What if the Hokey Pokey is NOT what’s its all about…

Walking….

Really is it that important???  Now I realize I am biased. I am quite accustomed to alternate transportation.  But really, do you have any idea how far people go to get their kids to walk?  I met a 3 yr old with CP (quad). He is cognitively fine, his fine motor and gross motor are a struggle (as expected). His current development goals..  It was alllllllllll about walking.  I watched his PT work with him. He struggled, was in some pain and even cried at several points. His Pt told me he had made very little progress in the last year. Its obvious medically this is a kid who will almost for sure will never walkwithout an assistive device and even then he will probaly quickly choose a wheelchair…why you ask???? Because he will want to keep up in middle school and high school, not get knocked down and not be utterly exhausted by third period. )

WHAT HAPPENED TO DRESSING HIMSELF???? USING A PENCIL???? FEEDING HIMSELF??? This kid has major fine motor issues and they are taking the backseat to walking which is most likley fultile for him anyways. There is occupational thearpy in his weekly scedule but it takes a back seat to PT and all things to do with walking.

And I see this all the time, everyone is so focused on meeting the magical gross motor milestone of walking that the parents, phyisican, teacher, thearpist, etc get tunnel vision and instead of thinking what does my child need in 20 years to be functional and independent? We get I want my child to WALK!!!! Beyond the inattention to fine motor or whatnot the other issue is what happens when the child doesn’t walk??? Well then he or she has failed and don’t think they won’t feel that way to at least some degree. The parents certainly feel that way.  If you spend 6-8 years of life trying to learn how to walk and then don’t…what does that do for a you as disabled kid who already is going to have to confront some huge pyshcosocial and idenity issues (with or without the magical mystical superpower of walking).

WALKING DOES NOT EQUAL WHOLENESS. What is this mystical quality that walking has??? Why in our society/culture/etc are we obessed with walking? The disability activist in me says this is not my problem as the disabled person, its more of a problem of the wider world preception of me, of us.  A wheelchair (or a cane or insert your device of choice here) does not mean we failed, it does not mean we are somehow a lesser being, it does not mean we gave up.  It means we get to get out of bed today and see the world from an upright position, it means we are particpating in our communities, in many cases it means we can go to work or school safely, it means we can carry our laundry to the drier, be social, cook our meals, it means we can play sports, go for a walk (roll), it means we are out living life.

The fact that society and dare I say medical science does not see us that way is not  the disabled person’s fault. Its certainly not the 3 yr old with CP who dreads PT every day and begs to go home the whole seesion who cries after trying to walk in the bars for 20 solid minutes.  But its the kid who loses the most with this preception. What if instead of failing we could give him some freedom and acceptence to suceede?

I am not saying we should not encourage kids with mobility impairments to walk. By all means PT is essential for pain control and to maximize strength. And every child should have the chance to be as mobile and yes to try to do it in the convetional manner.  And PT is hard and painful and we shouldn’t give it up because of these things. But it should be realistic, fruitful and not defeating.  PT and walking is not the end all of early intervention for kids with physical disabilities. And as a future pediatrican it won’t make the top of my list of concerns for a disabled child. I am much more interested in their physical health (like eating, sleeping, breathing health), ADLs (activities of daily living), their mental health, their social health and that their childhood is not one of defeat and failure but one of joy and empowerment.

23 yo White Female with chronic abdominal pain, insomina and an obession.

There is an ache in the pit of my stomach. Its familiar although not comforting. Its the sort of ache that wakes you from a really wonderful dream  and you sit up in bed and wonder if holy snark I was supposed to be at work an hour ago.  Then you look over at your alarm clock and see Oh Thank God its only 3Am I can sleep a little longer. But the thing is you don’t want to sleep anymore because of the ache and the adrenaline now flowing in your veins.

I get this ache when I see something that is frighteningly awesome and completely unavailable to people who really need it. It wakes me from my American, middle class, over-educated dream to the reality of oppression, poverty and injustice. I had this on Saturday at the free clinic with the little girl who needed intervention and parents couldn’t afford it.  I had this ache on and off for the past month.  Part of my pediatrics rotation is a community health project. Mine focuses on chronic illness and disability. I have visited special education classroom, an augmentative communication lab, home health visits for kids on vents and NICU follow up.

I can’t help but look at these kids and see faces (and some facies), glimpses of lost children who live a half a world away.  I can’t help but compare. I can’t help but mourn the lost of so many who had thoughts, ideas, lives to share with the world. I can’t help but feel the wieght of the prejudice as I see what can happen in a world where it doesn’t exisits. I know that there is a lack of resources and I don’t expect American early intervention and rehab technology to translate perfectly into Eastern Europe and the former Soviet Union (or elsewehre for that matter).  But of a lack of resources does not justify the horror of letting a child with a heart murmur (insert: Downs, CP, Not Cute (seriously), Sticklers, Clef Lip, Deaf, Club Feet) rot developmentally in a institution.

That horror is ever more acute and repugnant when contrasted with what could be, with what is in another world.

Its an ache thats not going away.

pediatricians do it better

really why would I ever want to do anything but Peds: in no particular order

1. Kids are less smelly than adults.

2.  Actual acknoweledgement that 60% of medicine happens outside of the world of science in the realms of family, community, culture and ecnomics.

3. Kids don’t do it to themselves.

4. You can tickle your patients and not get charged with assult.

5. You get to help parents be beter parents.

6. BABIES.

7. You actually can have a life outside of medicine if you want it.

8. There is still time to help your patients make good healthly longterm choices.

9.  Your patients are resilient, most often happy and will forgive most painful procedures with the offering of a sticker.

10. Part of your physical exam includes tossing balls, hopping on one foot and drawing.

11. Your patients will outlive you and so will your life’s work.

12. Did I mention that they let you play with babies?

13.  You actual get to be a little bit creative from time to time.

…and now I have to go to clinic but I could go on for hours.  yep life is sweet. So sweet that during my pediatric clinical skills exam today, I actually marveled at the fact that I was having a good time taking a test. Seriously….

Drinking the Kool Aide or atleast sampling it.

A group of churches including mine have come together here in Winston and started a free clinic. Its held at my church once a month. Today was the first day I have able been to go in a while.  This was the week in NC where all kindergartners who had not previously filled out their physical forms got a letter saying they would be kicked out of school if they did not get a physical and vaccinations. The clinic was a mess.  I was hurried to a room given a file and told to just do whatever needed to be done, the doctor would check behind me.  Honestly if we had a first year medical student I think they would told them the same, we were desperate. So I threw myself into exam after exam of  5 yr olds who ranged from terrified to crawling up the walls.

About half way through the morning, a family with two kids, 4 and 6 came in. The Mom hands me a giant pack of papers, her daughter has just started kindergarten and has already been suspended for hitting the teacher. I take a good development history and undercover she had a global speech delay at 3 (as in not talking at all) and has only seen a doctor once or twice in her life. The parents can’t afford insurance because they both work they don’t qualify for Medicaid. The little girl is running around the room in circles one second or in her Dad’s lap messing with his face the next.  She doesn’t seem to understand my questions or instructions, she fails her development exam across the board, its obvious she has a global delay. Her Mom thinks its ADHD, I know that its far more than that. This is a free clinic. We give vaccinations, we do acute care, we even monitor BP and Diabetes a little bit but we can’t help this little girl. She needs a developmental pediatrician referral and is going to have a long medical journey one that we are already at least 3 years behind on. The window for early intervention is gone.

Its maddening. These people aren’t unemployed, they love their kids, they most likely are not criminals or dealing drugs, they are part of the PTA, they go to church and they don’t live in some god forsaken corner of the world, they live in America.  Yet they can’t afford health insurance and they don’t qualify for assistence.  So who suffers because of this? This little girl does, so does her family but don’t think it stops there.  Her teachers suffer having to deal with her behaviors and society suffers because we get to pay for it if she ends up in trouble legally or ends up on assistance later because she drops out of school or can’t stay employed.

For all the resources we have in this country, are not our children among our most valuable? Are  they not the ones who will run this country in 25 years?

In the mist of  Sarah Palin action figures and all this talk about hope and change…I sit in muggy NC  with tears of fustration in my eyes because from my point of view my country cares more about the value of a barrerl of oil than the life of a child.

life yeah.

I keep writing blog drafts and then not publishing them because well they stink. Life is sweet right now though. I am on pediatrics and loving it. I could have stayed in newborn nursery forever. It is impossible to be unhappy when you are surrounded by tiny brand new perfect little creatures.  It is amazing to watch them grow and change and develop into little people. So  yeah I have found my calling for sure and for some reason I have no profond things to write about.  Give me a week or two perhaps I will have less writer’s block.

Beyond that, its nearly Fall which is my favorite time of year. I am i the mist of being in charge of a church mission trip to Romania which is cool to be sharing my passion for empowering street children and orphans with my faith community but scary because I am sort in charge of 20 Americans in the developing world. I am sure there will be some good stories.

as always I have lots of studying I should be doing, so I cam going to get on that.