I’m a pretty private person.
I know that seems weird to say, considering I write this blog now, but in the non-virtual world I’m pretty good at keeping things about me to myself, only sharing with close family and a few select friends.
This need for privacy is certainly something I learned from my parents, and especially my father. Despite his very public political life, our family life was kept behind closed doors. Nothing illustrated this more than when he got sick with pancreatic cancer. Inside our house, we were a mess, scrambling to get him whatever help we could while attempting to understand what his absence would mean. Outside our house, however, we all circled the wagons at my father’s insistence. When asked how he was doing, our family mantra became “Yup, yup, we’re doing ok.”
But we weren’t doing ok.
By denying this fact to the rest of the world – specifically our friends and neighbors – we were denying ourselves the ability to get outside help and support. We closed ourselves off from the shoulders to cry on, the hands to hold when things were rough, or the understanding voice on the other end of the phone saying that they had been there too.
Fast forward to last year when we started to really notice that things were a little different with Howie. As I’ve said before we knew for a while that something was going on with him, but when he started preschool we could really see that he needed help. My privacy instincts kicked in immediately, and while we were waiting to get him evaluated I kept our whole story to myself, with the exception again of a few family members and close friends. Living in a small town, it would be easy for one person to innocently share with one friend what we were going through, and then that friend would tell another, until the game of “Telephone” had been played to the point that Howie’s story would become something not even close to the truth. I was already uncomfortable enough with the accommodations we had made to his schedule (increasing his school time from three to five mornings, having him enter school before the other kids, picking him up at a different door) – I didn’t need everyone in town questioning why we were getting seemingly special treatment.
Once we got Howie’s PDD-NOS diagnosis, however, I knew in my heart it was time to let it out. Educationally, we didn’t really have a choice. His autism diagnosis led us to a full day/full year preschool program and the need for an IEP. We were now entering the school through a different door and picking up at a different time – clearly something noticed by all the parents who we had previously waited with before school started.
I first let down my guard with three other mothers who were dropping off their kids for the full day special program. Introducing myself to them was not easy for me, but they were so warm and welcoming and understanding it was hard not to think that I should share more. Howie and I attended a gymnastics class in town just for kids on the spectrum and I wrote an essay about it for Autism Speaks. When it was published on their website, our story was out.
Following that post, Tim and I spent a lot of time talking about how I had “outed” Howie to the world as being on the spectrum, without him having a say in it at all. As I’ve written before, we came to the conclusion that this is who he is, and his behavior or quirks or whatever we may call it are explained by his ASD and we didn’t label him for life with something that wasn’t him.
But for me it was more than just that. Sharing his story was the only way for me to get the help and support I needed to get through the day. It was the only way I could feel that I was not alone. Sharing led me to three new wonderful friends, to starting our local support group, and of course, to writing this blog.
I am still figuring out when to break through that wall of privacy around me. I have a constant debate in my head when we meet new people about how much to share with them. Do I tell the mom at the park when she’s staring at Howie when he’s making his noises? The neighbor who calls to ask about a playdate? The swim instructor who can’t understand why Howie won’t put his feet down on the dock? Considering the stigma that is still attached to the word “autism”, I don’t want him shunned from playgroups or activities, yet I want others to know why he behaves the way he does.
When asked by casual acquaintances and extended family members how things are going, I still find myself answering “yup, yup, we’re doing ok”, even when we’re not. But I’m getting there. Because I know that the more I share what’s going on in our house, the more others will understand Howie and spectrum disorders in general. And because I know I need those shoulders to cry on and those understanding voices telling me that I’m not alone.
“It doesn’t matter what they say
In the jealous games people play
Our lips are sealed
Pay no mind to what they say
It doesn’t matter anyway
Our lips are sealed” – Our Lips are Sealed by The Go-Go’s
July 5, 2010 at 5:26 pm
Hi there. I’ve just come across your blog via discussion on mom bloggers. Although it’s a totally unrelated topic over on MB I find we have something in common! I have one child a 10 yo boy diagnosed with PDD_NOS! he is now fully integrated into mainstream education and I now longer feel the need to divulge his “label” to all and sundry! I totally get how you feel about this though.
Initially I kept his original diagnosis of ASD to myself but then, due to his behaviours and the fact he started in a special school, I felt obliged to reveal his “label”. Then I found I couldn’t stop!!
I’ve discussed labels extensively on a previous blogpost of mine and I honestly believe there are times when teachers/instructors really need to know. Besides, I got to the stage where I simply couldn’t bear the fact that others viwed my child as being “bold”…I’d much rather give them his “label” then that.
I guess everyone knows what works best for their families though 🙂
xx Jazzy
July 5, 2010 at 7:40 pm
Hi! Thanks for sharing 🙂 I think you’re right – all families have to decide what’s best for them, but I really like your approach! I look forward to reading your post on labels.
July 5, 2010 at 7:26 pm
Alysia,
Thanks for sharing your story. I too have a special needs child and have found that the best thing about sharing my story is finding out that I’m not alone in this. I’ve signed up for email notices of your posts. I hope you’ll stop by and follow me too. Some of the activites may even help your son. Pamela
http://www.musicforspecialkids.com/
July 5, 2010 at 7:52 pm
I just checked out your site – it’s fantastic! I love your ideas, and I look forward to using some of them with all my kids 🙂 Thanks for finding me.
July 6, 2010 at 8:24 am
Hi Alysia.
Thank you for your comment on my labels post. I did publish it but for some reason it’s not showing up. I’m glad you could find it…I didn’t want to be presumptuous and include a link to it on my first comment on your blog!
here’s another post, in the same vein, that I wrote that you may also find interesting:
http://jazzygals-steppingout.blogspot.com/2010/04/young-autistic-stagestruck-and-excluded.html
I look forward to reading more of your posts! xx jazzy
July 6, 2010 at 1:51 pm
I say let it out!! Think about how nice it is when you are talking to a friend and they say “oh my that is our house too”. We were having dinner at a friend’s house the other night and we were laughing about how the family “sit down at the table” dinner doesn’t happen at our house at all. My girlfriend smiled and said “that makes me feel so much better to know that’s it not just us”
I really think that you and Howie can really help spread the word that Autism is not some “weird” thing but rather something that effects a lot of folks that don’t realize there are such great tools out there and wonderful groups.
July 6, 2010 at 2:32 pm
watch out, my friend – I may starting “letting it out” more!!! 🙂 But you are right. I think as moms we keep a lot of stuff private because we don’t want people to judge us, but in fact everyone else is worried about the same thing!! Thanks for the nice words as always!!
July 6, 2010 at 7:30 pm
I;m so glad your lips aren’t sealed in cyberspace b/c you have a wonderful blog here that many of us can relate to. Thank you!
I am passing along the Sunshine award to you. http://traininghappyhearts.blogspot.com/2010/07/sunshine-award.html
July 6, 2010 at 11:59 pm
Wow! Thank you thank you both for the kind words and award!! I have learned so much from you – it’s a wonderful honor coming from you.
July 6, 2010 at 7:32 pm
Hello Alysia,
I’ll never forget when my middle son’s math teacher pulled me to the side to talk to me about his learning habits. “You will always be Axel’s advocate,” he said meaning that it would be up to me to let Axel’s future teachers know that Axel may seem as though he is not interested or listening but on the contrary he is absorbing all of the information and if they are patient enough he will surprise them with his genius.
I truly believe that the more you put the information out there about Howie, the more the doors will open for you and give you the information that you will need to help support him in every aspect of his life.
So glad to have you on board at my Aspiring Writer’s Group at MBC! I look forward to more of your insights.
July 6, 2010 at 11:58 pm
Thank you for your smart words! You are so right, thanks for the encouragement. I am excited to be part of your group, and I look forward to checking out more on your blog!
July 7, 2010 at 9:07 am
Great post! I struggle with this a lot as well. Part of me just cringes at the idea of people pitying us, but I also do not want the stigma placed on Danny. I already have had people make major (and false) assumptions about him because of the autism, and the funny thing is, it has been moms of kids with autism who made those assumptions.
There was a great post on this recently on Welcome to Normal:
http://www.welcome-to-normal.com/2010/06/do-ask-do-tell-how-to-shift-autism-into.html
July 7, 2010 at 1:15 pm
Thanks Patty! It’s a constant battle for me as well. I read Caitlin’s post right after I wrote mine (before I posted it) – she’s right on, of course. The hard part is figuring out how to get it mainstream…
July 7, 2010 at 11:22 am
You have me in tears. That is a great post. I think every mother can relate to the fierce protectiveness that we have for our children. We want any pain directed at them directed at us and the thought of our babies not being accepted or treated the same as everyone else because of an ignorance bred out of lack of information is heartbreaking. I admire your courage already in writing this post and sharing your privacy. I always think that it is one thing when we share about ourselves but when we share about them it is truly like exposing your heart.
You writing is beautifully honest and flowing with emotion.
July 7, 2010 at 1:13 pm
wow – thank you!
July 7, 2010 at 3:11 pm
I have a 7 year old daughter who has Autism. I was going to follow your blog but you don’t have a follow button.
July 7, 2010 at 3:23 pm
Hi! Thanks for the nice e-mail and I look forward to reading your site. You can follow me a few ways – one by subscribing (at the top right of the home page under “e-mail subscriptions”), secondly through networked blogs if you’re on Facebook (click on the network blog link on the homepage), and thirdly by getting an RSS feed (under RSS-links). If you have google reader, I think you can follow my blog that way too, even though it’s on wordpress. Somehow I was able to do that, but I can’t remember how. If your site is on wordpress, you can choose to follow my blog through your dashboard (click on follow at the top of the page).
Hope that helps! I look forward to connecting with you more!
July 8, 2010 at 6:28 pm
Hi Alysia, you have gone through quite a lot! Thank you for sharing openly through this post. I have a couple friends whose kids have Autism. I’d like to forward your blog url to them, if you don’t mind.
You have a new follower from MBC Simply Follow! Come visit with me at http://jinnialow.com
Hope you have a great day!
July 9, 2010 at 5:06 pm
Hi! Yes, feel free to pass it on! Thank you! I look forward to checking out your site as well!
July 28, 2010 at 5:50 pm
Thank you for your post- you’re right, of course. It is a genuine quandry. Of course, the mother was as understanding and supportive as I could have wished for. It is my issue with bringing it up rather than how she takes the information. Now fingers crossed for that play date- it already feels so much like work!
http://spectrummymummy.wordpress.com
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