Thursday, March 7, 2013

Redefining spina bifida

About six weeks ago, Rich and I met with Anna's teachers and other school members to discuss Anna's IEP (Individualized Education Program.)  We do this every year but this year was different in that it had been three years since Anna's initial IEP was drafted and every three years, IEPs are re-evaluated and redefined as necessary.  I'm not going to go through the detail of her IEP because most of you would find it boring and really, it's her personal business.  My reason for blogging about it at all is to show what a child with spina bifida can do.  And maybe brag a little bit.

When expectant parents are told that their unborn baby has spina bifida, it's not happy.  The moment is full of fear and what ifs and I don't knows.  It's scary and easy to assume a terrible outcome.  And unfortunately, there are so many outdated thoughts out there.  I think it's up to this new generation to redefine spina bifida and show that this diagnosis isn't the end of the world.  These kids lead very happy, productive lives. 

Anna's kicking butt at school.  She's right where she should be with respect to learning.  Our main concern, everyone's main concern, is keeping her physically safe.  I think her PT's assessment best describes Anna.  When you read her diagnosis and then watch her in action, she's amazing.  It's incredible how well she does.  It's when you compare her to other kids that you really see her physical challenges.

So keeping her safe and comfortable at school involves considering:
  • How is Anna going to get from one location to the next?  Does someone walk next to her?  Does someone hold her hand?  
  • Visits to the nurse.
  • Playground safety.  Anna knows her limitations so concerns revolve around her being accidentally bumped into and not able to catch herself.
  • Ability to rest during gym class.
  • Location of her classroom to the entrance/exit.

I was caught a bit off guard when, at the end of the conversation, we were told that under state law, they need to inform us if they believe Anna is at risk for being bullied.  She is not.  But it made me sad to think that there are other parents who've had to have the opposite conversation.  The other kids really like Anna.  She stands out a bit because she's so little and cute (and a triplet) and a lot of people within the school system know who she is, which apparently helps prevent bullying.  I'm also trying really hard to teach my girls to like and respect themselves and others.  Not that this would prevent them from being bullied but I hope it will help them be better people.  

Rich and I have been extremely happy with our district's school system thus far.  They offer a lot of resources and support and the teachers and therapists know Anna really well.  When we discuss her progress, they describe her in such detail.  She's not just another kid in the system.   (The same goes for Emily's and Allie's teachers too.)

  • Spina bifida is a condition, not a disease.  It can be treated but not cured.
  • Spina bifida is one of the most common birth defects.  (I personally hate to call anything in a person a defect, but medically speaking, that's the terminology used.)
  • Having a shunt doesn't mean that you will have learning disabilities.  Anyone can have learning disabilities. 


Chantel said...

I am happy Anna is doing so well. There is a little girl in Claudia's class that looks so much like Anna. She is little and cute and has similar eyes/facial structure/hair....I smile everytime I see her and think of Anna.

Tracey's Life said...

Sarah, without really "knowing you in real life" I will offer you my observation with respect to Anna's progress if I may. I also don't know or understand her exact medical issues as a layperson. It seems as though you and your family and Anna, refuse to accept the words "I can't" and with an attitude like that - there is bound to be success. Being a triplet may help in that she wants to keep up with her sisters, but it really appears that you all embrace the "I CAN DO IT" attitude and that is going to help Anna and all the girls go far in life.

You really should give yourself a big BRAVO!

Siné said...

Everytime a friend or acquaintance has had a baby diagnosed with spina bifida I send them to your blog because you do such a good job of making people fear a spina bifida dx while still being realistic. Thank you for sharing Anna's journey with the world. She is an amazing little girl.

Farah said...

Go Anna! So glad to hear this. Obviously Anna and her sisters have great parents who support them so well.

I left UroMed and am now teaching at a pre-school (working with kids was always my dream). I teach two's, but there is a little guy in Pre-K who has spina bifida like Anna does--the same level. He walks, jumps, runs etc. I told his mother about your blog since your kids are about the same age! She seems very overwhelmed with all things SB, so I think you'd be a good resource for her.

Stacey L. said...

Thanks for putting a positive spin on things. I have 4 kids, two who have IEPs and when I was telling that to a friend, she had nothing but bad things to say about the IEP process and people who "let" their kids have to have an IEP(her words, not mine). I love how you chose to see things positively, and way to go Anna!

Anonymous said...

I'm just wondering if Anna will be able to have children given the location of her spinal defect and the nerves involved.

Sarah said...

I know I'm a little late here but I want to thank you all for your positive comments.

And yes, anyone with SB can have a baby. She's at a higher risk for having a baby with SB and may have to have a c-section.