Dear Parent of Apraxic Child

Since I began this blog I have had the privilege of receiving emails from parents with kids similar to my Sam. It is always so rewarding, fulfilling even, to find other parents with the same challenges and fears as mine.

my challenge, when contacted by other parents is to NOT be the fast-forward, tell-it-like-it-is, balls-to-the-walls, bossy-mother-type i tend to be. not every parent is where i am. not everyone has come to a place of acceptance with their child's diagnosis.

i have the very best of intentions when i respond to these parents, but i have always been a shoot-from-the-hip kinda gal. and not everyone wears Kevlar vests...

so i thought i would write one generic letter - to any and all parents with an apraxic child that might find their way to my blog - and if they can handle what i have to say here - out in the open - then i would love to hear from them via email (on my profile.)

so hear goes....

Dear Mom or Dad,

It really sucks to be you. There, we said it. If you think parenting a typical child is hard, you might want to sit down for the rest of this...

First, make sure your child's diagnosis of apraxia is accurate. The definitive diagnositic test for apraxia of speech is the Kaufman Praxis. Have it administered by an SLP that has done so at least ten times. (I had to INSIST Sam's public school purchase this test and administer it. The SLP was new and had never given the test. Sam has been retested several times since and I am confident of her diagnosis.)

Second, if your child has apraxia of speech, forget public school as you currently percieve it. I had the same thought you do - "If I can just get her ready for first grade."
Let that thought go right now. go ahead. exhale. I'll wait.

Sam attended a public preschool program for children with disabilities from 3 years old to 4 and a half years old. The teacher was exceptional. The speech therapist - young and new - but quite capable. In spite of competent, diligent teachers and an enthusiastic SLP, i consider this a year and a half lost for Sam.

You have NO TIME TO LOSE. if you get nothing else from this letter - realize that every day you spend with your child NOT in a program/therapy or the right program/therapy is a day gone forever. That is one more day he or she is behind his or her peers.

The hard truth - Public schools programs are not equipped to adequately help your child. Your child REQUIRES a communication emmersed education. Every single thing they do every single day must be centered around communication. This means being with a Speech Language Pathologist every day, all day. Yes, it's that serious.

Private speech therapy two and three times a week is nice. and you should do that, but it is the tip of a mammoth iceberg. And not just any speech therapist will do. Find one experienced with apraxic children.

How do you know if they have this experience? ASK THEM! and then ask them "How many apraxic kids they have worked with?" How successful were they with these kids? If the SLP tells you the kids were speaking clearly in a few weeks, months or even years - turn on your heels and leave them in the dust.

Third, be prepared to spend your life savings to help your child. No, I am not fond of this point, but you might as well know up front that it is NOT going to be cheap to help your kid.

To pay for what our daughter needs, my hubby and I drive older vehicles. All were bought used (except for the jeep which we bought before Sam was born.) I shop at Thrift stores for our clothes. I never grocery shop without coupons and use a coupon mom website to make sure i am getting the best value for my money. we do not go on vacations. my hubby keeps the thermostat at unreasonable temperatures through out the year to cut on our cooling and heating bills. (this makes me crazy) We forgo all the latest techno toys and gadgets. Our one TV is 13 years old. And we will not have a new one until this one DIES. We don't have cable or dish - only the local networks at our house.

THIS IS WHAT IT TAKES. Unless you are independently wealthy - prepare to sacrafice.

Fourth, when you make all these sacrafices and get your kid in a great program - your well meaning friends and family will tell you what good parents you are. how you are doing the right thing for your kid. don't believe them for a second. You cannot afford to become complacent and rest on your laurels. You should be questioning every single day if you are doing everything you can to help your child.

It's like worrying. Worry in and of itself gets you nowhere. It is completely unproductive. But if you worry and fret and gnash your teeth - you feel like you ARE doing something. it feels productive. but it's not.

Education and therapy for our children is VERY similar to this. We can do and go and do for them but if it is not with the right people at the right place at the right time - it is unproductive. but we feel like we are doing something.

Fifth, mourn. and don't be ashamed of this emotion when it washes over you. During your pregnancy, you hoped and prayed for a healthy child. Most mothers flat out expect a healthy typical child. I had pictured Sam in my day dreams since I was in my late teens. I knew her before she was ever formed and born. and in none of my dreams was she ever anything less than perfect.

So when you find you don't have a healthy, happy, typical child, there is a sense of loss. validate that loss. throw yourself one good, big pity-party, if need be. but don't wallow in it it, pick yourself up and and move forward.

People say to me all the time - "I don't know how you do it."
My constant refrain - "I don't do it well."
But the truth is - YOU DO IT. You will do whatever it takes to help your child live a normal, fulfilling, productive life.

Sixth, please don't tell me you don't live near an appropriate program. You are talking to a Mom that moved two states away from her husband with two young children WHILST pregnant with the third, moved in with her parents so her four year old apraxic daughter could attend a four day a week specialized program where the (walk-on-water phenominal) teacher was also an SLP.

And when I found out a new pilot program was starting in Dallas and that the class for my daughter's age group was already full - I BEGGED for them to make a spot for her. I begged.
and they did.

I am currently selling my family's 'dream country home' to move into a smaller "city home" in order to be closer to Sam's school.

Simply put - you do what you have to do.

Seventh, be prepared for more than apraxia of speech. There are often co-morbidities (the medical term for 'other bad stuff') with apraxic conditions. For example, Sam deals with ADHD, Dyslexia and BiPolar disorder in addition to her apraxia. Maybe your child will be fortunate and this will be the only diagnosis you have to deal with. But don't count on it.

Eight, prepare for battle. Uphill, in a hailstorm, unarmed and out-manned.
it won't get easier for a long time. you are in this for the long haul. but you must be prepared to lead the charge for your child and your family. not only must you be the very best advocate you possibly can for her(him) - you are required to back up what you say and what you plan with WHAT YOU DO.

Finally, You are not alone.
This does not have to be a solitary journey. Lean on friends and family. Reach out to other parents (like me) that have kids in similar situations. Keep your house in order - which thankfully is not the same thing as cleaning your house.
I mean nurture yourself. Pray, if you are a Believer. Or meditate. Find a way to feed your soul. Take care of your marriage. Eat right. Get enough sleep. Read for fun. Focus on the positive. Your role as a parent has never been more important than it is right now for your apraxic child. You have got to be on your game.

Apraxia is not 'cured' in a year or two or ten. Accept that. And get moving.

Time is your enemy. It robs our kids of progress. Every day they are further behind their peers. Every day is a struggle to catch up.

Our children do not get a single minute back. Speech will NOT just happen for these kids. They won't "talk when they are ready."
Your child has a neurological disorder.
Not a speech impediment.

Accept it.
Accept them.
And then get a move on.
There is work to be done.

With love and respect,
t_cole