Our son, J, played soccer when he was younger. He started when he was five and stopped after eighth grade. There were games we wanted to see. And we did. We took Brandon with us to most of the games. We were getting fresh air, Brandon could jump around all he wanted, he could make his noises and J was having fun. Win win, right? Not always.
Not everyone is accustomed to seeing a kiddo like Brandon. He makes weird noises, he jumps and flaps his arms, and he tends to get too close to people. We were at one game sitting on the sidelines in our chairs, and Brandon was sitting on a blanket. He was being himself. A child who was about three years old noticed Brandon and walked towards us. He was about ten feet from us when his mother swooped in, grabbed him up, and actually said to stay away from “that kid”. Brandon was 8 years old at the time.
I was livid. I yelled to her that my son has autism and it certainly isn’t contagious. She didn’t even turn around. Then I cried. Brandon may not be able to talk well, but he can hear. He has feelings and those feelings can be hurt. He also was not doing anything that was harmful to himself or others. He was just being himself, trying to keep calm around all the people he didn’t know. Soccer games can get quite loud…cheering, yelling, etc. These things bother Brandon, so if he needs to jump a little to let out the anxiety, jump away. We were outside, for heavens sake.
I was also angry because she said that in front of her son. Her toddler, who will learn from her. And, in my opinion, she had just taught her child that my son is to be feared. How dare her!!
How do we go about raising awareness? How do we get the message across that our children are not to be feared? There is so much information out there about autism. There are so many resources. And yet, people will still say that the child having a meltdown in the grocery store just needs a good spanking.
How do we fix this?
I hate saying this, but it is almost easier now that Brandon is grown. A 20 year old who jumps around, makes strange noises, and who can’t communicate well is seen by others as disabled. We do not get as many of the “looks” now as we did when he was younger. That makes my heart hurt. My child was seen as a “problem” when he was little and we would get the nasty stares and comments. Now that he is older, he is seen as “disabled” and “different”, or “difficult” and we occasionally are given a look of pity. I sometimes want shout “We don’t need your pity, we need your understanding”.
So, what can we do about this? How can we help to change the perceptions of those who don’t see our son as a sweet, wonderful human being, who happens to have autism?
We want people to ask us questions. We want to engage in conversations about our family. Autism does affect our lives. Every day. That isn’t a bad thing. It just is what it is. But we are so much more than a family living with autism. We like to laugh. We like to watch movies. We like to use the grill when spring finally rolls around. We like to watch J during marching band. We like to talk with A about his knowledge of history. We listen to music. We visit with family. We have friends over to play games. Pretty normal, right?
Out and About
When we are out with Brandon, we talk to him. We talk about the different foods in the grocery store, we talk about the animals at PetSmart and Cabela’s, we talk about what we are going to do next. Yes, occasionally we have to remind him to not be so loud and to stay with us, but we talk to him. Much the same as I talk to my friend, Jessica, when we are shopping at Michael’s. We introduce ourselves to new neighbors and educate them on what they might see/hear from our son while he is running around the back yard.
Like anyone else, we frequent the same local gas stations, grocery stores, and quick shops. When the person behind us in line sees the cashier interacting with our son, it helps educate that one person. And maybe that person goes home and says to those around him/her how we saw a person with autism at the store and how cool it was that the cashier knew him.
We spread awareness and information every day about our son. Through talking with people, posting stuff on Facebook, and answering questions friends and family may have. Because who would not want to know my son. He is awesome! His behaviors can be challenging, but HE is awesome.