A spina bifida update

Back in December, Rich and I were invited to a meeting at the school to discuss an evaluation of Anna's IEP (individualized education program.)  By law, IEPs are reviewed every third year for qualification purposes.  Anna had been receiving PT and OT services under her IEP.  There was a discussion surrounding the removal of OT last year, but apparently, they kept up with the services to see how she would transition to third grade, where more is expected of her.  Her IEP also noted the potential need for extra help outside of the classroom with curriculum but that was never needed.  The nursing services she receives are under a health plan and, although related, not part of the IEP.

So during this meeting, Rich and I were a bit surprised to learn that Anna no longer qualified for an IEP.  But she was born with spina bifida.  We knew (and were fine with) her rolling off of OT services but it was the PT that concerned me.  When her physical abilities were tested, she scored within the average range (albeit on the low end) for a third grader.  I thought I knew what I needed to know about IEPs but obviously, I hadn't thought it through.  Every child has the right to a public education and an IEP ensures that a student with special needs has what she needs in order to learn.  In Anna's case, PT services were to ensure that she could safely maneuver around the school, go up and down stairs and play outside with a horde of kids at recess without injury.  Her physical therapists have been so very helpful and we've learned so much from them.  Anna is better at catching herself when falling so (thank god) there haven't been additional injuries requiring stitches or staples.  She's also much more controlled going up and down stairs, but still needs to be reminded to not favor one leg.

Anna is always going to have low muscle tone.  That comes with spina bifida.  What is a current concern is the tightness in her left heel cord.  Her PT had been very much focused on stretching those heel cords.  If Anna doesn't, we can see her walking more on her toes and not descending stairs properly.  As runners, Rich and I know and understand stretching so we've worked with her PT on exercises for home.  Because she has spina bifida and this tightness is a concern, the physical therapist will check in with Anna and her teacher each quarter to ensure that all is well. So she wasn't completely dropped like a hot potato.  I was relieved to hear this and I know her physical therapist is looking out for her.

I would really like to get Anna into a better routine at home for stretching, such as a few times in the morning and again, at night.  Currently, she stretches when she feels that tightness.  For example, I caught her stretching over the weekend.  As she walked into the other room after stretching, she commented that she could now comfortably place her heels on the floor.  Which meant it wasn't comfortable to her earlier and she knew to stretch.

After Anna was released from her IEP and before I'd even had a chance to wrap my head around what to do next, someone with much experience in this area consulted with us and strongly suggested that we look into getting Anna on a 504 Plan.  A 504 Plan helps a child with special health care needs to fully participate in school.  A child may be eligible for accommodations under a 504 Plan if she has a physical or mental health disability that limits one or more major life functions.  It's important to note that a 504 Plan is considered for children who do not qualify for special education services.

Rich and I attended a 504 meeting this week and Anna did qualify, not only due to issues related to spina bifida but also because of her hydrocephalus.  I do want to note that her current teachers are not a concern.  They know Anna and are very accommodating.  We decided to establish the 504 now because she had just come off of an IEP and we figured it would be easier to do this today instead of two years down the road.  I have some concerns with fifth grade, where obviously more is expected of the kids, but my biggest worry for the future is middle school.

So what accommodations would a student with spina bifida receive under a 504 Plan?  Here's an idea of what we discussed:

• To leave any class at any time to go to the nurse or the bathroom
• To make up work if absent from class/school 
• Assistance with organization
• Placement in a classroom with a structured, organized setting

As part of our conversation with the team at the school, it was determined that Anna doesn't always feel comfortable asking to go to the nurse if at gym, music or art.  This was quickly resolved.  Anna was given special passes and all she has to do is give one to the teacher and she can leave to go to the nurse without having to ask or explain anything.  Her tendency towards disorder, which is connected to her hydrocephalus, causes her to not remember how or feel confident in navigating her way around the school so she is allowed to have a friend walk her to the nurse when she's not comfortable.

I'm happy with the meeting, the progress we've made and where we stand right now.  Thus far, everyone at the school has been supportive but we can't forget that at the end of the day, we are the ultimate advocates for our child.