Jill remembers being in the recovery room the day her son Jon was born. When her husband returned to her side after checking on the baby, she described him as “changed.” The doctor then explained to her what he had already shared with her husband; he had identified a few markers for Trisomy 21. When the doctor shared the more common term, Down syndrome, Jill's limited understanding and experience provided her with a not-so-optimistic vision for her son’s future.
It did not take her long to adjust to what she refers to as “the new normal” which included weekly visits from an early interventionist and various therapists. Jill connected with other families of children with Down syndrome and the fears Jill felt the day he was born began to subside.
Life went along smoothly until Jon was in first grade. His teacher was not as eager or adept at including Jon, as was his Kindergarten teacher who was enthusiastic and creative. Jill reached out to Raising Special Kids. She recalls, “One of the most important things I’ve learned from Raising Special Kids is that parents are valuable members of any team decision-making process and their participation is required by law. Parents are powerful when given the right tools and Raising Special Kids helped me develop my toolbox.”
Jill feels Jon has also provided her with a “unique perspective” in her current position as a program advisor in the Disability Resource Center at Estrella Mountain Community College. Jill recognizes the students she works with as “risk-takers and overcomers” and hopes her experience with them will help her help Jon when it is time for him to make post-high school plans. It is a very different and much more fulfilled future than Jill envisioned the day he was born.
Jill has continued to expand her toolbox as Jon has gotten older and other parents often turn to her for advice. “I regularly refer parents to Raising Special Kids and I tell them how much the organization has helped me. I explain that the Family Support Specialists really understand because they are parents, too. And, most importantly, Raising Special Kids never turns anyone away.”