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.

The Baby Pool Slide.

This summer for Chase has been a good one.  In fact we are already done with a full week of school, which in most ways has also be positive.  However, before the summer is a distant memory, before I can no longer recall the details, I need to reflect on a small, but wonderful success story.  

There are two pool options for our family living in Shawnee, KS:  Splash Cove and what we call "The Shark Pool."  The latter pool is more or less the "big kid pool," complete with a lazy river, 2 big slides and much more deep water for cannon-ball jumping.  Splash Cove, however is the pool we normally go to and because it is populated with mostly little kids it is easier to manage for me alone with two kids.  Chase (who is closing in on 4, but still definitely 3) can keep his head above water and his feet on the ground at nearly all areas of the pool.  And for a kid with an out-of-whack vestibular system having your feet on the ground is a big plus.  Of course my nearly 6 year old, Bryce, would so much rather go to the Shark Pool, which is only possible when I have a parent for each kid.  

Late into the summer we were off the Shark Pool--Cheers from my kid with a solid vestibular system.  At first I tried to take Chase in an area that is marked 3 feet depth; however, Chase can't stand there.  I am standing there getting clawed to death as Chase is dealing with the fact that I'm holding him and he might float away at any moment (or however it might feel to him).  You see, I can hold Chase without issue on firm ground, but in the water I think the movement of the light on the water messes with his system.  We experienced similar oddities during a trip to the aquarium once; where the light patterns on the ceiling where making it impossible for him to walk without falling over.  So I huff off to the small area designated for babies at the Shark Pool.  I was irritated because it was hot and I wanted to swim too.  I wanted to go down the slides and bob around the lazy river, but no, as the mom I'm off to the dare I say Stupid baby pool?  

Quickly I had a pep talk with myself.  It's not about me.  This is not my childhood.  This is good, cheap OT for Chase, this is a chance for Bryce and his father to be obnoxious in the pool (I'm rarely that fun).  So I sat down in the zero entry baby pool and watched my sweet Chase have the time of his life.  We have been to the Shark pool a handful of times over the summer and never once did Chase attempt to climb up onto the playground equipment in the center of the baby pool.  But here during my crankiness I noticed him, right up there!  Wow, did he just go up those stairs no problems?  On a prior trip I carried him up there and attempted to shove him down the short tunnel slide, but he protested and I didn't push it.  But on this day he was up and down many times.  I was so proud.  He was motor planning just like any kid would do.  All these other moms taking for granted that of course kids climb up stairs on playground.  You must also factor in all the chaos that a pool creates and the constant sprays of water from all angles of the pool slides and equipment.  While it is intended for little kids, it is also intended for kids with a smooth sensory system.  

Eventually I see that Chase is looking into tunnel slide.  A kid would approach and he would retreat.  100 more kids come up, every time the scene is repeated and Chase never goes down the slide.  By now I'm sitting on a patio chair and clutching my hands at my face.  I must look like one of the fans the camera crew finds in the bottom of the 9th inning when the home team is down just a run.  I'm holding my breath, silently begging this kid to go down the slide.  20 minutes goes by and Chase is still flirting with the idea of going down the slide.  He is in, then out, he's in and then pops back out and then... HE DID IT!  I was so excited I ran to the bottom to high-five him or hug him or celebrate at least a little, and he didn't even so much as acknowledge me or his accomplishment.  (which is highly unlikely, this kid claps and screams yea for putting a cup in the sink.) And with that he slide down, with no future hesitation, 62,000 more times.

I was so over joyed, I had a lump in my throat.  Really it was up there with watching the kid hit a home-run.  Which I hope to write about one day too.   Never have I been so happy to sit at the stupid baby pool.  I'm also proud to report that the next time we went to the Shark pool I gladly took Chase to the baby area and enjoyed watching him without any pretense of crankiness.

And as for our start the school year, we are beyond happy with the school and his team of teachers.  The only slight drawback is that my sweet boy is a hair puller.  We are working on it.  We've been working on it and as soon as I know how to solve that, I'll write about that too.

Dr. Suess's IEP

I came across this poem and thought it was worth a share.  I should also give the disclaimer that while I know (and actually fully expect to one date hate the IEP meeting) to date our experience at the IEP conference table has been pretty enjoyable.  Especially on those times when I remembered my cup of coffee.

Dr. Seuss's IEP

Author Unknown

(To The Rythm Of "Green Eggs & Ham")

Do you like these IEPs?

I do not like these IEPs

I do not like them, Geez Louise

We test, we check

We plan, we meet

But nothing ever seems complete

Would you, could you like the form?

I do not like the form I see

Not page 1, not 2, not 3

Another change

A brand new box

I think we all

Have lost our rocks

Could you all meet here or there?

We could not all meet here or there

We cannot all fit anywhere!

Not in a room

Not in the hall

There seems to be no space at all

Would you, could you meet again?

I cannot meet again next week

No lunch, no prep

Please hear me speak

No not at dusk. No not at dawn

At 4 p.m. I should be gone

Could you hear while all speak out?

Would you write the words they spout?

I could not hear, I would not write

This does not need to be a fight

Sign here, date there

Mark this, check that

Beware the student's ad-vo-cat(e)

You do not like them

So you say

Try again, try again!

And you may

If you will let me be

I will try again

You'll see

Say!

I almost like these IEPs!

I think I'll write six thousand three

And I will practice day and night

Until they say

"You've got it right!"

What is Dyspraxia?

What is Dyspraxia?

You don't know what dyspraxia is?  Don't worry most doctors and teachers have not heard of it either.  Here is the shortest definition I can create:  It is a lifelong, neurological based condition that impairs the brains ability to plan motor movements.  It has previously been called "Developmental Coordination Disorder" but apparently that did not sound very kind, even if it does sound accurate.  

Questions people sometimes ask me as the mom of a dyspraxic kid.  (Or sometimes I just get the feeling they would they could ask me.)

Is it curable?  No.

 

Is it dismal? I don't think so , it just is.

How does that impact his life?  Do you have a week?  Come live with us and watch him walk through the world.  Every day unfolds new challenges.  Eating with a fork is nearly impossible.  He can't participate in getting dressed.  He has an impossible time making his mouth talk.  He says lots of things, but we have a hard time understanding him.  He falls down, often.  He is frustrated.  

Will it get better?  I believe he will learn to cope.  And we have very high expectations for this little rat (I say with love) but he will always have dyspraxia.  Dyspraxia is lucky to have such a great guy as a life long member of its club I say.

And because I'm not a doctor or other professional of the industry, can I please refer you to these smart people for a better more complete definition:
http://www.dyspraxiausa.org/ 

Parenting is Easy.

Parenting is easy.  (Sometimes)

In 2007 I had the very good fortune to become a mom to my sweet boy Bryce.  I share my parenting efforts with awesome partner in crime, my husband Carl.  "Parenting is easy." I more or less thought.  Sure we had some first time parenting issues, for example I was really overwhelmed at picking a brand of baby bottles.  In the end I picked a brand that was found to be choked full of BPA.  All of my best intentions and I had probably poisoned my new and perfect boy.  And too there were are mishaps in finding a decent solution for his day care.  It might be true that I only went to one daycare before enrolling our son in a place that I felt in my gut was not good enough.  It lived up to my fears.  But in general, parenting was easy.  It must be because we are such great parents.  Clearly if you are just good at something, well then, it comes easily.

In 2009 we became doubly fortunate to add another boy to our family:  Chase.  We welcomed Chase home to his big brother, exactly two years older and in no way ready to share his life with this thing that cried.  ALL.THE.TIME.  "Put him away."  Bryce insisted.  But alas there was no padded, sound proof room for us to stick Chase in, and so we all just listened to him.  

At his well visits as a newborn the doctors asked, "How often does he cry?" 

"All the time." I replied.

"Well how many hours would you say?"

"Six, I suppose."

"How many hours is he awake?" The doctor looked perplexed.

"Six."

"So he cries all the time?"  The doctor starting to come around to the reality we are working with here.

"Yes, all the time." I repeated.

Fast forward 3 and half years and we find ourselves with a small collection of labels that have been stamped on his files that live in offices of a variety of different doctors and specialists.

Among which are:  Sensory Processing Disorder, Dyspraxia and a chromosomal duplication.  It might be that he gets a few more labels along the way, or perhaps three hurdles are enough jumping for one little boy.  Either way, I welcome you to our lives with Chase and his big brother, Bryce.  Both delightful.

I have to tell you that I have never heard of one of these issues until I had Chase.  I'm learning as a go.  I become smarter and more confuses simultaneously.     I find myself reading everything I can get my hands on.  The library is going to give me my own memorial park bench from my late fees.  (I believe it was my husband how kindly pointed out, "It takes a real loser to be sent to collections from the library.")  The internet has yielded me dozens of online forums and fake friends.  (I say with love.)  The nicest guy drives around our neighborhood in a big brown truck and throws books on my doorstep, those have been really helpful.  I find that I have to keep reading, because no one ever wrote a book about Chase.  He is one of kind.  And so, I guess that job will fall to me.  Maybe I'll write the book about Chase.  Maybe.  But maybe he'll write his own book.  I'm sure he has stories to tell.  You know after he learns to talk :)

And so, while Chase might be one of a kind some our daily struggles are not.  Our chaos is not that unique.  Sometimes it is pretty darn entertaining and perhaps you would care to buckle down with us on our roller-coaster.  Maybe you are one your own roller-coaster.  Either way, I'm pleased to share our chaos.  I'm pleased to proclaim that I have two perfect boys, wildly different from one another and I'm humbled to admit that parenting is not easy.  It takes patience and tears.  It takes glitter all over the kitchen (I guess, because that keeps happening), it takes trips to the doctors who sometimes look at you like you are crazy yourself.  It take IEP meetings, it takes awkward exchanges with other moms, "I'm sorry my son bit yours, he is going through a bit of a phase." It takes a monkey leash.  It takes help.  It takes a beer at night.  It takes screaming in your car with the windows up.  And it helps if it comes with hugs, good friends and supportive co-parents.  I'm lucky to have all of that.  I'm lucky to have my boys.