This week has been…hard. Very very hard.
My kids were supposed to start school this past Tuesday. But Hurricane Irene left her mark here, knocking out power to most of my town and dropping trees and power lines across roads and bridges. The buses simply could not get through, and so school was canceled on Tuesday. And Wednesday. And Thursday.
Each day we shuffled around our planned “getting ready for the first day of school” activities, and each afternoon the call came in that school was put off for another day.
I hit the parenting wall. Hard.
My kids were becoming difficult. Lewis had become quite aggressive and impossible to manage around his brothers. Howie’s stimming and crashing and smashing was hitting intolerable levels. Gerry was at the end of his rope with his brothers. And no amount of extra beach trips and surprise playdates made any of it easier or better.
I was done. I had lost control of everything in the house. I had lost control of my ability to function.
Enter in my lifelines. My autism mom friends.
I’m lucky enough to have met some incredible women over these past few years. Some of them I’ve met through my son’s school, some I’ve met through reading their blogs. Some I just know through Facebook and Twitter. Each and every one of them is just…
incredible.
Beyond nice. Instantly supportive. Every visit and conversation is easy. Like we’ve been friends for years.
I know how cliche it sounds. But it is so very true.
They just “get it” without explanation or judgement. I don’t have to pretend to be some strong “I-can-handle-anything” mother with them.
I can send an e-mail saying “I’m losing it. Sitting at my desk trying not to cry.” They don’t think I’m on the verge of a nervous breakdown. They say “That was me last week.”
I can write that “the hurricane is wreaking havoc on all three of my kids and I don’t know what to do.” They don’t wonder why the weather is affecting my children. They say “it’s happening in my house too.”
I can send an instant message that “I’m struggling. Losing myself and my family in the process.” They don’t question my parenting ability. They offer to babysit, tell me to set up a date night and help me feel human again. And when I tell them how bad it really is, they say “I can handle it. You need the break.”
I can ask for their support and strength as “I’m trying not to cancel our babysitter for the night because my kids are so volatile I’m afraid of putting our friend in the position of policing them all night.” They don’t even ask what is going on with my kids. They tell me “You need this night out. Get out of your house or I will kick your a**.”
And I can post on my Facebook page that I’m looking for ideas to entertain my kids now that we’re delayed for a week, and a mom invites me to their swim club. To get out for the day. Without ever having met me or my children before.
They were the ones to lift me up and pull me out of the rabbit hole.
Without these women, I wouldn’t be the advocate that I am today for my children – all three of them. Without them, I wouldn’t be the parent that I am today.
Without them, I’m not even sure I would have made it out of bed this week.
They not only get my kids, but they “get” me.
A while ago, my friend Jess wrote a post called “Autism Street” about how different autism can be from one house to another. She reminded us that what happens behind the closed doors in my house on autism street is very different than what is behind my neighbors’ closed doors. And with that, we need to support each other no matter what.
It’s a phrase I’ve used often since in an attempt to describe an “in real life” version of this virtual autism community. Online, we are instantly there for one another without judgement or qualification. My parenting struggles in my house are just as valid as the parenting struggles faced by another. Our children are all different and on different “places” on the spectrum, but as a group we celebrate our huge successes and cry at the bittersweet.
We are in this together.
In real life, I can imagine this “place” where we watch each other’s kids with no questions asked. A park where our kids could roam free and be free without the “look”. A gazebo where the siblings could hang together, swapping tunes on their iPods and gaining strength from each other. A place where the virtual “hugs” could become real and the doors are always open. A welcoming village for anyone who “gets” our kids – autism parent or not.
A bridge over that troubled water for us all.
This week will be better for my house on autism street. It has to be. Then it will be my turn to open my doors for my neighbors, to give back what they have given to me.
“When you’re weary
Feeling small
When tears are in your eyes
I will dry them all
I’m on your side
When times get rough
And friends just can’t be found
Like a bridge over troubled water
I will lay me down
Like a bridge over troubled water
I will lay me down” – Bridge Over Troubled Water by Paul Simon
**********
As hard hit as my town was by Hurricane Irene, it does not compare to the devastation that occurred in my home state of Vermont. Please click HERE to donate to the Vermont Food Bank’s disaster relief and help those in need.
Thank you.
September 2, 2011 at 11:49 pm
People like you, and friends that understand, change everything. Here’s to a better next week—for you and everyone!
September 2, 2011 at 11:52 pm
You captured beautifully, every feeling I have about our online autism community. I would be lost without all of you
September 3, 2011 at 12:20 am
Xoxo we are all in this together.
September 3, 2011 at 2:59 am
So glad the autie mums community was able to help you through this week, they do the same for me here in Ireland x
September 3, 2011 at 7:47 am
I am so glad you are doing better. Even happier you have such a great support system! I think that is absolutely invaluable. I am slowly getting to know the autie moms in my area and hope to have a relationship like that with some of them eventually. I could use the support!
September 3, 2011 at 8:39 am
I know it’s been a rough week for you and I’m so proud of the way you have handled it. You are (and have always been for me) an inspiration!
September 3, 2011 at 8:48 am
I wish we didn’t have to live on this street, but the neighbors are the best around. xo
September 3, 2011 at 9:10 am
So many others said what I would. So I will simply add a “ditto” and AMEN. So glad you are feeling recharged. I wish we didn’t live on the same street, too, but I’m mighty glad to know the neighbors…they’re all pretty amazing an pitch in at a moment’s notice.
September 3, 2011 at 9:33 am
I’m going to have to download that song now. Thanks!
September 3, 2011 at 10:26 am
I have not yet gotten to know any other autism mommies in person. But the virtual support is the next best thing! I love the street analogy, and especially the gazebo for the siblings to hang out it…my daughter could really use that sometimes!
September 3, 2011 at 10:34 am
I love you.
September 3, 2011 at 10:56 am
I will order and send over the rosel petals that you can throw down when the bus pulls up and school gets under way!
Hang in there my friend and as I was told by my therapist once “it will not always be like this, there will actually be better minutes, days and weeks..”
September 3, 2011 at 11:13 am
I once tried to explain the power of the community that I have found through facebook and through my blog. When I was fumbling around for the right words the person that I was talking to said, “It is like you are sending up a prayer.” I was like, “Yes! that is it” Our struggles, our tears, our triumphs all shared with the stroke of the keyboard. A prayers sent out and received with open hands. Please know that you have opened your hands for my prayers. I am so, so, sorry that it has been such a hard, hard, hanging by a thread week. Please know I have been there. Not with a hurricane but two years ago with the snow storms that covered us for two weeks. I pray that this weekend bring peace and calmness to your home. My prayers is that someone will also come to your home and clean out that Mac and Cheese microwave for you. Now that would be an answer to prayer. Thinking of you!!
September 3, 2011 at 12:40 pm
A new reader delurking to say that I’m sorry for the rough week and hope the next falls into the routine that’s been missing. I would have been lost w/o my autism mom friends — it’s an amazing community!
September 3, 2011 at 2:11 pm
So glad that you eventually got through Hurricane Irene in both your area and your home. The online Autism Community is amazing and I am very glad that you found some excellent support there That’s what it’s all about somewhere to share and to give and receive support.
Hope next week goes well for you all
xx Jazzy
September 3, 2011 at 4:20 pm
I thought I’d read everything of Jess’s but somehow missed that post in my “home from BlogHer, camp is done and now I’ve got the kids 24/7″ haze. It’s so, so true.
I am so sorry it’s been so rough for you and so glad you got the support you needed. I wish we lived closer, were actual and not just virtual neighbors on autism street, because I SO needed to hang out with you and your family this past week as the last gasp of summer “vacation” is kicking my ass BIG time (I wrote my own post about it last Wednesday called “Not my Best”).
Big hugs, and thanks for writing this beautiful, honest, real post about our lives.
September 5, 2011 at 2:21 pm
yes, so very thankful for our community.
and your friendship is a gift.
xo
September 6, 2011 at 11:13 am
It is so wonderful that you have a community to turn to, and they support you so well! I soooo get the feeling of being DONE. Hopefully, relief comes soon!