Last year was our family’s first year in the walk. We were still very new to the world of autism. We weren’t even sure if we wanted to participate. We were still reeling from the diagnosis and weren’t sure if we were ready for something as public as the walk. I only knew a few people who had children with autism. I could feel the quizzical and sometimes disapproving looks from others when my son’s behaviors didn’t match their expectations. I wasn’t sure about exposing him so publicly, but as the walk day neared we decided it was important to join the walk.
Before the walk I felt isolated and alone. But when we arrived at the walk I was astounded by the number of people there. As we joined the walkers I was amazed at the cheers for the teams, the love, acceptance and support I felt for the parents, the siblings and especially the person with autism. I was so moved by the acceptance I struggled to hold back tears...several times. I loved feeling engulfed, enveloped and enwrapped in acceptance. It was validating to me as a parent. People understood the struggles and challenges that Debbie and I have and will faced. It was accepting of Itai, for all of the challenges he will face as a sibling who loves and accepts his brother. And of course, it was accepting of Avi for who he is, whatever he is and who he can be.
My only regret about attending last year's walk is that we didn't do more to include others. I saw huge teams gathering around one child with flags and t-shirts and cheers. How amazing for that child, who probably rarely gets recognized and praised to be surrounded, absolutely surrounded, by love. This is why I'm pestering everyone. I love Autism Speaks. I love the support and education they provide. I love the research they are doing and I want to help them achieve these goals, but my real goal is showing Avi that he is not alone. So thank you for joining us, for surrounding him and us.
The most important part of the walk for me was learning that I was not alone. I was surrounded by people who understood and cared. I wanted every parent who was struggling with autism to feel so much love and compassion. I hope that every year is as magical as the first walk we joined.
On a different topic I'm looking for some suggestions. I've been thinking about little Itai. It's not uncommon for the sibling of a child with special needs to feel left out or forgotten. I've been thinking that since the walk will focus a lot of indirect and direct attention on Avi and Itai may feel lost in the shuffle. I would like to start a tradition of an Itai day. Every year on some set day other than his birthday (I haven't picked one yet) where everything is focused on Itai. What kind of things do you think you would like? How can I make sure Itai knows how much we love and respect him? Let me know what you think, I'd appreciate it!
5 comments:
We're looking forward to walking with all of you. I hope we can all help make it the day you're hoping it will be.
Sorry I don't have any specific ideas for Itai day. Maybe just letting him choose an activity (museum, aquarium...) when he is old enough to choose.
I think I need to start getting in walking shape! Anyway, looking forward to the walk and the ambience. Hope it'll be the fun day we expect it to be.
Great idea to do an Itai day! I will give it some thought and if I have any even semi-brilliant ideas I will let you know!
What a wonderful post. Neil and I have never attended the Walk for Autism and we are totally excited to do it this year. As a parent of a child with autism, like you said, so many times you feel alone -- like no one knows what you're going through. But what a wonderful feeling to feel so much love, acceptance and understanding. We are excited to be a part of it.
As far as the Itai day, I've been thinking a little bit about it. I know some people who do little "dates" with their kids and I've always thought it was really cool. Instead of just focusing one day on the specific child, each child gets a "date night" with mom or dad each month (maybe the parents alternate months). They make it a big deal -- put it on the calendar and count down the days, etc. For those few hours during the date, all of the parent's attention is on that specific child and they get to do something fun together -- a bonding moment, and a way for the child to feel extra special. I've always struggled with the fact that Isaac seems to receive less attention than Boston and I am thinking about doing something special with him. Good luck with Itai!
I have never done the autism walk...obviously but I had a similar feeling when doing the Relay for Life with Adam. Before the actual 24 hour relay starts, they have a survivor lap. The survivors and 1 care taker waks the lap and everyone is clapping and whistling for the survivors. I was never his care taker while he had cancer so I feel like I shouldn't be walking but the feeling is so amazing! So I understand how the walk would help you feel supported and not alone.
I don't know what you should do for an Itai day...I don't know him well enough to know what he likes but I'll bet that as he gets a little older, he'll have some great suggestions of what you can do on his special day. Are you doing one this year for him?
Thanks everyone. I guess I didn't write that very clearly. I'm wondering what I can do this year and maybe next year if he isn't able to pick. I'm thinking I'll wait until it's warmer though, it's just no fun out there right now.
Tiffany, the Relay for Life sound awesome. I'm glad that you got to take a lap with him and I think you shouldn't worry about not being his care taker when he was sick, you're his partner now.
Annie, I like the "date" idea. My family used to do something similar when we were growing up. I used to love it, so I might have to implement it. We're excited to have you on the team and we really hope that you can make it for the walk.
Mom, the walk is seriously not long enough for you to need to worry about training for it. I'm pretty sure.
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