Special Needs Living: Announcing Autism
October 29, 2009 at 7:30 AM by Cafe Sheri - Comments (16)
I'm happy to introduce our new column Special Needs Living from CafeMom aurorabunny.
aurorabunny's 3-year old son Brody was diagnosed with classic autism at one year, falling on the severe side of the spectrum in terms of development. At present, Brody is still mostly nonverbal, using a few words, sign language, and PECS (Picture Exchange Communication System) to communicate.
Each week, aurorabunny will be talking about the everyday struggles and triumphs of raising a child with special needs and an invisible disability.
Announcing Autism by aurorabunny
Although I differ from some moms in the sense that I don't mind using the word "autistic" when talking about my son Brody, I never wanted to be the parent who trails behind him, announcing the fact that he has autism to anyone and everyone. But somehow lately, with the combination of him being a little bit older and also being introduced to more social situations, I seem to find myself doing just that. I think I'm finally starting to realize how hard it can be to know what to do or say to others when your child has an "invisible" disability.
Just last week I took Brody in for a doctor's appointment and our normal physician wasn't available, leaving us to make an appointment with a doctor who we had never seen before. After a few minutes of the doctor trying to engage Brody in a conversation (or get him to even look at her), I finally said, "He's autistic, and he's nonverbal." Was that the right thing to do? Maybe in that situation, especially since we were dealing with a doctor who most likely needs to know these things. But is that always the right thing to do?
I feel in a lot of situations that if I don't explain that my son has autism, I run the risk of people thinking that he just has no manners or any number of other assumptions that people probably make. The fact that he doesn't have any language is most likely what makes this so hard for me.
I also sometimes think I should jump on the opportunities to explain autism to other children; my line of thinking being that maybe this will help them to be more tolerant and accepting of Brody and other children who are different. However, I definitely don't want my son to grow up thinking that is name is "Brody has autism."
I'm curious what other moms think...do you explain your child's special needs to others? If your child doesn't have special needs, what would you think of another mom explaining her child's disability to you in a casual situation?
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FILED UNDER: autism, developmental delays
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If cafemom had a "like" option like facebook I would be clicking like right now LOL.
Is there a web site online you can get the "pecs" for free?
Just wanted to say that I am honored to be writing a weekly column about raising a child with special needs! And aidensmomma, that is a good question. We didn't do too much in the way of PECS until Brody started school so most of the materials that we have were given to us by them. I will look into it for you.
Awareness of Autism is increasing and will hopefully make people recognize it easier and not be so judgmental.
It's really hard to get people that are my grandparents age to understand that the child is not misbehaving and to have compassion, that part is driving me nuts. My cousin's beautiful little girl is autistic and nobody but me noticed and accepted it for years! Her parents finally have her in special classes and she's starting to communicate, but they waited almost 6 years to do this! ahh!
Oh Yay! I look forward to reading your weekly columns! =)
I never know who to tell that Brandon has autism either. My luck when I do mention it, it'll be one of those people who "don't believe" in autism or something crazy. I don't want him to get older and have to listen someone tell about how his disablility is "fake." Especially once he can understand more. It's a tough thing to try to figure out.
My 2 year old son sustained a Traumatic Brian Injury and now has developmental delays and such. He can't yet walk or talk but is progressing with every new day. Before I finally received my sons wheelchair we would go places with him in his stroller even grocery shopping. I would get the usual how old is he? Does he walk, talk etc.? And I answer no with no explanation because I don't want to have to go into detail about the whole situation. Either way I was leaving with others judging my parenting. I try not to let it bother me but when little kids ask why my son isn't doing things the way they do or why he isn't eating, I feel it's my duty to enlighten them! As long as he is not being fed(GJ-Tube) at the time my son has an otherwise "invisible" disability as well. Until someone starts talking to him or they expect him to run up to them. He looks "normal." That's the word I don't like. Let me just say I'm excited about your weekly column as well!!! Thank you
As a parent who's child does not have autism....I think it helps LOADS when people are willing to talk about their child's conditions.(Sorry if that isn't the best word). I was once at a birthday party..my son was about 2 yrs old...not sure exactly. And he was playing this bowling game. We had just gotten the pins set up, and had walked to the other end of the room to roll the ball at them. And when we got there, we turned around and a kid of about 7 kicked all of the pins down, screamed (not a happy scream) and started to run away. K...this may make me sound the like bad person, but I was MAD...real mad. 1. my son's game was interrupted...a game that it had taken a bit for us to get set up because he wanted to do it himself. 2. This child kicked it over, with no thought to the person playing the game. 3. No one made this child stop and appologize. (now...these thoughts went through my head in the 3 seconds after the kicking). Out of no where, this frazzled mother, comes running, appologizes profusely, explains that her son has autism, and this is one of the first times they ahve really had him in a large group of people. Great. NOW I understand that there was a reason this boy did what he did, and I could explain to my son that the little boy didn't mean to mess up his game. This meant that there wasn't some snotty little jerk of a kid going around purposely being mean to little kids.
Cont.
And there wasn't a parent (or parents) that were ignoring their child's unruley behavior.
For me...it helps to know WHY something is happening...to have understanding. I can't be 'okay' with the actions of kids that interfere with my child's happiness/wellbeing/etc if all I have to go on is the child's actions.
So in the end, for me, I think it is better if a parent makes other parents aware. (And thinking of your son...let's say our kids (who are the same age) were at a playground together. My son...would be SCREAMING at your child...because he doesnt understand why people won't answer him if he is talking to them. BUT...if I could explain to him that the little boy he is playing with can't talk...then things are certainly going to go much better for BOTH of our boys...make sense?)
First of all, thanks again so much for all the comments! I know that once upon a time I almost felt excluded from the Daily Buzz, especially the toddler section, because it seemed to be all about behaviors and milestones that my child was not anywhere near due to his special needs. When I brought this up CM and the DB team were more than willing to give more attention to special needs interests and they have been fantastic.
And Proudsinglemum...yes what you are saying makes sense. That is why I feel torn on the issue too. I will be honest, I've met moms who will say "I can't believe you call your child autistic and label him in front of others", but those same moms will throw a hissy if someone even looks funny at their child on the playground. I know that people aren't psychic. I can't expect people to just KNOW that my son has autism and his behaviors, however different they may appear sometimes, serve a purpose.
On the other hand he is 3...and who can really explain the behaviors of 3 year olds anyways? ;)
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I have a 10 year old with Autism. He is mostly nonverbal and I too go back and forth with myself on whether I should or need to tell people when we are out in public that he has Autism. Sometimes I think that its none of their business and other times I want them to know that there is a reason he is doing something inappropriate. I think it depends on the situation.
I also don't have a problem using the word Autistic, but I do think there is a stigma attached to the word that other neurological problems don't have.
ajcoons814 Oct. 29, 2009 at 10:11 AM