I've been thinking off and on about how people are with Carter, or react to him. I find that I have at times been disappointed, saddened, and even surprised. Since Carter's diagnosis, I've made new friends with similar challenges and have found those friendships to be strong because of our shared experiences. These people have been supportive in a way that I need and am extremely grateful for. I ran into this quote on Pinterest and loved it:
"I am a special needs parent. I have very special needs. I need you to be there for me. I need you to be there for my family. I need you not to pity my child. I need you to teach your children acceptance. I need you to listen when I need to talk. I need you to not judge me. I need you to understand why I don't always call. I need you to be my friend. I am a special needs parent. I have special needs."
What does bug and hurt me though, is when people choose to ignore Carter or act uncomfortable around him. People in my own extended family do this. I would much rather them ask me how to interact with him, or at least attempt to say hi. I understand playing with him seems daunting, but he is such a happy kid. I always tell people- if you get up close to his face and say hi and talk with him, he will hug you and smile. He likes to play like other kids, and he does react. I find it hurtful and disappointing that even though he's been here for almost 4 years, people still know nothing about him. Carter will get up on his knees which is pretty tall, since he can't walk, and he'll go up to someone to touch their face or person, and smiles to indicate 'hello' or 'I want to be picked up' or for you to 'play with me'. There have been times those people have been uncomfortable and ignored him or even moved away. How hurtful, for a child like Carter to reach out with his limited capabilities, and have someone reject him. Just because they are uncomfortable with him. Yes, he can be a little rough sometimes and grab hair, but he isn't trying to hurt anyone.
The times I have been surprised and pleased is when random people ask me how to interact with him and then do so. When people say 'hi Carter' and are sweet with him. When random people on Facebook write me often to encourage me- that comment on pictures of Carter and say how handsome he is and special- that try to be involved. Those are the people I truly love and cherish. If you love my son, I will love you even more back. A big thank you to all those that have picked him up, wrestled with him (dad), sang songs to him (mom and Mary), and more.
My point is this- if you are uncomfortable with someone in your life that may have special needs, just ask the parent how to interact with them. They will appreciate your effort. I am trying to grow thicker skin, but when it's present not in strangers but my own family- it is hard to get over. Carter's teacher said it best in her report of him 'Carter is a happy boy. He loves his musical toys. He can activate simple switches. Carter does give a clear signal when he wants an activity to be repeated. Carter is a special little boy with potential if given a chance.'