Scott MacIntyre, who is visually impaired, rose to fame on Season 8 of the popular television show, American Idol, placing 8th out of 110,000 contestants. His mother, although less famous, is a light who shines awareness on the struggles that so many parents of children with visual impairments encounter.
Carole MacIntyre is a mother of three – Scott, 24; Todd, 21; and Katelyn, 18. Both Scott and Katelyn are visually impaired due to Leber’s congenital amaurosis. In an exclusive interview with the Envision Foundation, Carole details how her family has managed to deal with raising three children, two with special needs.
When did you learn that Scott and Katelyn had vision issues? How did you handle the news?
It wasn’t until Scott was 18 months old that we began our year-and-a-half long quest to have him diagnosed. As an infant, Scott didn’t “look” blind, and it was very difficult to convince doctors that we needed our child examined. Some doctors said that we were simply overly concerned parents. “Just have your husband take you out to dinner and shop at the mall,” was literally one of the suggestions we received from a general practitioner. It took a year-and-a-half before a doctor gave a “blindness” diagnoses, and depending on which doctor we saw, we received widely varying diagnoses. Katelyn was born six years after Scott, and she had nystagmus and strabismus, which made the initial road to diagnosis easier than Scott’s had been, just because she had eyes that looked “different.”
In both Scott’s and Katelyn’s situations, we handled the news fairly well. We were not crushed, depressed or angry, simply because we believe every child is a blessing, regardless of their abilities or disabilities. We know this ability to accept bad news is not the same for other parents, and we truly understand how it can be totally devastating for some parents when they receive the news that their child is blind. However, our frustration in not being able to initially receive Scott’s diagnoses actually led to a sense of relief and redirected vision for our young son’s life, and six years later to cope with the news of Katelyn’s blindness.
Why did you choose to home school your children?
Two main reasons: academics and closer family/sibling relationships. When Scott was a toddler, we were told Scott would have to be held back a year before starting kindergarten. Well meaning specialists in our IEP stated “all blind children are late bloomers.” While this statement may hold some truth, I was determined not to waste the year that Scott was delayed and began home education when he was 5 years old. It worked so well that I decided to continue the next year.
We never set out to home educate all three of our children from kindergarten through high school, and to this day, we have not met any other families who have done so with two blind children (we would like to meet you if you are out there!) After 19 years, I finished homeschooling our youngest child, Katelyn, last year. She is now 18 and attending college out-of-state as an honor student on a full academic and vocal performance scholarship. After enrolling in a university at 14 years of age, both Scott and Todd graduated from university honors programs Summa Cum Laude in their respective degrees (Scott: Piano Performance, Todd: Economics and Music Theatre) at 19 years old.
Were you able to teach Scott and Katelyn adaptive techniques on your own, or did you utilize outside resources?
Both my husband and I borrowed or bought books so we could learn and work with Braille and orientation and mobility on our own with Scott and Katelyn. We also included a lot of computer technology in our training for our children. When Scott and Katelyn were both in first grade, I was teaching them three different types of reading mediums: Braille, large print and computers.
The biggest adaptive technique that I spent a lot of years developing in my children was self advocacy skills.
What resources were vital to you as you raised your children, especially Scott and Katelyn?
Living in Southern California, we utilized the Braille Institute and their services. When we moved to Canada, we utilized the services provided by the Canadian National Institute for the Blind (CNIB). When Scott lived in England, he utilized some of their services provided by the national blind organization there. When we moved back to Arizona, we were unfortunately denied services simply because Scott and Katelyn were home educated, but because I believed that education for my children was without borders, I used services and books from out-of-state.
As a parent, how do you balance the needs of each child so they receive equal attention, especially when two have special needs, but one does not? Did you ever struggle with providing Todd with the same amount of attention as Scott and Katelyn?
We were very aware early on that Todd could be overlooked just because he was “stuck in the middle” between two special needs children. I never read any books on this subject, but I somehow knew instinctively that it was very important to allow Todd to grow up as a normal child, which meant not laying the burden of assisting his siblings on him at all times. He was, and still is, a very naturally helpful child and it would have been easy to fall into always relying on him to help out.
To combat this, we made sure that our middle child who was not blind had time with just mom and/or dad alone everyday. We also made a special effort to play sports with him that Scott and Katelyn could not take part in.
How do you know when it’s OK to step in for your child?
It is definitely a balancing act. I always took the view that I wanted my child to learn how to speak up for him/herself; so many times, I would wait longer for intervention than another parent might. This is valuable for two reasons: It teaches your child that you (the parent) are not going to “fight” all their battles for them, and it teaches them to speak up for themselves. I also was not a parent that left my kids unattended; I was usually within earshot or had a visual on them most times, so I could step in if it was warranted. All three of my children are now very good at expressing themselves, and I attribute this to some of my letting them “figure it out” when they got into a difficult situation. Many times, I would discuss with them how they could handle it or, in hindsight, how they might have handled it differently.
Did you handle discipline problems any differently than a parent with a sighted child would?
Some of the “discipline techniques” I employed were raising my children with related behavioral consequences. For example, if my child didn’t want to brush his teeth at bedtime, the related consequence would be that there would be no cookie after lunch or no sweets of any kind the next day. We never spanked and did not use “time outs” either. Most of our “discipline” was simply having a consequence for wrong behavior, just as we did with Todd, our sighted son.
Did Scott have chores and responsibilities as a child?
Absolutely! Just like his sighted brother and visually impaired sister, he had to vacuum, dust, fold laundry, help in the kitchen, change sheets, and even clean toilets. No “breaks” or “passes” were given to my two children who were blind. They learned from an early age that it was pretty normal to have chores and responsibilities.
Was it difficult for you to let your children engage in normal peer activities?
When my kids were young, I wanted to expose them to as many activities as possible, even if that activity was “unsafe” for a blind child. In fact, when I was told that it would be too difficult to let them learn to ski, ice skate, horseback ride, tap dance, ballroom dance, salsa, do gymnastics, or other activities, I went out of my way to provide these opportunities. It definitely was a challenge.
Sometimes I had to convince a teacher that it would be okay for my son or daughter to enroll in their gymnastics class, for example. Many times, I acted in the role of “body positioner” for Katelyn’s tap classes. In some places we lived, the city would provide an assistant as part of an adaptive program, but that was the exception rather than the norm.
Were there choices that you made with Scott that you would now change if you had it to do over?
Absolutely not. I definitely try to live my life with no regrets. No parent is perfect, so I woke up each day and tried my best. We had many days that seemed overwhelming, and months where there just seemed no end to the doctor visits and appointments. But I realize the joy in life is in the journey, just being able to have time to spend with my family members, even if it was in doctor’s office or hospital rooms. Scott is now traveling all over the country performing and speaking; Katelyn is in California in college; and my middle son Todd lives and works as a lead actor/singer in Japan for the biggest ticketed show in Tokyo Disney.
If you could say one main thing to parents out there who are raising a visually impaired child, what would it be?
Never give up! As hard as the road becomes, don’t quit! Ask questions. If something doesn’t seem right for your child, investigate it. Remember – until your child learns to be his or her own advocate, they need to rely on you to be in that pro-active and loving support role. Have a spirit of tenacity in yourself and develop that in your child.
Why is it important to your family to advocate for Envision?
When we learned about Envision’s programs and services, we were blown away. We are extremely impressed with the vast range of services that Envision offers. If we had lived in the area, we would have been thrilled to take advantage of all the wonderful options Envision makes available.
Scott MacIntyre is slated to appear as the keynote speaker at Envision’s Employee Awards Banquet, to be held August 5, 2010. In addition, MacIntyre will perform a one-night only concert to benefit The Envision Foundation. Sponsorships are available at levels of $500, $1,000, $1,500, $2,000, $5,000 and $10,000.
