Sunday, March 21, 2010

The Harm of Low Expectations - aka "The File"

Kelsey went to a doctor recently. One who last time we saw them said essentially (not in overt words) "See you in 8 mo. I have no hope for your daughter's improvement in this particular area."

Kelsey and I are well-versed in ignoring poor "professional" opinions.

In this instance, I was fortunate enough to have one of Kelsey's therapists accompany us to the appointment. (She was kind enough to offer after I indicated how I felt about what happened last time.)

As it turns out, she was needed. The doctor did not believe what I had to say until it was confirmed by the therapist.

I understand the "professional skepticism" idea; however, I feel that I have educated myself and do not come across as a naive parent just believing what she wants to believe about my daughter.

I know from my own research the odds, percentages, etc of all kinds of things that three years ago I wasn't aware existed. I am fortunate that I have the intelligence that I do and have been able to find the answers, the research, treatments, and equipment that Kelsey has thus far needed.

But what of those parents that sit in a "care conference" with their newborn in the NICU across the hall and believe 100% what the doctors say when they say their baby will essentially be a vegetable? That she has a good brain stem and "will live for awhile"?

What of the parents that accept what a therapist has to say as 100% fact? The parents that believe that their child is not capable or smart because they are nonverbal? The parents that give up hope so as to not be accused of being in denial?

If I would have listened and believed everything I heard, Kelsey would not be who she is today.

Do you know how we know Kelsey can do the things she can?

Because I tried. I offered her the opportunity. I pushed for the opportunity. I researched what might work.

As a parent with a child with "special needs", you can not wait for the doctors or therapists to suggest to you what your child needs or is capable of.

You must determine that for yourself.

I am the one who got the Fisher Price piggy bank and tried to get her to take the coins from me. I am the one who got the knob puzzle, showed it to her and let her try to do it. I am the one that tries to give her a verbal "play by play" of what I am doing so she doesn't miss out...

I wanted to get a communication device to try with her b/c she knew left/right and was using it to make choices. We got "yes" "no" cards and guess what? She answered questions.

Then they brought a three button device (of which we use two) which we programmed to say "yes" and "no" and she accurately answers all kinds of age appropriate knowledge questions --even things I didn't teach her on purpose and gets a "kick" out of having a voice. (She also thinks it's funny to say "no" 99% of the time when asked if Mama is a good girl.)

Finally I sought out a "Go Talk 4" with 4 choices b/c I thought she could do it. and guess what? She can. (can't always get the button to activate the voice, but gets her hand there.) and I am confident she could do more choices at a time if not for her motor skills.

I am so tired of constantly having to prove to everyone that Kelsey is cognitively capable. It seems no one wants to give her the benefit of the doubt and wants to put her in a box until she proves otherwise.

But more than that, it makes me sad because I know that there are other Kelsey's out there whose parents did believe all the bad news....and because they believed, they never tried.

There are Kelsey's out there trapped in themselves, never getting the opportunity to live to their potential.

Kids can't do anything if not given the opportunity. Will there be things that Kelsey won't do? Sure. (just like with any kid (maybe just different things))

But do I know that she 100% won't do the things that I never let her try?


Does she sometimes surprise me?

Absolutely. (like when she chooses to play with the baby doll when I am sure she wants to put on her beads or when she says "i" on cue to my "hello" or "un" on cue in the Mr. Sun song as if she always can get her words out that easily.)

I knew holding newborn Kelsey in my arms in her room that she was in there. I remember sitting in my grandma's wooden rocking chair, holding her in my arms crying, and telling her I loved her and knew she was there. That we would make it through this. That she fought to get here and I would fight for her now that she was here.

Maybe that has been part of the difference. When we lost Kaitlyn (Kelsey's identical twin), all I could think of was getting Kelsey here "safe". If she just made it to birth, everything would be ok. That she wanted so badly to be here and was meant to be here.

When she did make it, I knew she was a fighter. I knew she had a future.

These are all things I still know and now she can start telling us.

She can start telling her own story.

I hope that some new parent reads this and it provides encouragement. I hope it provides "permission" to believe.

After all, what do you have to lose?

I will leave you with something I wrote last year in response to a similar situation with a professional.


I must steal "the File".

It is the enemy.

It is what professional review before meeting Kelsey which explains why they expect a certain level of ability. It is the paperwork which gives people misconceptions about Kelsey before she is ever carried through their door.

Yes Kelsey has microcephaly, porencephaly, optic nerve hypoplasia, possible cortical visual impairment, and dystonic quadriplegia cerebral palsy, but she is also a bright and beautiful toddler with unlimited mental potential.

Kelsey is not as scary as her file looks.

Kelsey really does not present (as the medical people would say) as you would expect someone with all her labels to.

She is much better.

Does she have a brain injury?


Has she worked a way around it, improving every day?



Erin said...

i really like this post. i've been a lazy blogger lately, lots of linking, so, to that end, mind if i link this post? ;)

Grandpa Chuck and Grammy said...

We are so proud that you are our daughter and that God chose you to be Kelsey's Mommy. . .We love you
so much and know you will continue to work hard for our Kelsey Girl!
Hugs, Dad and Mom

Pipsylou said...

You two are unstoppable.

Kimberly said...

That is possibly that best post you have ever written! I would love to print it out and share it with other therapists and parents...what do you think! You Rock!!! Keep up your hard work and prove (them) us all wrong!!!
Miss Kim

Anonymous said...

It is so disappointed that medical (all professionals) get caught up in their educations. It is easy to do as that is what we know best. Takes special people like Kelsey to proove that books don't know everything. It also takes parents that are strong enough to stand their ground. Continue to hold strong and say your peace for our precious girl. Give hugs and kisses to our niece from your Southeast family.

We love you,
Uncle Chuck and Aunt Dana

Katy said...

This is fantastic. I feel the exact same way and I feel so bad for the parents who believe all the thing they are told on day one.

Ellen said...

FABULOUS post. We were definitely told the worst when Max was born, and it took a long time for my soul to gear up again. Max has defied those doomsaying doctors!

Andrew Trapp said...

You are an amazing mother. You have so much love and strength. You and your daughter are proving the world wrong and it is an inspiration cousin.