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WHO ARE YOU - PARENT OR CAREGIVER
Photographs by Christopher M. Gauthier, Evidence and Artifacts
Sara and Jason McCarter

Parent or Caregiver

QUICK TIP:
The Individuals with Disabilities Education Act (IDEA) is a law ensuring services to children with disabilities throughout the nation. IDEA governs how states and public agencies provide early intervention, special education and related services to more than 6.5 million eligible infants, toddlers, children and youth with disabilities. Learn more.


Sara and Jason McCarter are parents of Magnus, a child affected by autism. Sara reflects on when they received their son's diagnosis, the challenges of raising a child on the autism spectrum, and the greatest gift they received yet.

"It’s interesting how the date of my son’s diagnosis sticks with me the same way other dates, such as birthdays, do. Although not on the calendar, and without celebration or ceremony, every July since 2009, I think back and remember all the events that lead up to and marvel at the changes in all of us from that small medical office when the practitioner said the words, “your son has Autism Spectrum Disorder, or classic Autism.” For my husband, his initial feelings were that of relief. Finally something to identify and give name to the differences he was starting to see in our sweet boy. My reaction was to collect (not necessarily read) every book on Autism I could find and make my son’s diagnosis my life. Since that moment our life has changed drastically and I can confidently say it was for the better. We’re stronger people and the meaning of what quality of life is has been completely redefined.

We’ve been married for 9 years and our path to discovering peace started with creating a small support group in our area to find other parents of children on the spectrum to meet with. This step was the beginning of discovery that we were not alone and that there was strength in reaching out to each other and safety in numbers in public with our quirky kiddos! This gave me courage as I gleaned experience from others to learn how to better advocate for my son and find respite for us as a couple. We started working with friends and family to find date nights that reminded us that we really do like each other and that we needed each other to survive our journey well.

In 2010 after months of financial hardship (and that means marital hardship), we realized that unless we started fundraising for our son there would be no reimbursement for virtually all the support services our son needed after aging out of the 0-3 Intervention programs. It was a daunting task and extremely humbling, but we were astonished at the support we received from our community and strangers. It taught me that people want to help when they understand how they can help.

In the fall of 2011, the greatest gift we received yet was attending the four day USAAA conference in Seattle. There I met my heroes and found mentors that gave me hope and expanded my paradigm. Since the conference, we now approach life and our son from the view of acceptance, help him to see and know himself, teach him how to self advocate, and join with him in enjoying the things that make him smile. We no longer fight against our son’s differences but embrace them and this way of loving has even taught us to how better accept and love each other as a couple. We still have a long way to go and even more to learn, but I now know that hope has no limit unless I place it there.

One of my favorite questions is, “What is inclusion?”  The answer is always changing for me. Right now I feel that inclusion is more than being allowed to attend. For example, my son is “included” in a typical Kindergarten classroom. However, if he is not engaged or encouraged to participate with other children or shown how to play with other children, is he really being included? I believe inclusion is about finding different strengths that each child on the spectrum has and using those to involve them so they are more fully integrated with the world."
Sara McCarter, Mom to Magnus, "the great"


QUICK FACTS
Is it important for a physician to be board certified? The American Board of Internal Medicine commissioned the Gallup organization to poll the general public about their views on physician credentialing. "When given a choice between a board-certified physician and a physician who was not board-certified, but was highly recommended by a trusted friend or family member, 75% opted for the board-certified physician" (www.abms.org).


"I remember the excitement when my wife and I heard that we were expecting, again. The doctor said we were having twins. The announcement was implausible. The news was electrifying. At what point does a new life have an altering effect on the parents? Is it when parents first discover they are having a child? Is it during those first few hours after the baby arrives? Is it when the child is first examined at the initial visit to the pediatrician? Is it when the child does not develop normally? Or is it a combination of many events?

When we gaze back into the past and evaluate our impressions during the early stages of our children’s lives, we observe an experience unlike anything we had ever expected. When we receive a warning that our baby does not seem to be developing like other “normally developing” kids, we may either shift into early denial or become too intimidated to ask what we feel are appropriate questions. Unfortunately, when we do ask the right questions, the replies often are either not sufficient or are limiting in nature." (from Diagnosis Autism Now What? 10 Steps to Improve Treatment Outcomes; A Parent-Physician Team Approach).
— Kaplan/Burstein, 2005



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