apraxia awareness day, 2014.

today is apraxia awareness day.

anyone who reads my blog knows my max was diagnosed with apraxia about a year ago.  it will be a year in august, i think.  i know his hearing was checked on my birthday.  in august.  and we got the diagnosis right after that.

first, let me say that this is NOT where you need to come to figure out if your child has childhood apraxia of speech.  i'm not a speech therapist.  i'm just a mom.  of a child.  have i read everything there is to know?  probably close, yes.  but still.  i'm just going to give you our story.  max's story.  if it helps one child, one momma, one friend out there, then i've done my job.

max was born at 38 weeks.  he weighed 7 pounds, 5 ounces.  he was 21 inches long.  easy delivery.  no problems.  we spent one night in the hospital.  came home the next day.

day 19.  max started screaming.  like his face off.  like i was dying.  i wanted to give him up for adoption.  after multiple medications for reflux (which i don't believe in) and multiple milk/formula changes, we were stuck with the old "colic" diagnosis.

and let me tell you something.

that's what it was.  colic.  good ole colic.

it lasted for 121 days.  one day he woke up and didn't scream his face off from 8 am until 8 pm.  one day it just stopped.

and on that day all the angels sang a loud hallelujah.  and hannah and clint started loving each other again.  but never wanted to have sex for fear that they would produce another child with colic.  #truestory

anywho.

max turned into the best child ever.  happy.  so darn happy.  and i deserved every single smile.  because i almost killed him.  myself.  everyone around me.

i don't remember exactly when, but i noticed he was slower at milestones than pratt.  but i was told by our pediatrician that kids develop differently. so whatever.  but i felt something was off.  i knew in my heart there was more to it.

max choked on food.  A LOT.  his tonsils were a 4+.  meaning they touched.  so we had them removed.  but back up.  prior to that, he had 8 ear infections in his first year of life.  which prompted set #1 of tubes.  we've now had 2 sets.  with a total of 14 ear infections (he is 3 years old and 1 day).  that's a heck of a lot of ear infections.

he had strep 6 times.  so that explains the tonsillectomy.

we learned later that he chews his food differently.  he stuffs his cheeks like a chipmunk.  he would pocket food.  and then slowly attempt to chew it and swallow it.  this is why he choked a lot.  (plus the gigantic tonsils DIDN'T help).  he would often chew and chew.  then when we would offer him a drink, he would pull all the food out to take a drink.  people would comment on how gross this was.  i always wanted to punch them in the face when they did this.  he wasn't doing it to be gross.  he was doing it because otherwise, he would have choked and not been able to breath.  he could not keep food in his mouth AND take a drink at the same time.  (this will make more sense later).

max didn't sit up or crawl or walk early.  or even really "on time".  we often called him "lazy".  he would let you hold him and he didn't hold himself up at all.

i can remember grocery shopping and having to really prop him up in the buggy.  because he would just slump over to one side.

he didn't babble as a baby.  i thought it was because of the all the ear infections.  kids babble because they hear things.  he wasn't hearing jack with all those infections (i thought).  so he wasn't babbling.

at 2, he had maybe 2 words he said.  momma (sort of) and at (pratt, cat, ???)  that was it.

he drooled.  a lot.  he rarely closed his mouth.  he would leave it open and drool would just escape from his little lips.

he couldn't blow bubbles.  he couldn't blow a whistle.  his lips didn't seem "to work".  he couldn't pucker up for a kiss.

he "w" sat.  this means he bent his legs backwards and sat that way.  i learned during pt that children sometimes sit that way because it keeps their abs from being engaged.  he DID NOT walk up or down stairs.  refused.  he couldn't walk down an incline.  he didn't walk down hills.  or uphill for that matter.  he never ran.  or skipped.  or jumped.

a lot of this was stuff i realized when we started physical therapy.  he was diagnosed as low muscle tone.

now.  my school psychologist background is killing me right now.  because i've labelled all the things that max "can't do".  or "does differently".

so let me tell you what else he did.

he tried.  every single damn day, he tried.  he would attempt to run.  he would attempt to go up the steps.  he would try.  he would catch himself drooling and catch it with his hand.  he would look at you with guilt.  like he knew he wasn't supposed to that.  like it wasn't normal.

and after a while, he seemed to give up.  he became more quiet than ever before.  he stopped chatting all together.  he was silent.  he pointed.  he would take your hand and lead you where he wanted to go. but he JUST DID NOT attempt to verbalize anything.

it was heartbreaking.

around this time, he was getting speech here in our town.  our speech path came to me and said she thought he had apraxia.

okay.  let me say something here.

about labeling.

max HAS apraxia. just like you might know someone who HAS dyslexia.  or someone who HAS autism.

they are NOT autistic.  autism DOES NOT DEFINE THEM.  so can we please change the way we  say that.  if nothing else, remember that.  these things don't define these children.  they are children FIRST.

(hopping off the soapbox).....

she tried to do "typical speech therapy" with him.  but he wasn't progressing.  and he should have been by this point.  we weren't even up to a 5 word vocabulary.  and he had been going to speech for several months.

so she was wonderful and basically spelled it out for me.

access school in little rock.  just go.  just take him and go.

so that's what we did.

we got a diagnosis.

childhood apraxia of speech.  oral and verbal.

meaning his mouth didn't work properly and that his speech was affected.

we applied for TEFRA (secondary insurance for disability).  we were accepted.

max started speech therapy at access.  he goes 4 times a week.  for an hour each day.  so he gets 4 hours a week of intense speech therapy.

yesterday, on his birthday he looked at me at hallmark and said, "i hold and smell".  he wanted to hold the candle and smell it.

you might think that's normal for a 3 year old.

it might be.

but listen.  it is EXCEPTIONAL for my max.

because he is a rockstar.

and he has worked his tailbone off.  and he WILL be talking in full sentences soon.  like full sentences than ANYONE can understand.  i'm sure of it.

his speech doesn't sound like the average 3 year old's speech.  it's rhyming often. he drops the first syllable a lot.  this is apraxia.  that's common.

i'll link here a great site for more info.

again, i'm just a mom.  and so my story might be different than yours.

but i'm a huge proponent of early intervention.

there was a time when clint and i would lie in bed and worry.  we went through every possible diagnosis.  i knew he wasn't showing signs for MR or autism.  but there were times when he had blank stares.  times when he looked right through me.  there were and still are times when i feel he ignores me.  like doesn't hear me talk.

i know now that is normal for him.  i know his hatred of the vacuum cleaner is normal.  and okay.  he covers his ears when he hears loud sounds for a reason.

knowledge is power.  i can help him because i know this stuff.

if you're worried about your baby, let me tell you something.

that's good.  because it means you love them.  and it means you're a good parent.  don't sit on it.  do something.  find someone to help.  find someone credible.  don't accept a label.  don't worry about being offensive.

you are his/her only voice.  so be a good one.

if i can help, let me know.

my email is hannahfielderfulks@yahoo.com

through all of this, i know one thing is for sure.

i get more satisfaction from knowing that i've helped someone than you could ever imagine.

i still have hard days.  hard nights.  when i put him to sleep, i keep waiting on the night when he will say, "i love you momma".  we are almost there.  "love you" is there.  i yearn for the day when he cups his hand over pratt's ear and whispers a secret.  i pray that soon he can call my mother and talk and talk without her wondering what he is saying.

i will throat punch the first kid who makes fun of him talking.  i will.  i really will.

my friend joanna has said that max will change the world.  that he will be very influential one day.  i believe it.  i'm claiming it.  i know that i'll look back and laugh that i ever worried about him.  that i ever worried about him talking to me.  or to pratt.  or to anyone else.

i am thankful God saw me fit to raise this child of His.  i am thankful He thinks i'm good enough to love him and show the world how special he is.

yesterday, on his birthday, my sister sent me this text.  it's beautifully written.  and captures hers and max's relationship to a t.  i have to share it.

"you have touched more lives in your 3 years than most do in a lifetime".  i mean, are you balling your eyes out?  the craziest part?! it's probably true.  xoxo sugar pie.  xoxo.

if nothing else, just know that if you're feeling it, i've probably felt it too.  one of us has.  and you're not alone in this.  there is help.  good help.  you just have to be big enough to ask.

thanks for reading.  max says thank you too.