The Today Show to feature Dyspraxia

Thanks to the Dyspraxia USA Foundation, The Today Show plans to feature Dyspraxia in an upcoming show.  As such, the foundation is seeking letters from parents, teachers, medical professionals and individuals with dyspraxia to get a well rounding look at the condition and how in impacts their life.

Below is my contribution:

Dear Today Show,

Thank you for featuring Dyspraxia as a subject on your program.  It is a shame that the disorder is not better understood among the professionals that I'm leaning on for support.   My husband and I have two boys:  Bryce and Chase.   They are both delightful young men.  Our  4 year old is amazing, endearing, wiggly, impulsive, larger than life and globally dyspraxic.  For Chase, his fine and gross motor skills are impacted along with severe speech impairments.  When he was born, we thought he was the same brand of perfect that we experienced with his older brother.  But he was an unhappy baby; colic wouldn't not describe it.  After a few months went by he found his happiness, and he seemed just a normal as the next kid.  When his motor milestones started to occur in unusual patterns we thought he was wonderfully unique.  When the delays started piling up we knew we were working with a different type of perfection.  When he walks he appears to be drunk, or better, "made of silly string" which is how I refer to him.  He trips and falls often.  His ankles and wrists curl in and he walks with the high guard you would expect to see from a new walker.  He cannot master simple puzzles, nor does he know how much pressure to apply when using crayons.  He is frustrated.  He talks all the time, but is rarely understood.  His processing is so delayed that he will often respond to a conversation 10 minutes too late.  How can you possibly demonstrate what you know when it takes you so very long to process the request?  His vestibular system is so unreliable that he cannot swing on a swing, nor can he comfortably lay down in the dark--apparently that makes him feel like he is floating.  Indeed life for Chase is a very different experience than it is for most four year olds.  

Leaving the house is difficult.  I get my glasses pulled 9 times out 10 trying to get my now 40 lb child into his car seat.  He can't possibly walk through the garage without checking out the glass recycling or the wheels on the bicycles.  He can't seem to "hear" me when I request that he get in the car for the 15th time.  Finally I pick him up, suffer the hair pulling and we are off.  Chase most often requires to be on a harness (we use the monkey leash) to walk in public.  Which understandably garners some inquisitive looks from strangers.  Sitting still is not an option and his patience is up to about 12 seconds.  Going anywhere with Chase is work.  Fortunately I have an excellent co-parent to share the job with.  And even more fortunate, Chase makes the work worth it.  

I do worry about his brother, who although is only 6 must often serve as an extra parent.  Chase can't be trusted not to grab a hot stove, play in the toilet, or grab a steak knife.  Much of my issues are centered on safety.  His older brother must continuous deal with a sibling that destroys his train tracks and makes a mess of his room.  We often have to leave event early because Chase can no longer handle it (or we can no longer handle him).  Poor Bryce is constantly reminded not to leave the drink out, because his brother will spill it.  Indeed Chase's messes most often lead us back to Bryce.  Chase writes on the wall and we immediately ask, "Bryce did you leave the pen out?"  Bryce gets the short end of the stick too frequently.  He is an awesome big brother and Chase loves him, as do we.  I hope he knows just how loved he is; how thankful we are for him. 

As a parent, mostly I feel like I'm surviving, but I am frazzled and exhausted.  A few days ago something was amiss with my cell phone and I had to go to the cell phone provider's store.  Seems simple enough, but I had left the monkey leash in my husband's car.  I had to call my mom for a pep talk before taking Chase on my errand.  How was I going to manage this?  She offered to come watch him so I could go alone.  I found myself feeling angry and refused the help. "What I want is to be able to take my four-year-old into a store without having a nervous breakdown!"  I was yelling at the one person offering help.   As it turns out he did lay on the floor and complete log rolls throughout the store.  He was loud and chaotic.  Any other mom might have been mortified by his behavior, but by comparison, we survived and I was thrilled.  I had to thank him, because for Chase he was trying.

When dealing with doctors I have had many positive experiences as well as several not so positive ones.  I recently had to defend to a child psychologist at the local children's hospital how his dyspraxia was impacting him.   She seemed to believe that dyspraxia should only account for the clumsiness and discounted the rest or guessed that he is really autistic, which to those experts who really know him, agree he is not.  We have spent thousands of dollars out of pocket to medically investigate our son.  We are self-employed and although we have health insurance much of the recommended services to him are not covered at all.  We have had to cherry pick which services we can afford, and truthfully none of them are affordable for us.   We have to wait at least 6 months for any follow-up appointment and just when you think someone will give you and answer, they suggest only further testing and more money to be spent.  We have completely reinvented our diet, throwing our food dye, preservatives, most processed goods and meat, we have added in vitamin supplements and secretly give our boy fish oil milk shakes in the morning and tea with melatonin at night.   Its true we are grabbing at straws.  But as a parent you do that.  If it helps even just a tiny bit then you keep doing it.

We are very fortunate to have excellent early intervention services available through the school district.  Chase is in his second year with an amazing and tireless team at his school.  I feel like they are really rooting for his success.  All kids should have teachers of this high caliber.  We are also lucky to have supportive parents and extended families.  I see many others who think their child is just plain naughty.  I also started a parent support group, and here I find my sanity.  For those parents going through raising a special needs child alone: don't.  You must have help.  You must have a kinship with those parents who share your same frustration and joys.  The joys are many, and certainly outweigh the hurdles.  

I feel like having a dyspraxic child has slowed down the process of growing up.  Parents often say that kids grow up too fast.  This is true.  But having a child with dyspraxia is sort of like watching your child grow in slow motion.  For many months last year Chase worked on taking off his backpack at school and hanging it on a hook.  It is such a mundane task that few parents would ever celebrate.   Not true for us.  We heard from his teacher that he had been working on it.  Every day the same, they practiced dragging the backpack down in front of the hook until the loop on the top was snagged.  After the school year was nearly over, his teacher invited my husband and I in to see his success.  And he did it!  His whole face lit up as he knew what a big deal this was!  He was so pleased with himself!  Still as I think back, I get tears in my eyes.  He makes me proud.  He works so hard.  Can you imagine having to WORK at every little task.  How exhausting, how frustrating.  And yet, he continues to work.  I'm thrilled to celebrate hanging a backpack on a hook.  

6 months have passed since that milestone.  Recently on our way to school one morning I was asking Chase what he might do at school that day.  "Will you sing songs?... Will you paint a picture?"  He responded with some single words that I was actually able to understand and then he spontaneously offered up "bag on hook."  "You hang your bag on the hook?  Is that hard?" I asked him.  "Very hard!"  He replied.  "It is very hard."  I agreed.  "Really hard." He further explained.  And that might have been one of the longest back and forth conversations we ever had.  

I look forward to Chase's communication expanding so he can better explain what it is like to live in his body.  For now I'm doing my best guessing, but I'm sure when he is much older he'll tell me all the times I guessed incorrect.   He's a good boy and we wouldn't change him.  I do hope I find more patience myself, but other than that I really would not change this lot in life.  We have high hopes for Chase.  He is dealing with more than most, but I honestly don't find him to be cognitively deficient.   And when he proves to some of those recent doctors just how capable he is, I'm going to be the first in line behind him to say I knew you were perfect all along.  

Thanks again for your feature.  If more doctors, teachers, parents and people with dyspraxia gain awareness your time will have been very well invested.

My sincere regards,

Beth Pledger

Mom of Bryce and Chase.