CCAKidsBlog.org is pleased to announce that Paula Guzzo, CCA Board Member and Past Chair, will be writing a series in October dealing with Educational Advocacy. As you'll soon find out, Paula is an amazing advocate, mother, volunteer, and leader. This post is Part One in our October Series.
Thinking about our 30-year journey with Scott, our son born with Crane-Heise Syndrome, I’m wondering how I can cram so much in the four blogs I agreed to write about educational advocacy.
Realizing that some of what I write will sound archaic to many readers, we’ll start with some history. . .after all, how do we know where we’re going if we don’t know from where we came? A great impact was made on my husband, Bob, and me years ago when we had the privilege of meeting the dear women who fought like momma bears to get a law signed in 1975 to allow their children with disabilities the right to an education. Without them and their persistence, my child (and possibly yours!) might not have had the right to an education.
When Scott was born in 1983 there were no laptops, cell phones, e-mail, Internet, Google, Facebook, Web casts, chat sessions or on-line support groups/resources. Research about Scott’s undiagnosed condition (he was diagnosed at age 11) was truly done “old school.”
|Scott at just 3 weeks old in NICU|
At the time of Scott’s birth, we both worked in the pharmaceutical industry. Bob was a Marketing Sales Support Manager at Mead Johnson & Company, the makers of Enfamil, Prosobee, and other nutritional formulas. I, a Pharmaceutical Medical Representative for Syntex Laboratories, spent my workdays talking with doctors, nurses, and pharmacists in our tri-state area of Indiana, Illinois, and Kentucky.
Bob utilized the services of Mead Johnson’s Medical Research Library. Our two local hospital medical libraries were available to me. We hounded Scott’s doctors to give us the names of suspected syndromes. We then gave key words (now known as tags/hashtags) to the librarian--the human search engine--who generated a list of relevant articles. We marked the articles we wanted, the librarian ordered them, and 2 weeks later we would finally receive them.
We weren’t so fortunate on having resources for educational supports. Occasionally, there were meetings for parents about grief support, insurance, stress reduction, etc. In order to attend meetings, though, we actually had to hear about the meeting! There were no mass e-mails or Facebook posts. At one meeting, we were asked for future topic recommendations. Since a provider of speech, occupational, and physical therapies had single-handedly cut Scott’s services, I replied that I’d like to know more about his and our educational rights.
|One Year Old & Full of Cuteness!|
The information gained at that meeting was the basis of what has been a 27-year advocacy journey for us. Our advocacy was initially only on Scott’s behalf. Other parents soon started asking for information. Having worked at a law firm while I was in college, I was (and still am!) intrigued with the legalities of advocacy.
When it was time for Scott to start school, we were told that “children like that” attend the Multiply Handicapped Class—in a school 25 minutes away by car or 1 hour 10 minutes by school bus. It never made sense that being educated only with students with disabilities would prepare Scott for an adult life which would not be segregated. We had every intention of Scott being a part of life (not apart from life!). Phone calls to private schools resigned us to Scott’s only option of attending public school in a segregated classroom.
Case conferencing was held and Scott started school. The one thing which helped our comfort level the most was the classroom teacher inviting me to spend the first day of school in the classroom training her, the teacher’s aides, and the nurse about Scott’s extensive care. The nurse had tube-feeding experience but she was uncomfortable with the mucus which drained down Scott’s cleft palate onto his tongue. She called me multiple times during that first year to pick him up from school because he “might be sick.” After trips to the doctor and assurances that he didn't have as much mucus as a typical child, it was time to find out if the nurse could continue sending him home.
A phone call to InSource informed me that the nurse was denying Scott his right to an education by frequently removing him from school. We considered it a major victory when the school corporation nursing supervisor talked with Scott’s doctor and instructed the school nurse that Scott was to be allowed in class.The school nurse also determined that Scott was to be fed only by her in her office. Um. . .where do all of the sick kids go? Right—into her office. Essentially, Scott was fed in the sickest part of the school. He was not going to the cafeteria, so he was missing out on social activities and the opportunity to develop dining etiquette with his peers. Calls to the attorney at the Indiana State Department of Education armed us with case law references to convince the principal and the special education director that Scott could be fed in the cafeteria by a trained assistant. Whoo hoo! We were quickly learning that knowledge was power in obtaining what we felt was an appropriate education for Scott.
|Scott's First Year of School|
Soon after that, our special education director invited me to serve as the parent representative on the corporation’s Assistive Technology Team. He invested in me by spending school corporation Comprehensive Service Personnel Development dollars for registration to a conference where I received invaluable information about effective advocacy and about the use of assistive technology in education. This helped fuse the collaborative school/home relationship that we enjoyed throughout Scott’s educational years.
You’ll hear about the rest of Scott’s educational journey in next week’s blog.
This link to the Directory of Parent Training and Information Centers (PTI) and Community Parent Resource Centers (CPRC) has a listing by state.