Yesterday we had a family friends birthday party to attend. It was for a little girl who was turning 4 years old. We all got ready for the day and headed out. When we got there we all single filed in only to realize how much space we actually take in someone else's home. Gav man and I settled in with a seat in kitchen with his chair pulled up along side mine while my husband socialized with the other dads and the other kids all played in the other room. Every now and then the birthday girl would make her rounds explaining to the party that she was the guest of honor and that all those presents in the corner were hers.
Every few times she made it to Gavin she would say "how old is your big baby?," "you are such a cute baby," "don't slobber on my toys baby Gavin." I let it go a few times and waited until she wasn't distracted and explained to her and the other kids that Gavin wasn't a baby. He was actually 2 1/2. He was a big boy too. She looked at me very confused and asked "well why is he in this?," and "why can't he get out and play with us?" Though it still breaks my heart that Gavin can't just jump out of his chair and run around with the others like Gabe can, I simply explained that every person can do different things. I simply told her Gavin's body doesn't work as well as hers does. Every child and adult is different, we all might look the same but we all have different abilities. Some of us can sing, some of us can paint, some of us can drive cars, and some of us can walk. After this she quickly scurried away to round with the other guests. After our talk she kept coming back offering Gavin new toys saying "You are such a big boy aren't you Gavin?" and "You are big and tall!"
I got a few looks of pity from a couple parents and a few dodge glances when they looked over towards Gavin because it just frankly makes people uncomfortable to approach me or him like I am parenting an alien. I finally struck up a conversation with one mom who looked completely uncomfortable at first but once found out my twins cloth diaper, have the same pooping in the bath tub issue as her 2 year old son, and honestly have all the same developmental issues, quirks, and developments as her son seemed to relax into a normal conversation. Gavin and Gabe don't use oxygen. They don't have trechs. They don't have feeding tubes. They don't have severe vision issues. They just have problems telling their bodies what to do physically. They have the same mental capacity as any other 2 year old toddling around and jumping off the couch. Only they can't just off the couch, hop on one foot, Gavin can't sit on his own or stand. Gabe trips himself when he tries to run. Gavin is slow to speak but if you give him the chance can say every word and sentence, eloquent Gabe can. They are the same as your toddlers they just need a little extra time.
My kids, family, and friends and their kids have all seen Gavin in a wheelchair or seat of some sort since he was an infant. Questions like this don't often come up when we have gatherings with people we see often. My husband reassured me that there is no right way to explain it to a child and that I did a good job trying to put it in terms that she could understand at 4 but it hasn't left my mind since we left the party. I don't have a go to answer and I know that as we start to do more group activities with the boys with children their own age the question is going to keep coming up. In small town Illinois where there aren't many children in wheelchairs or with servere physical disabilities like Gavin or even mild ones like Gabe, they just don't see it or understand. I suppose it's time for me to hit the web and see how other parents handle this. I have seen plenty of books for children with disabled siblings but my children have never viewed Gavin and Gabe as different. They just are who they are. Never has our now 8 year old ever questioned it aloud and our three year old includes them they Gavin's wheels are just funky looking legs.
They will always be my "big babies" and I am absolutely sure when they are big enough to understand they will tell strangers themselves that they aren't big babies. They're my superheros.