Wednesday, May 19, 2010

It Takes a Village

It Takes a Village: And Other Lessons Children Teach Us is a book by:  Hillary Rodham Clinton.  In it, Clinton presents her vision for the children of America. She focuses on the impact individuals and groups outside the family have, for better or worse, on a child's well-being, and advocates a society which meets all of a child's needs.

Today, I’m going completely off topic from my usual ramblings about arts and crafts.  I have more pressing matters on my mind of late.  I know I don’t usually go  deep into my personal life.  Many bloggers suggest steering away from stories that are too personal.  However, I’m compelled to share because my family is the center of my life.  And, I can’t focus on creative pursuits when my energy is going in a completely different direction.  Further, when it comes to special education in the U.S., it’s important to share information and experiences which is the focus of this blog post.

We adopted our son at 7 weeks of age.  He was deemed healthy and was of very good birth weight coming into the world at 8 lbs, 10 oz – a very “healthy” birth weight.  The toxicology report was negative – a very good sign.  However, he was a fussy baby and seemed a bit off.  He didn’t develop like other babies.  He missed being on time for all of his milestones except one and that was turning over from back to front.  He didn’t learn to walk until he was 18 months old.  His abilities are splintered.  When he was 4 years old, he was diagnosed with PDD-NOS – Pervasive Developmental Disorder-Not Otherwise Specified.  He excels at reading but struggles with expressive language and abstract comprehension.  My son cannot recite the months of the year without leaving out October.  His IQ score is below average.  I don’t know why it is.  I only know it’s so.  We don’t have a genetic family profile for my son.  We only know that his birthmother didn’t seek pre-natal care and imbibed in recreational drug and alcohol use while pregnant.  To what extent, how much, how often is unknown.


Yesterday, I asked my son “what does a dozen mean?”  He didn’t know.  My son is 8 years old and coming to the end of 2nd grade.  My son has an IEP – Individual Education Program under special education.  I am my son’s number one advocate.

Aren at Museum of Nat History

Since April, I’ve been preparing for the upcoming CSE Committee on Special Education meeting in June.  Advocating and preparing is an arduous task.  In my mind, it shouldn’t be as the proof should be in the pudding so to speak.  However, it is and many parents with special needs children struggle with the system, wringing their hands, losing sleep and having anxiety attacks over the whole process.  Often, they must muster up the strength and courage to face a throng of “professionals” often alone and heavily outnumbered.  It’s imbalanced because at the same time, parents rely on the judgment of the professionals to determine their child’s educational future.  The thing is, no one knows their child better than the parents.  Parents by definition according to the law under IDEA are supposed to an integral participant on the CSE/IEP team.  It sounds simple enough in this regard but sounding simple and the reality are often entirely different things.  The school districts by and large have their own agenda.  Often they will feel threatened and defensive when parents bring important questions to the table.  After all, they are supposed to the experts.  These tables need to change for the benefit of our children.  It is not about the professionals and their egos – it’s about our kids and their needs.  Period.

Parents must become a kind of para-legal in their child’s education defense.  We must research and present compelling arguments.  We must understand the law and have the courage to recite the statues.  If we don’t, our kids educational needs are at risk.  Recently, I was granted an IEE – Individual Education Evaluation at school district expense.  I am not boasting about it.  In fact, I think it’s sickening that I was placed in the position to fight for the obvious.  At first, the district insisted on putting an expense allowance cap.  I fought back and won one small victory by reciting sections of the law. 

The IEE was completed but I’m still at a stand still.  The evaluator thinks all is well in the district that my son is a sweet and highly likeable boy.  Sweetness does not fully identify and meet the needs of his educational requirements.  I was taken aback when the evaluator said to me and my husband, our son is “mentally retarded” based on his IQ score.  That he’s a sweet and loving child and everyone loves him at the school.  And, in sum, what do we expect given the level of his abilities.  The evaluator went on to say my son is working behind his peers; that he will be behind due to his challenges and that’s the best we can hope for.

My BIG concern is that the school district isn’t fully able to address my son’s educational needs and it appears no one wants to do the right thing – suggest referrals to schools that maybe, just maybe might make a difference for our son.  How will we know unless we try.  Further the tool used to measure my son’s IQ in pre-school was the Wechsler IQ test which may not be the most accurate.  It is not a true measurement of his intelligence and therefore my son is at risk of being labeled a slow learner.  In this regard, my concern is will the district not try hard enough with my son due to his IQ score and dismiss his educational needs due to a perceived lack of ability.

My argument is, if Anne Sullivan gave up on Helen Keller, Ms Keller would not have been able to rise above her disabilities.  The system will fail my son if professionals are allowed to go about their way instead of the right way and addressing my son’s IEP as according to the law.

IEPs According to Dr. Suess
(author unknown)

Do you like these IEPs?

I do not like these IEP's
I do not like them, Jeeze Louise
We test, we check
we plan, we meet
but nothing ever seems complete.

Would you, could you
like the form?

I do not like the form I see.
Not page 1, not 2, not 3.
Another change,
a brand new box. I think we all
Have lost our rocks.

Could you all meet here or there?

We could not all meet here or there.
We cannot all fit anywhere.
Not in a room
Not in a hall
There seems to be no space at all.

Would you, could you meet again?

I cannot meet again next week
No lunch, no prep
Please hear me speak.
No, not at dusk and not at dawn
At 4 p. m. I should be gone.

Could you hear while all speak out?
Would you write the words they spout?

I could not hear, I would not write
This does not need to be a fight.

Sign here, date there,
Mark this, check that.
Beware the student's ad-vo-cat(e).

You do not like them
so you say
Try it again! Try it again!
and then you may.

If you let me be,
I'll try again
and you will see.


I almost like these IEP's
I think I'll write 6003.
And I will practice day and night
Until they say
"You've got it right".


  1. I feel your pain Barbara & I am praying for wisdom, guidance & help for you and your precious son.

  2. Debi, Thank you for your inspiring words. I very much appreciate it. Sometimes, parents of special need children feel very alone so your words mean a lot to me.



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