Do You Think of Yourself as a Failure?
LEILA LESSONS — FAILURE?
Failure — what does that mean?
When Leila entered public school she had been at Upward Foundation preschool in Phoenix, AZ the first 5 years of her life. Upward started out as Arizona Preschool. I was nervous about her going, as she received therapy, socialization, and a very great start.
I had started attending the Washington Elementary School District (WESD) board meetings a couple of years prior to the switch. I knew that the first few years were critical to development, especially for one who is developmentally delayed as a result of her genetic defect — Down syndrome.
Upon entering public school Leila went into a program called the Transition Program. It was never very clear — transition to what?
I loved the teacher. She was excellent. However, as Leila was likely somewhere in the top third of the intelligence spectrum for persons with Down syndrome, after the two years in Transition she was downgraded to a double classroom with two teachers and a lot of students who were not ambulatory and/or could not speak.
I’ll never forget — the teachers were DeBarba and Miller (ladies). By the way, both these classes were at the segregated handicapped wing of the Sweetwater school, not in our neighborhood.
Do you know what an IEP is? The letters stand for Individual Education Plan, a quasi contractual plan agreed upon and put into place by a team, including the parent(s), teachers, therapists, etc. This plan had to be carried out by the school for the benefit of the student. I fought hard to get what I knew Leila needed.
Remember a previous article on Parent’s Rights, Section 4, Right #11? THE RIGHT TO BE THE EXPERT-IN-CHARGE? Well, I was and am the expert-in-charge.
I knew they weren’t carrying out the IEP, and if I didn’t intuit this, I also had information from the “inside” from someone who would tell me, but no one else, afraid to lose her job.
Skipping parts of the story, which I will address at another time, we were able to take advantage of an inclusion program and get Leila to her home school, the one to which her siblings went.
DeBarba/Miller (I always lump them together) were concerned about this. They asked me, “What if she (Leila) fails?” As if they were the only ones with the answers. Wow!
Oh, my gosh! Can you believe that? Well, at the time I had run an article in “SHARING”, the newsletter I edited for the Sharing Down Syndrome Parent Support group, of which I was a co-founder. This was on “The Dignity of Risk”. That’s what I told the two-headed teacher bundle; that Leila had the right to have. The Dignity of Risk.
Today, I would have said, Leila doesn’t fail. Things don’t work, so we try something else. She doesn’t fail. Others may fail her. But she doesn’t fail. Because she doesn’t quit.
What about the rest of us? Can we learn from Leila? Not to be a quitter, not to make ourselves failures, but something didn’t work, or maybe we didn’t do the work, or it was the wrong work for us. I’ve been there many times.
I still get up each morning to face the day. In the olden days, I had children (and parrots) to feed. Today, I just have parrots to feed. And I have to get up for me. Maybe something I do today — will work! I am NOT a failure.
Oh, what happened at the local, home school and with the team there? Leila just blossomed! That’s a tale for another time.