Lost in the details…

As the parent of a special needs child, one of the requirements for accessing public education is developing an I.E.P.  An I.E.P. is an individualized document that guides the delivery of special education supports and services for a student with a disability.  For 8 years, I have been attending I.E.P. meetings.  First for Beau and now for Bitty.  These meetings, for the most part, are usually uncomfortable and unsettling experiences.  Imagine a room full of specialists analyzing your child’s abilities, measuring their milestones and determining how much support they require in order to be successful in a school setting.   It is supposed to be a collaborative effort between the parents and the school system’s team of specialists to devise the best plan for the child’s success. 

And while all that sounds good on paper, what happens in that room is something quite different.


“When did she first learn to crawl?” asked the psychologist

“I’m not sure…maybe 14 months.”

“When did you become concerned that she was not crawling on schedule?”

“I wasn’t concerned.  I thought she was doing great crawling at 14 months.”

“But what about in comparison to your other children?”

“You mean my son, Beau?  He also has Down Syndrome.”

“No, I mean your typically developing children.”

“I never compared her to my other children.  Bitty has Down Syndrome and we were thrilled when she learned to crawl…even at 14 months.”


Needless to say, I became defensive.  One question after another.  One specialist after another. 

“Does she laugh?  Does she throw tantrums?  How many words she have?  Does she feed herself?  Does she understand commands?  Does she run?  Does she show empathy?…”


Here’s what I know…

My child is the most miraculous, marvelous creature.  She’s a loving, intelligent, funny, personable, imaginative, curious, caring and determined little girl that is constantly learning new things and making new friends.  She is everything good in the world and every mother’s dream come true.  She is the heart of our family and I believe she truly makes the world a better place. 

And so today, please forgive me for not appreciating the I.E.P. process. 

For each raised eyebrow, blank stare and line of questioning I endured – took a little bit away from everything that I celebrate about my little girl. 


2 responses

  1. Just read this Amy. So sorry you have to experience this. I totally agree. Each reevaluation and most IEP meetings we have for Lucas leave me with countless sleepless nights, fear, dread and anxiety. All of this before the meeting. Afterwards, I feel broken and somber. It is like all of the progress is just forgotten in that document. I wrote hundreds of IEP’s in my life before Lucas, and I feel like no person is truly prepared to write such an important document until they have had the honor of truly understanding that child’s importance. Importance to the community, school and their family. Writing IEP’s after having Lucas became much more meaningful. I hung on every word a parent said, and tried to really understand their children to the best of my ability. I wish more IEP teams put emphasis on the whole child and their strengths and abilities rather than on the barriers they have to overcome. Isn’t it more productive for an IEP team to learn how the child can be an important member of an inclusion setting and how they can benefit from the learning process, rather than dissecting how they compare to their typically developing peers?

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