That's what comes to mind lately when I think about the autism community (or communities) as it all feels very divided to me and always has. And as usual, I feel very much in the middle.
Autism activists are divided on whether autism is good or bad (and in reality in can be both). Autism is a spectrum. As a parent whose child has been all over the spectrum, I can see why people think of autism as something negative and I can also see the positives. Trust me, when my child was nonverbal and banged his head on the wall constantly, I couldn't see how autism could possibly be anything BUT negative. I can also see how damaging those thoughts can be to an individual who has autism. Now that my son has grown up a little, I can really see how autism can be a positive. I can see how the ability to focus intensely on one subject can be a positive. I can see how his amazing memory is a positive. I can see how his abilities on a computer are a positive. However, when he was 2, the negatives were so overwhelming that the positives were not able to show through. I think this is where the group Autism Speaks is at right now.
As parents, we are divided on the causes of autism (personally...I'm not at a point in my life where I want to make this my focus. I have my own personal feelings, but I'm not willing to spend my time or energy on this issue.) My son is here. He has autism. Knowing why he has autism does not change anything for him or for me. Maybe that's selfish, but I have to spend my time and energy on making certain that he has a good life and the ability to be as self-sufficient as possible. Which brings me to the next thing that nobody can agree on...how to get there. Do we use PECS or signs for a language delay? ABA, RDI or floortime? Specific carbohydrate diet or gluten and casein free diet? Do we avoid processed foods and dyes or do we do no special diet at all? Do we put him or her in a self-contained classroom or is inclusion best? It's enough to make your head spin. And in reality these are ALL THE RIGHT CHOICES FOR SOMEBODY. None of these are "good" or "bad". They are simply options and it's up to us parents and the professionals we choose to bring into our child's life to decide how to use these options. There is no point in fighting over which options are best. Everyone is different.
I feel the same way about all this fighting within autism groups. After seeing lots of videos on youtube by both Autism Speaks and the many groups opposed to Autism Speaks, I want to challenge all of us to stop fighting amongst one another. Let's find all the things we agree on and try to work together. Working against one another only makes us defensive. We want people to accept our kids and ourselves for who we are, but we aren't always willing to do that for other people, are we? Can those with high functioning autism and/or Asperger's try to understand just a little why some parents of nonverbal kids consider autism to be a villain? Can parents with kids who struggle with language, motor control, social skills and what feels like everything try for just a minute to understand why making autism the villain hurts adults who have autism? I've said this for years: You cannot separate autism from the individual, so when you make autism out to be a negative, you are harming the very person you are trying to help!
So, this is my plea for today...I'd like to see us all work towards acceptance. I'd like funding available for families to use in a way they believe best for their child, whether that be a special diet, ABA, RDI, speech therapy, occupational therapy, etc. I'd like parents to make their own informed decisions about vaccines, but at the same time, I'd like the vaccine debate to be tabled until there is actually some concrete evidence. This is something that should be a personal decision based on personal medical and family history. Again...they aren't "good" or "bad", as someone who has had a vaccine reaction myself, I know that they can actually be both.
We don't have to agree on why autism rates are going up or even whether they are actually going up or not, we just need to work together to make the world a better, more accepting place for everyone. We have the power to change things by being more accepting and tolerant of other's differing views as parents and activists. We can try...right?
Tuesday, October 6, 2009
Monday, October 5, 2009
How Having A Child With Autism Has Changed Me
A study came out today that put autism in the headlines again with a new rate of 1:100 and it made me stop and think about how autism has changed me over the years.
The first thing that comes to mind is that having a child with autism has taught me how to be understanding. I can remember before I had kids when I saw a child acting up in a restaurant and I would instantly judge the parents. I still have lots of opinions on parenting, but I am much more likely to think of possible reasons the child is struggling and if there is anything I can do to help, rather than to simply decide the kid has terrible parents. Instead of an eye roll, I'm more likely to give an understanding smile to a parent whose child is obviously having a hard time.
Autism has also taught me how to let go of my preconceived notions of who and what my own child would be and/or do. Don't get me wrong, I still have high expectations for him but these are tempered with the knowledge that things that come so easy for some are a struggle for him and will take a lot more work, creativity (on my part) and perseverence. When trying to teach him anything whether that be math or behavior, there are no "last resorts"...if he doesn't get something we have to keep trying until we find a way. So I guess you could say, autism has also taught me not to give up. It's taught me how to use my own (and his) strengths to compensate for weaknesses. It's taught me how to think outside the box. I never thought I was a creative or especially a crafty type but one day I found myself creating "french fries" out of yellow foam and putting the ABC's on them, placing them in a McDonald's fry box in order to use what he liked (McDonald's fries) to teach him something he needed to learn (the alphabet)...which brings me to something else I learned...
I learned how to appreciate everything and celebrate all the little victories in life. While most parents expect that their child will talk, learn to use the toilet, ride a bike and learn multiplication, these things were never a given. Yes these are milestones that all parents are happy to see their child achieve but there is a distinct difference in not knowing WHEN your child will achieve them and not knowing IF your child will. We've been lucky. Dallas has reached all of these milestones thanks to his own determination and a lot of hard working people who have helped us along the way, which leads to the next thing I've learned...
I have learned to not give over all my power as a parent to a "professional" whether that professional is a doctor, a therapist or a teacher. I'm still the parent and I still know my child the best. I have learned to work with these professionals so that together we can use our combined knowledge and work together. They may have the knowledge of different methods we can try, but I know my son and know which ones we should try first and which ones we shouldn't try at all. I am very appreciative of all the hard working professionals who have been happy to work WITH us. Dallas has reaped the rewards, that's for sure.
I've also learned to appreciate the differences in other people and now know that everyone has something to offer. I've learned to go past what people present on the outside and take the time to learn who they really are. In the process, I've let go of some people I thought would be in my life forever and opened up my mind and my heart to new people.
How autism hasn't been able to change me (or my son) is that it has not given us a "thick skin". We both still hurt when he is excluded. When he sees his cousins spend the day (or night) with grandma or aunts and uncles and he's never invited to do the same, it bothers him (and me). When he sees his peers have sleepovers with their friends and he's not invited, it bothers him (and me). When all my friends went the way of the wind when Dallas was diagnosed, it hurt and when the people who hurt you the most constantly tell you that you "need to develop a thick skin if you're going to have a kid with autism", that hurts too. So the last thing autism has taught me is that sometimes we have to create our own family. We have to find those who accept us, who want to be with us, who appreciate what we have to offer and who don't hurt us. Thankfully I'm learning that there are a lot of people out there who do just that!
The first thing that comes to mind is that having a child with autism has taught me how to be understanding. I can remember before I had kids when I saw a child acting up in a restaurant and I would instantly judge the parents. I still have lots of opinions on parenting, but I am much more likely to think of possible reasons the child is struggling and if there is anything I can do to help, rather than to simply decide the kid has terrible parents. Instead of an eye roll, I'm more likely to give an understanding smile to a parent whose child is obviously having a hard time.
Autism has also taught me how to let go of my preconceived notions of who and what my own child would be and/or do. Don't get me wrong, I still have high expectations for him but these are tempered with the knowledge that things that come so easy for some are a struggle for him and will take a lot more work, creativity (on my part) and perseverence. When trying to teach him anything whether that be math or behavior, there are no "last resorts"...if he doesn't get something we have to keep trying until we find a way. So I guess you could say, autism has also taught me not to give up. It's taught me how to use my own (and his) strengths to compensate for weaknesses. It's taught me how to think outside the box. I never thought I was a creative or especially a crafty type but one day I found myself creating "french fries" out of yellow foam and putting the ABC's on them, placing them in a McDonald's fry box in order to use what he liked (McDonald's fries) to teach him something he needed to learn (the alphabet)...which brings me to something else I learned...
I learned how to appreciate everything and celebrate all the little victories in life. While most parents expect that their child will talk, learn to use the toilet, ride a bike and learn multiplication, these things were never a given. Yes these are milestones that all parents are happy to see their child achieve but there is a distinct difference in not knowing WHEN your child will achieve them and not knowing IF your child will. We've been lucky. Dallas has reached all of these milestones thanks to his own determination and a lot of hard working people who have helped us along the way, which leads to the next thing I've learned...
I have learned to not give over all my power as a parent to a "professional" whether that professional is a doctor, a therapist or a teacher. I'm still the parent and I still know my child the best. I have learned to work with these professionals so that together we can use our combined knowledge and work together. They may have the knowledge of different methods we can try, but I know my son and know which ones we should try first and which ones we shouldn't try at all. I am very appreciative of all the hard working professionals who have been happy to work WITH us. Dallas has reaped the rewards, that's for sure.
I've also learned to appreciate the differences in other people and now know that everyone has something to offer. I've learned to go past what people present on the outside and take the time to learn who they really are. In the process, I've let go of some people I thought would be in my life forever and opened up my mind and my heart to new people.
How autism hasn't been able to change me (or my son) is that it has not given us a "thick skin". We both still hurt when he is excluded. When he sees his cousins spend the day (or night) with grandma or aunts and uncles and he's never invited to do the same, it bothers him (and me). When he sees his peers have sleepovers with their friends and he's not invited, it bothers him (and me). When all my friends went the way of the wind when Dallas was diagnosed, it hurt and when the people who hurt you the most constantly tell you that you "need to develop a thick skin if you're going to have a kid with autism", that hurts too. So the last thing autism has taught me is that sometimes we have to create our own family. We have to find those who accept us, who want to be with us, who appreciate what we have to offer and who don't hurt us. Thankfully I'm learning that there are a lot of people out there who do just that!
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