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Anne VandeMoortel

Terminology can be tricky. When my daughter was born with Prader-Willi syndrome, a genetic disorder, there was still a Crippled Children’s Clinic. Exceptional Parent was the magazine I read each month. Mothers at support groups scolded me for using the terms “handicap” and “disability,” telling me to say “differently abled” and “special needs.”

The magazine proclaimed me as an “exceptional” parent because I was parenting an “exceptional” child. As far as I was concerned, all children are exceptional — just as I think everyone has special needs, and all of our abilities are different.

I think these terms confuse parents, family members, and the community.

Some ask why we need any terms to distinguish people from other people, proclaiming the words alone separate a group of people from the whole of humanity. I disagree. defines “word” as “a unit of language ... that functions as a principal carrier of meaning.”

The key to this definition is “principal carrier of meaning.” If I need scissors designed for people who are left-handed, I use the words “left-handed scissors,” and my meaning is clear. I think using words with a clear meaning is essential to making sure one’s individual needs are taken into consideration.

Yes, all children are born with special needs, but some are born with needs totally foreign to their parent’s knowledge base. Sometimes an army of specialists is needed to teach parents how to care for a child with challenging conditions. These are the children to whom I am referring; these are the parents who I consider part of my tribe.

I am thinking of these parents because the waxy smell of new crayons hits me every time I enter a pencil- and binder-laden store. It’s “back-to-school” time, a phrase causing conflicting emotions in parents, but most assuredly in the aforementioned parents.

I recently have had conversations with parents whose little ones are just entering the educational system and parents whose children are in the process of exiting formal education. Our conversations have made me realize that the thoughts, concerns, and panic-stricken middle-of-the-night anxieties I once had were not exclusive to me.

Upon entering the school system, one’s child undergoes many evaluations. I remember thinking that they weren’t getting accurate assessments of my daughter because: 1. Somebody other than me was telling her what to do. 2. It really is naptime. 3. She’s answering correctly, but they don’t understand her use of words the way I do.

The list could go on as to why I thought sending her to school had to be a horrible mistake. She was only 3, still a baby really. How on earth was I going to rely on somebody else to tend to her every need? It had taken me three years and I was still unsure of myself. I just wanted to have more hours of reading, cuddling, and playing. More hours of her not growing up.

When it came time to exit the school system there were just as many questions, beginning with: What will she do next?

Will I need to get an extra job to pay for her daily care? Will I need to quit my job to care for her myself? Is there any day program or job that will be suitable for her specific needs? Once again, I wanted more hours of her not growing up.

Fortunately, she thrived in school and in her job, but those concerns were very real, and the same questions are now very real for the members of my tribe who are currently in these situations. I hope they have peace while waiting for the answers.

Sometimes the answers are completely unknown to everyone involved and have to be created. I hope the answers will reveal themselves, and that they will be perfectly appropriate for each person’s needs.

I hope the answers ... will be perfectly appropriate for each person’s needs.

Anne VandeMoortel is a Moline school nurse, blogger, grandmother of five, Prader-Willi mother, serial hobbyist, and collector of people and their stories.


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