by Cynthia Fernstaedt Martinez
Celebrations are often held in honor of milestones, events of importance and something we want to publicly announce or share with others. Learning just what to celebrate and how has been part of our journey with my son Marco.
Celebrations without Meaning
A schoolteacher of Marco’s who we were having great difficulty with would often say to me, “I think it is important to celebrate Marco.” While the thought was appropriate, the way it was implemented was meaningless. One instance was when Marco was receiving a paper award for behaving appropriately. The other students were recognized and given their awards during a class period Marco didn’t attend due to health issues and shortened days. This teacher wanted the principal to come into her class and present the award to him. While I had no problem with the gesture, for my son it was not appropriate.
Marco, as part of his mitochondrial disorder, is blind, hearing impaired and knew none of the students in his class. Sure enough, he came home the day the award was presented, told me his aide had put it in his backpack, and said, “I don’t know why they bothered. Of course I don’t get bad behavior marks, I’m in a wheelchair, can’t see what is going on around me and struggle to hear what anyone is saying.” Inadequate services, IEP violations and teachers who did not understand had all left him frustrated and isolated, and this award only added to that. The paper and gesture had no significance or meaning.
Celebrations with Meaning
Marco’s Celebration Wall
Marco, due to tremors and fine coordination issues, has struggled and struggled to learn many skills. When we learned he had progressive vision loss at the age of six, I began consciously working on independent living skills with him at home. For six years (with some OT help) we have practiced and practiced properly holding a spoon, fork, and stirring and spreading items on crackers. When he held the spoon properly and was actually able to get food from it, we celebrated! Yes, the celebration meant a night of eating anything he could with the spoon, but it was a significant accomplishment for him and the gesture fit.
In September, Marco began participating in a local chapter of My Team Triumph. This program enables those who use wheelchairs to participate in races and triathlons. The participant in the wheelchair is the Captain and those who push him are the Angels. As with most races/marathons, often t-shirts are given, along with medals of participation. While Marco has a number of these on display, he will tell anyone and everyone the greatest meaning is in his name placards signed by his Angels at the end of each race. Why? His Angels are his legs, his eyes and his ears. By them pushing him, describing the scenery and people around him, and distinguishing the sounds for him, they celebrate who he is the entire route. The cheers, high fives, spoken congratulations and him being able to share his description of what happened, along with how it felt and the Angel interaction at the end of the race, provide for a celebration better than any party!
The teacher was correct, it is important to celebrate Marco, but for who he is rather than defining him by his disabilities and health issues. What I have learned (and am still learning) is that celebrations need to be for what matters to him and on his terms.