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Gifts : Mothers Reflect on How Children with Down Syndrome Enrich Their Lives

The Gifts Outreach program provides complimentary copies of Gifts to organizations which serve parents facing a new diagnosis of Down syndrome for their child, either prenatally or postnatally. We believe that the stories in the book provide a vital companionship and support for such parents.

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Sunday, May 15, 2011


Expectations.  Goals.  Life.  

We recently learned that a former teacher at Nash’s school, who is now an administrator at a local elementary, that our expetations for Nash are "too high". This former teacher was a “sit in” at one of our case conferences before he left the elementary school. He wants to be a principal.  He is now an assistant principal.  I really thought his participation at our case conference would result that he would see Nash's abilities, not his limitations, and that this would help other children with IEP's.  Guess I was wrong.

His comment, that we, as parents, have too high expectations for Nash, basically means we aren’t realistic in our goals for him academically and socially. What to say to that?

Well, before Nash was born, we knew with my age, 39 at conception, there was the probability. We CHOSE not to have invasive testing before birth as we wanted this child. And I thank God every day we didn’t have an amnio etc. Because now, we have Nash, and he rocks!

Socially,Nash has fantastic neighborhood friends, and several from school.  As an example, this weekend Nash attended a birthday party, and it was amazing. Lazer tag, a great night. He passed IMAST, the Indiana Modified State Standard Testing, in Language Arts last year. Whatever…..still not a standardized testing fan. Yes, I have been tested out the wazoo being an attorney.  I still don't believe in standardized testing- each day a person performs differently....I could go on and on.  So I digress.

He loves his basketball. Plays on two teams- regular BB and Special Olympics. His three SO Unified Team members are from his 4th grade class, and these friendships not only benefit Nash- the kids benefit from this experience too.

Our expectations too high? Don’t know. Every child has their own agenda. “Typical” or not. Does your child’s teacher look at you at each teacher conference and say you have unrealistic goals for him/her? No, because at age (insert K through 9) no one asks you this question, because your child isn’t on an IEP and the administrators don't want to pull your child from the standardized testing to help improve school scores.

I am on the Indiana Postsecondary Education Coalition to bring a program to Indiana to allow those with Intellectual Disabilities to attend a full on campus experience. I am also working toward changing legislation to allow students with IEP’s to garner a diploma instead of a certificate of completion so they can gain worthwhile employment via the Indiana . There are many postsectondary opportunities out there for him. These are efforts that will allow Nash and others to shine - learn after high school, and obtain employment.

So I say to Mr. Administrator that never taught Nash.  If you set the bar too low it will always be met, but to what consequence?  If you set the bar high, it can be adjusted, individually.  Nash may not meet the current graduation standards that are in place.  BUT  I betcha he can meet his academic IEP goals, attend class regularly, be a productive student and participate in extracurricular activities - all that will allow him to be a valuable employeel.  Isn't that what we want from all high school graduates?  Let's change the law.

This new Administrator should realize all kids have the ability to be whatever they can be, and should never, ever, be limited at any cost, IEP or not. Our requests for inclusion and modifications, and staying on diploma track for now at age 10,  may seem ridiculous to you Mr. New Administrator, but we, as parents, are looking down the road…..and the road to our child is open.

And the Lazer Tag party his 4th grade buddy invited him to this weekend was awesome. Rock on.


Becca said...

I hope someone teaches Mr. Administrator that valuable lesson about how to set that bar. Sheesh, is he even allowed to have said that? I find it so incredibly frustrating to hear time and time again, stories of schools (teachers, administrators, therapists) telling parents that their child *can't* do something, especially if they haven't had the experience of working directly *with* that child. Nash sounds like an amazing young man, whose possibilities are limitless, as long as no one's placing those limits on him.

J Baker said...

I love this post! So much of what you have said is what we have experienced with our 10 year old daughter, also a "person first" with Down syndrome.

Rock.On.Mom.Of.Nash!! Don't give up and do not, by any means, lower your expectations for your son because of someone else. You know him well. You know him best.

Jan Steck Huffman said...

For those following...2015...Nash heads into high school this August. Yep, still diploma track. Easy? No way. Will he achieve a regular diploma? Don't know. But we advocated for our district to "allow" the State General Education diploma to be recognized and the School Board "accepted". Check your district diploma options!