Tag Archives: special needs

The Thrill of Victory

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Yes, I know it’s been a few months. But I’m back now. Believe me, I haven’t run out of things to say!

Anyway, something that happened at school with my oldest girl, and I felt I had to share it.

After years of working with the school, my daughter, a sixth-grader, finally has an IEP (Individualized Education Plan) that identifies her as being on the autism spectrum. IQ testing puts her just two points shy of gifted/genius, but she has glitches in the way she learns and processes information. She also has attention issues as well as the kind of anxiety that is not uncommon to kids on the spectrum. The world is so “other” for aspies like her, and they tend to be in a state of constant tension when outside of the comfort of home.

All this means that when tests come up in school, my daughter is supposed to be given extra time, and an aide is supposed to be made available to read her the questions and help her stay on task. That’s part of her IEP. It’s documented in paperwork required by the US Department of Education. It’s her legal right.

A Recipe for Failure.

Well, she missed a history test last week because she was out with strep. When she came back to school this Monday, her teacher sent her to the library to take the test. She was pretty confident going in, because she had done a bang-up job on this unit. She even earned a 100% on a major project related to the topic! I can’t tell you how proud she was when she saw that grade.

She bombed the test. Epically.

As soon as I found out, I e-mailed her teacher to investigate. It turns out that a number of things went wrong, which should never have occurred.

First, she was sent to the library—a very busy place filled with distractions—to take the test. Next, she was there all alone. There was no aide to help her. No one checked on her progress or answered any questions she might have had. No one even looked in on her during the hour-long test. And finally, she had to deal with a change in routine. This may not be a big problem for neurotypical kids, but any change like this—especially if it’s linked with something as scary as a major test—can send aspies like her into a tailspin.

In other words, this was a recipe for failure.

Daddy Goes to Battle.

When I asked about this, her teacher said that my girl could retake the test, but that it wouldn’t be given full weight because it was a do-over. The highest grade she could get was a 70. Then, to add insult to injury, the teacher told me that on the day of the test she had read the questions to everyone else in the class and made sure they stayed focused. So not only was my girl denied the accommodations she has a legal right to as a special-needs student, she didn’t even get the same help that her neurotypical peers got!

It took a few hot e-mails from me, but I finally made it clear that this teacher was not complying with my daughter’s IEP, and that my daughter deserved better than a chance at a C. Somewhat reluctantly, the teacher agreed to give her the test again, this time with the chance to earn full credit. I didn’t get an apology from the teacher, mind you. Much as I would have liked one, I knew better than to ask for the moon. I was just happy to have won on this one.

The Thrill of Victory.

Now I know that this isn’t a huge issue in the grand scheme of things. The teacher messed up, I brought it to her attention—politely but aggressively—and she fixed it. But it’s a battle I should never have had to wage. My daughter has an IEP for a reason, and her teachers are expected to comply with it.

I’m glad I waged this battle, though. It showed me that I need to be more pro-active when it comes to advocating for my kids. It showed me how quickly some teachers will back down when challenged. And best of all, it illustrated the oft-used saying: “You’re the only advocate your child has.”

Not to mention, it felt really, really good to have a victory under my belt!

A Whole Blue World

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As many of you know, I reached my fundraising goal of $1,500.00 late last month. What a great feeling, both being able to raise so much and seeing the support that so many friends have given us. Every donation has been a moving testimony to Katie and me that we’re not alone in this journey.

But as inspiring as it has been to come this far, I believe we can go farther. I know there are still people out there who need just a little more encouragement—or a couple more reminders. There are still aunts and uncles, cousins and godparents, co-workers and neighbors, friends and even frenemies out there, just waiting for another invitation.

So here’s the new incentive. If I can get to the $2,000.00 level before the walk, I’ll dye my whole head blue. Yup—the entire cranium. All it takes is $500.00. That’s just $50.00 from 10 people. Or $100.00 from 5 people. Or $25.00 from 20 people. That’s not too hard to imagine, is it?

And if you do give, here’s how your donation will be put to work.

First, there’s Autism Speaks’ research program, which makes grants to pediatricians, geneticists, psychologists, neurologists, and other professionals delving into the causes and treatments of autism spectrum disorders. The program also includes the Autism Genetic Research Exchange (AGRE), which is building a comprehensive research database comprised of DNA, clinical, and medical information from families with two or more children on the autism spectrum. Needless to say, our family is a mother lode of information for them! We’ve been part of the AGRE project for the past three years, and it feels great knowing that we’re able to help.

There are also a number of online tool kits developed by Autism Speaks. The most popular is their 100 Day Kit, which was created for parents of newly-diagnosed children. Those first few months are often filled with anxiety and loads of questions, and this online tool offers expert guidance to help parents acclimate themselves to their new reality. Other tool kits give parents information concerning medication options, various behavioral treatments, and navigating challenging events like dental visits and potty training.

Next, there’s Autism Votes, the lobbying arm of Autism Speaks. The purpose of this group is to advocate for laws that will protect people on the spectrum. Some states still don’t require insurance companies to cover behavior therapy or speech and occupational therapies to people with an ASD diagnosis. Autism Votes is in these states, working to convince lawmakers that the upfront cost of these requirements is far less than the long-term costs of caring for people who never learned the skills they needed to help them function in the outside world. Autism Votes was also instrumental in getting the Combating Autism Reauthorization Act (CARA) through the House and Senate. This act secured nearly $700 million in federal dollars over three years for autism research, treatment, and services. It’s still not where it should be, but at least there’s movement.

See how much good you’ll be doing if you make a pledge? It’s not about making me dye my hair blue; it’s about helping to improve the lives of families touched by ASD. It’s about figuring out what causes this thing in the first place. It’s about making the world a more welcoming place for folks on the spectrum. So if you haven’t made a donation yet, go ahead. Push me over the $2,000.00 mark. You can help make a difference in so many lives. And if you’ve already donated, thank you so much. You’ve already made a huge difference!