But, He is so cute!

Until he isn't. You see, I was blessed with a beautiful child. A disabled, forever child, who happens to be extremely handsome. At 4 years old, Carter can charm his way to the top. People stare, not because of his wheelchair or his screaming. They don't stare at the enormous baby who can't walk or speak. Sure, he is unusual and of course it crosses their minds because people are curious, but I know it's because this 4 year old with big doe eyes and bright teal glasses caught their eye. His ability to be so damn cute, completely overrides his disabilities sometimes. I find others remarking, "Well, at least he is cute..", as if that saves our day. Yea, that makes up for how hard his little life, and our lives are now and are going to continue to be. Thank the lord.

Don't get me wrong. I know he is beautiful, and I am sure every other parent thinks the same of their child. My issue is what happens to him when he is no longer cute? That is the reality. He is growing up and this little boy will become a man. A man who will more than likely still need everything in his life done for him. A man who will need diapers, softened food, onesies, a feeding tube...a man that will need to be shaved, who will continue to have growing pains and go through puberty and not have the words to tell me what he needs. A man. It's easy for others now, while he is a child, to overlook his disabilities. The world is kinder to those who are cute.

Right now, his headstrong nature and frustration is deemed a communication barrier. As he ages, is he just going to be labeled "difficult"? Right now, his teachers and therapists and nurses work to understand him, his wants and his needs. As he ages, is he just going to be tossed aside because no one will want to deal with him? Carter's communication barrier will not suddenly be overcome because of the use of a communication device. It will not suddenly be overcome because he now understands, and can respond, to a few words or short commands. It is lifelong. It is something we will always be working with.

I find myself constantly pointing out Carter's cognitive abilities so while we acknowledge, yea he is adorable, but look how smart he is. It seems that even people who are constantly in his life still do not understand so how can I expect people who do not know him to understand? If you don't try, you won't see his funny personality or be able to engage in his interactions. If all that is focused on, is how cute he is, you won't see his amazing soul. I can post pictures and videos on Facebook, I can continue to share our life and information about GRIN, but as far reaching as it might be, it will never be enough.

He is already treated differently at his tender age of 4. I can't imagine how he may be treated, especially when I am not around, when he is 15 or 20...or 30 or 60. It is hard for those who are older with NO disabilities, to get people to care. What about an older person who has multiple disabilities? I try not to think so far down the road. I try very hard to focus on the child I have now, but knowing that Casey and I will be his caregivers until we die, it's almost impossible not to keep this top of mind. I just wonder what the world will think when he is no longer cute Carter. Until then, I will fight and advocate for him as best I can. That is, until he can advocate for himself.