Colten Oct 2011Colten turned 5 years old in April, which meant “Hooray honey, you’re going to kindergarten.” My husband and I were excited, but a bit in the dark about the whole process to get him there.

We attended the Special Education and IEP (Individualized Education Program) training classes from the school district. We were ready because, frankly, it would be a lot better than going through open heart surgery, which Colten underwent earlier this year (he was a total rock star, by the way!). We had our first IEP meeting with Colten’s preschool teacher, school psychologist, principal, resource teacher and the school corporate office specialist. The meeting lasted 3 hours and we were in a bit of shock afterward. “Colten can’t do this… He does this to other students… He can’t do that…” Their recommendation was to put Colten in a special education classroom (Extended Resource Room) for the majority of the day because, according to their brief evaluation of him, that’s where he’ll be best suited. They then recommended we check out another school that has more resources for “kids like Colten.”

I’m sorry, what?

We liked the school we had chosen. We went through the recommended training. We left with headaches and felt very discouraged. I was feeling scared and hurt.

(Here comes the cool part.)

Colten Feb 2011Now, whenever I feel this way, I always call on my feisty redheaded friend, Laura. She helped bring my feelings in check and helped me to vocalize my emotions, including my anger, and transition those feelings into assertive action. She shared her experience within the same school system, how her son excelled in certain areas and how they might have done things differently in others. She made a call to the school’s corporate specialist and shared how similar our stories were. Her son started kindergarten in a general education classroom, which is the opportunity I wanted Colten to experience. Alpha Mom Laura helped plant the seed with the corporate specialist who then accompanied us on the site visit.

Next, I spoke with Alex from DSNetwork who recommended I give my friend Janet a call. I’m so glad I did! Alpha Mom Janet not only gave me sound advice (based on both her child’s experience and her background in education) but she CAME WITH ME to our site visit. I couldn’t believe it! She gave me the terminology that school staff (teachers, corporate specialists, resource workers) use and helped guide me to vocalize my rights for my son. We left that site visit feeling very reassured that the school would help benefit Colten’s needs. But I knew it still came down to the final IEP.

I also reached out to my friend and Alpha Mom, Maureen. Now Maureen is a bit of a soft, gentle tiger. She currently works at Raising Special Kids and she came to my home on the Friday afternoon before the Tuesday IEP meeting. She helped my understand more about the IEP process, the reasons why certain things “may” happen in the school systems and she provided me with tools to use during the final stage. She also agreed to attend the IEP meeting with my husband and me!

The day before the IEP meeting, I called one final Alpha Mom, my dear friend Diane, who has a daughter in kindergarten in the same school district. I told her the story and she immediately said, “When is the IEP? I’ll be there.” Wow!

All these phone calls, site visits and meetings took place within 10 days. With the support of my Alpha Mom Network and having printed some of the reading resources from the DSNetwork website, I was ready to present my case.

The day of the IEP arrived. This time, my husband and I ran the meeting. We started by acknowledging the previous evaluation from the school and that they, too, want what’s best for Colten. Now, I know that this may change – perhaps he’ll be in Extended Resource Room full time in 5th grade – but for now, kindergarten, he needs to role model his typical peers. By the time this meeting was over, the school agreed to have Colten start kindergarten in a general education classroom, pulled out for language and math, with an aide.

Let’s be honest. Being an advocate for our children is always going to be there. Don’t assume that people know what you’re thinking or that everyone knows about Down syndrome or that everyone knows what to say or how to say it. Advocacy is my responsibility as a parent. But with that responsibility, it’s my job to help educate people to be knowledgeable about what these children can do and to not put limitations on them because of their “dis”ability.

Christel familyI’m very blessed to have these women in my life and very grateful for their love and support. Life is hard enough if you let it be. Some of the best parts of my life have been gifts given through my son. I wouldn’t change a thing.

Thank you for giving me this opportunity to share my story.