Sunday, October 2, 2016

How Special Sounds

By Danielle Boyce

It's too early to say there's anything wrong with him.
It's just teething.
It's just a growth spurt.
It's probably nothing.
Try to catch it on video.
Sometimes moms get nervous.
Have you been checked for postpartum anxiety?
The price of that drug is so high that we don't offer it here for ethical reasons.
He won't need early intervention.
We didn't properly review the first MRI.
One hundred seizures per day is your new normal.  Unless he has more than that for ten days straight, I don't want to hear about it.
That kind of surgery is not for kids like him.
He is not sick enough for nursing services.
He is too sick for day care.
He doesn't qualify for speech therapy because he can't talk.
I call the spasm seizures "Superman seizures" because their arms go up.  It's a cuter way for my patients' parents to look at it.
I think a three-piece puzzle is an unrealistic goal.
I wish I was that flexible.
Did you know when you were pregnant that something was wrong with him?
I know exactly how you feel.  My dog had seizures.
Will he grow out of it?

Your claim has been rejected.

Your request has been denied.

He is no longer seeing new patients.
Fill out this form.
We need more documentation.
He has been dropped from...
We no longer cover...
If he is hungry enough, he will eat.
How long do you think he will live?
What are those toxic medications doing to his body?
I only feed my child organic.  I hate to even give my child Tylenol.
Did he even notice you were gone?
Why don’t you just leave him at home?
Are you going to put him in a home?
If you have insurance, why do you need a fundraiser?
Did you take any medications during your pregnancy?
Do you think your age when you had him had anything to do with it?
There is a six-year wait for that benefit in this state.
If you fail three medications, the odds of anything working are almost nil.
We don't think he really has autism, but it's the only way to get services.
Can he talk?

Can he walk?

Can he feed himself?

You don't qualify for the study.
We can't watch him by ourselves.
That drug isn't legal in this state.
Just Google a list of approved private schools and visit all of them.
We can always go back in again and take out more of his brain.
Why does he drool so much?

Is he retarded?

Would you like to participate in a study?
Have you gone to Dr. Rockstar?
We no longer accept your insurance.
Please send in diapers and wipes.
Technically, it's a wheelchair.
He looks so normal.
...but we don't have one at this school.
...but we don't have one in this county.
He's doing great...for him.
Are you going to wear purple today?
Are you going to the epilepsy walk?
Do you think it's helping?
Even if we do find a mutation, there's a good chance we won't know what it means.
...but they are not allowed to change diapers.
Most kids with infantile spasms don't do half as well.
You have to be at home to sign for it.
He's too old for...
He's too young for...
The attending will stop by and then we will try to discharge you sometime today or tomorrow.
Too bad you don't live there.
Have you ever read Flowers for Algernon?

Please help.  

Please hold.

You are in my prayers.
You are such a good mother.
He's adorable.
We love him here.
The noise doesn't bother us.
We have some extra clothes that might fit him.
We will keep inviting you.
Just tell us what to do.
I will help you to get into the free diaper program.
Would you like to come over for a play date?
There are plenty of things we haven't tried.
He is my favorite patient.
We are thrilled with his progress.
Isn't he just delightful?
He is so smart.
He is just frustrated because he has trouble communicating.
We would love for you to come tell his story.
You are right.
Don't apologize.
I would be upset, too.
Let me see if we can squeeze you in.
I am so lucky to be his teacher.
He used his words today.
You must be working so hard with him at home.
How are you today, Charlie?
We are learning so much from him.
How is your other child?  Can I help her in any way?
You inspired me to hold a fundraiser.
I am proud to be related to him.
I shared your blog post.
Look how far he's come!
Great job, Mom!
He is perfect just the way he is.
I've been a neurologist long enough to know that I don't know everything.
We will cross that bridge when we come to it.
You can do this.
There's no shame in asking for help.
Scientists are making breakthroughs every day.
Your quality of life matters, too.
Let me ask my colleague what she thinks.
I know another parent who would love to talk to you.
I am so impressed with how you have handled all of this.
I will never look at kids with disabilities the same way again.
Hold on just a little while longer.
I am so sorry you are going through this.
I will sit right here and answer all of your questions.
We know you love Starbucks so we got you a gift card.
We will watch him so you can get your hair done.
You can work from home.
You can join us by phone.
I've been reading up on epilepsy.
I will run to the drug store and pick up his prescriptions.
We will send dinner to the hospital.
You're doing everything right.
This isn't your fault.
You could not have prevented this.
Let me change his diaper.
Would you like to talk to the social worker?
That doesn't sound right. Let me try to fix it.
I will schedule that for you.

You qualify.

You are eligible.

Let me take them for a few hours so you can have time alone.
My mom asks about him all the time.
I'll come to you.
He did great today.
He is such a funny kid.
Both of your children always look so nice.
Your request has been approved.
Let's have a girls' night at your place!
The case worker can handle that for you.
I have seen much messier homes.
Thank you for your help.

You're the expert.

He's your child.

Danielle Boyce is an award-winning advocate, clinical researcher, public speaker, and writer.  Her work has been published in dozens of scientific journals.  Her special needs-themed children’s book, Charlie’s Teacher, is used in children’s hospitals throughout the country.  Danielle’s blog, follows her journey as a mother of  a son who had infantile spasms and two brain surgeries. She is the founder of Neurology Parent Professionals, a networking group for researchers, clinicians, and nonprofit executives who have children with neurological conditions.  Danielle holds a Masters in Public Health with a concentration in epidemiology.  She is the 2015 winner of the Child Neurology Foundation Hope award and the 2015 recipient of the Lundbeck Your Partner in Epilepsy award.  She has served on the Board of Directors of the Lennox-Gastaut Syndrome Foundation, is a caregiver liaison for CURE’s Core for Precision Medicine, and is a member of the Steering Committee for the Rare Epilepsy Network.  She serves on numerous caregiver advisory boards for prominent researchers and is an FDA patient representative for pediatric epilepsy.  Danielle is the Director of Translational Research at The Brain Recovery Project and has worked as a Senior Research Data Analyst for Johns Hopkins School of Medicine since 2007.  She lives in suburban Philadelphia with her two children, Ryan and Charlie.

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