ms. Mabry, a wonderful kindergarten teacher with lots of experience, called me in for a parent conference and very gently told me that she was concerned about his motor skills.  His coloring and cutting skills were not improving and, while other children were learning how to write letters correctly, his writing was illegible and his drawings were immature.  He was clumsy, fell a lot for no apparent reason, and would sometimes just fall out of his chair (he wasn't being silly).  As a Speech Language Pathologist, I was determined that  my children would have age appropriate verbal skills and a good grasp of early concepts, and I thought I had prepared him for school.  How had I missed the fact that his motor skills weren't developing as they should?  Looking back, I can see the signs from infancy and toddlerhood...delays in sitting up on his own, not crawling, not walking until 16 months, trouble learning how to pedal a tricycle, constantly bumping into things, and sensory and sleep issues, just to name a few.

My husband and I decided to start with an Occupational Therapy evaluation and the OT agreed that his fine and gross motor skills were delayed.  She mentioned dyspraxia and suggested that we see a neurologist to rule out any other neurological issues.  I will NEVER forget the day that the neurologist told us that Aidan had dyspraxia. Even though the OT had already said it, and even though I had a file full of information on dyspraxia in my bag, there was still that moment where I felt my heart breaking and I cried when we got to the car.  I know it could have been something much worse, but it was something my beautiful, smart boy would always have to overcome.

That was 9 years ago...what a journey it has been!  I know that getting help for him early has made such a difference.  Teachers, please talk to parents if you have concerns.  Some may take it better than others, but it is so important to let them know.  Parents, listen to the teacher if they share concerns about your child.  Don't let pride or fear keep you from acknowledging that your child might have a problem and getting the help he or she needs to be successful.

I keep thinking back to something the neurologist said that day.  He said, "He will never have neat handwriting and he will never be a ballerina."  At the time, I thought it was a very strange thing to say, but I am pretty sure he was telling us that Aidan would struggle with some things, but he was going to be okay.  You know what?  He was right.



For more information on dyspraxia and the early signs, visit http://www.dyspraxiausa.org/symptoms/early-symptoms/

I really wanted to post again prior to school starting.  I had these grand plans to talk about how we deal with the anxieties of a new school year, but that obviously didn't happen.  The response to my first post has been overwhelming and I have had several people contact me to ask me about how our son was diagnosed with dyspraxia...I seriously got chills when I read the first message.  I plan to talk about that in the very near future (promise!) and will be glad to answer any and all questions about where to seek help, but for today, I have to write what's in my heart. 

To be perfectly honest, it's not been a very good day.  It started out well enough.  We managed to get out of the house and to the high school and middle school on time which is a HUGE accomplishment.  I will save stories of our morning struggles for another post, but suffice it to say, "It ain't pretty!".  Anyway, this is the first year Aidan has been excited about starting school.  I am pretty sure it was for purely social reasons but, hey, I'll take it.  We visited the high school last week for open house and we walked to all of his classes (several times).  It was a very exciting time!  We spent hours last night organizing school supplies.  I took the obligatory picture at 6:20 a.m. and he was even smiling a little.  I was optimistic!  So, when he got in the car this afternoon, I wasn't prepared for, "I hate high school!".  My heart sank and the anxiety I had tried to suppress all day was almost a full-blown panic attack.  Remember when I said that it's tough...that was an understatement.  We tried to plan for every situation and every difficulty, but I have to think I wasn't as proactive as I should have been.  It's easy to forget how dyspraxia can impact every aspect of life (especially with regards to school), so I wanted to share this diagram. 


  

I know this wasn't the most uplifting thing you've read today, but I promised myself that if I took the time to write it all down, I would be honest and real.  I wish I could say that I reacted in a positive way.  I wish I could say that I didn't get frustrated when he told me he didn't write anything down or that he has no idea what the teacher said because the "words got all muddled up", but I can't.  In the words of one of my favorite characters, Anne Shirley..."Isn't it nice to think that tomorrow is a new day with no mistakes in it yet?". 

The beginning...

The idea of starting a blog to discuss my oldest son’s dyspraxia has been brewing in my mind for quite a while, but I would always talk myself out of it.  Will people really want to read what I have to say?  Will they think that I am merely looking for attention?  As I dropped him off for high school orientation today, I decided that the answers to those questions really don’t matter.  He is, in my mind, a success story and if I can help one child, one family, by calling attention to an often overlooked and misdiagnosed disorder, then putting my words down on a page will be worth it!   I asked my son how he felt about me blogging and sharing his story and there was absolutely no hesitation when he gave his blessing.

 If you decide to join me on this journey, WELCOME!   He received the diagnosis in kindergarten so, obviously, I can’t tell the entire story in one blog.  I guess the best place to start is to define dyspraxia. Chances are, you have never heard the term, but I can almost guarantee that you have seen or know someone who fits the description.  Dyspraxia is a neurologically based disorder and affects a person’s ability to plan and carry out motor tasks.  It’s been called “Developmental Coordination Disorder” or “Clumsy Child Syndrome” over the years.  Much of the research has come out of the U.K. and one of the best books I’ve read on the subject calls it “the hidden handicap”.  It affects approximately 1 in 10 and is much more common in boys.  It can make even the simplest of tasks extremely difficult and is worse on some days than others.  It often occurs with other disorders like ADHD and Sensory Processing Disorder, which further complicates things. 

Some people think (trust me, I know this because I’ve been told as much) such things should be private and not discussed, but when has that ever helped anyone?  I will never regret the decision my husband and I made to be open and honest with our son about his difficulties from the very beginning.  I won’t lie, it’s tough.  He is such a smart kid and it’s hard to watch him struggle with tasks that most of us complete with little effort.  One of his teachers told me that she cannot imagine how intelligent he really is to overcome what he does on a daily basis and still make such good grades.  I certainly don’t have all the answers and I can’t take credit for his success.  Much of that is thanks to wonderful therapists and teachers.  The one thing I wish to offer as I share his story…hope.