Amy Costa

Thank you all for your kind comments and thoughts regarding Amy and her prom. It has been an exciting time for us, as her family, to watch her grow, and be accepted as a vital member of her school and our community. Some have asked how it is we were able to have Amy included in the “regular” school setting and were able to facilitate this inclusion for her. Here in NH, inclusion is a concept that is strongly considered as an option for even the most delayed children. As a family, we made a choice early on that it was important for Amy to remain a visible part of her community. We noticed that even at an early age, Amy loved being around active, healthy children. Of course, being the second of our five children, she had plenty of action right here at home. Our first four children were born in a five year span. When it became obvious that Amy was going to have a lot of medical and developmental challenges, Gerry and I asked ourselves two questions. The answers to these two questions formed our plan for her future. We asked ourselves what we would most want to hear from Amy (other than “I love you, Mom and Dad.”) if she could speak to us right before her death. We decided it would be, “Thanks, Mom and Dad. I had a heck of a good time while I was here.”, and we knew she really had a good time with happy, active children. The second thing we asked ourselves was what could Amy say that would disappoint us more than anything and the answer was, “Mom and Dad, I really did understand but no one ever gave me a chance.” We decided right then and there that we would make sure we always gave her chances, asked others to do the same with her, and put together a plan for her, a dream for her, that would make her happy. We knew that we wanted her to have friends. We wanted her community to know her. We knew that if when she died, she lay in that casket with well-stretched muscles, but no friends at her wake, that we would have failed her. So, we began to put together an educational plan that we hoped would work. When she turned three, she spent three days a week in a special needs preschool program and two mornings a week in a “regular” preschool. At four, she spent two days in the special needs program and three in the “regular” preschool. By kindergarten, she went full time to regular school. When she was getting ready to enter elementary school, I was asked to address the faculty. I pretty much told them what our dream was for Amy, told them the questions we had asked ourselves to determine our plan, and asked them to remember she was a child first and a child with many medical and developmental challenges second. We asked them to give Amy a chance. The early school years were easier because they do so many hands on activities. Amy’s team would take each unit of study and put together tactile, auditory, visual, and other related activities for each unit. We found that the kids this age were curious about Amy and most were very willing to help her. Amy got more birthday invitations than any other kid in class early on. Middle school was a bit more challenging with so much lecture material. In high school, we did not worry so much about academic classes as much as classes that would stimulate and engage Amy. She very much enjoyed Creative Cooking, Fashions, Pottery, Computer class, Band, Chorus, and Phototech classes. Because she grew up with these classmates, they always seemed comfortable with her. She was in the school fashion show last year, has attended all the senior events (senior breakfasts, skip day, etc), so prom was a mere extension of her involvement. As developmentally delayed as she is (and people need to know that Amy is definitely on the lower end of the scale as far as AS kids go), we were able to make it work. She has a team at school that truly cares about her as a person. We are hoping next year, post graduation, that she will volunteer three days a week (with her nurse) at our local elementary school. The other two days she will attend swim therapy, tie into the local Association for Retarded Citizens, go to our respite company adult activities like pottery, yoga, cooking classes and such. She will also have different field trips and weekly lunches with her boyfriend Kyle. It is not a “typical” plan but something we feel will work well for Amy.

Now, please do not think I am proposing this as the best solution for every child. Each family knows what is best for their child. For Amy and our family, this has been the best plan. Two of Amy’s healthy friends are attending college, majoring in education with a special education concentration. They tell me that growing up with Amy has influenced their own plans for the future. So, for me, I feel that Amy’s inclusion has been successful not only for her, but for her peers as well.
Sorry to have rambled. I just wanted to let some of the younger parents know how we put Amy’s plan into place. Have a dream for your child. Ask people to give your child a chance. I still believe that even the most developmentally delayed children can have very rewarding lives if we give them a little help.
Again, thanks for all your kind comments on how beautiful Amy looked on Friday night!
Maryellen Costa (NH, husband Gerry, Tim age 20, Amy 19, Ricky 17, Laurie 15, and Joe 10)

My Current Medical Condition/Seizures/Meds
I am enjoying the best health I’ve had in years after a major jaw surgery in February. I have maybe 2 small seizures a day and 1 hard tonic/clonic seizure every 2 weeks. I am on Lamictal 150mg BID and Clorazepate 5.63mg BID for my seizures. We use Diatstat if one of my seizures lasts too long.

My Favorite Things Are:
I love smooches and hugs from my family, my friends at school, music, movies, my computer, swim therapy, and Disney World!

My Least Favorite Things Are:
I hate the rain on my face, cold weather and cold foods, having my teeth brushed, and having my face washed.

Toys That I Find Stimulating and Learn From Are:
My Powerbook G3 Laptop computers (switch activated), my switch activated tape player, Furby.

Therapies I Receive:
I receive PT 3 time/week at school, OT 2 times/week, speech therapy 2 times/week, augmentative communication 2 times/week, swim therapy 2 times/week, and vision therapy once/week.

I Currently Attend This School/Daycare:
I am in the 7th grade at Pelham Memorial school. I have a nurse with me and am fully included at grade level, though my work load is adapted to meet my IEP goals.

Goals I Am Working Towards:
My goal for every day is to drink in the world, eat life’s desserts for my main course, and to clothe myself in the love and affection of my family and friends. Oh yeah, I guess I could work toward more consistent switch use with my computer, too. *smile*

A Typical Day for Me Includes:
I get up at 6 and am off to school by 7:30. I get my therapies, hang with my friends, do my school work, do some cooking most days, and man the school store along with some of my classmates. I get home around 2 and watch some television, listen to music or take a walk. I get some range of motion, spend time with my nurse some days, and do an hour’s worth of homework with my laptop. I hit the tub and am off to bed by 9.

Something Else I’d Like To Add:
My mother says I am special for many reasons. While society may look at me as being “imperfect”, she says I will do something no one else she knows will ever do. I will live my life with no sin. I guess that’s as perfect as perfect gets. Years ago, we were so concerned about how many seizures I had, how much PT and OT I got. Now we look for things that can just make me happy, things that make me smile. I gotta tell ya…Life is pretty darn good these days.