Last night I spent some time in the company of some amazing women. All mothers, all with school age kids under the age of 10, all of whom “get it”.
About a month ago, a friend and I had the idea to start a small support group. The original idea was for mothers or fathers of kids who are on the spectrum, and with the help of the school district, we reached out to parents to see if anyone wanted to meet, just to talk. Our first meeting last month was so nice that we decided to meet again. And last night, our group expanded. Friends brought friends who had kids on IEPs. Friends brought friends who had kids with diagnoses but couldn’t get IEPs. And as the sangria and wine and spinach dip flowed, we sat and just talked. Some of us were meeting for the first time. Without having to say it, we all knew we were in a safe place to share our feelings, vent our frustrations, and tell our stories. When one person talked, the whole room nodded along. Because we all “get it”.
This is what we “get”:
We “get” that no matter how many books or papers we read about our kids’ issues, we always feel like we’re reinventing the wheel and going it alone.
We “get” that even with the best of intentions, sometimes our husbands/family/friends just can’t understand what how challenging our daily lives can be.
We “get” that it’s frustrating to have to be our children’s best and sometimes only advocate, and wonder why the teachers/administrators can’t see the struggles that our kids have, and we wonder why it’s so hard sometimes to get them the help them need.
We “get” that sometimes you have to do whatever you can just to get through the day (or night), and if that means having your kid sleep in your bed or do laps outside the house at 9pm, then so be it. We know to pick the one or two or three most important battles of the day and deal with the rest.
We “get” that you would move heaven and earth to do anything to help your kid, but financially and logistically it’s not always possible. And we understand the guilt that comes with feeling like you’re never doing enough.
We “get” that sometimes the stress is too much to handle alone – the worries and wonder that keep us awake at night long after our kids have come into our beds at 2am. Will our kids talk? Will they succeed in school? Will they have friends? Will they have jobs, go to college, have a family of their own?
We “get” that we all have a fear of the playground, birthday parties, and family get togethers. But we know that we have to let go of that fear, surround ourselves with people who care and understand our kids, and get ourselves out there.
And we “get” that some of us couldn’t meet past 10:30pm, since that’s about the time when our kids start their night waking routine, and that in many cases we’re the only ones who can comfort them back to sleep.
As the sangria dried up and the last of the spinach dip was eaten, I asked everyone if they wanted to meet again, maybe skipping a month until August because summer can get so busy. The general consensus was we didn’t want to wait that long. We wanted – and maybe needed – to meet again in July. As one mother put it, “I might get a little crazy if I go that long without meeting with my girls!” Couldn’t have said it better myself.
“Lean on me, when you’re not strong
And I’ll be your friend
I’ll help you carry on
For it won’t be long
‘Til I’m gonna need
Somebody to lean on” – Lean On Me by Bill Withers.
June 12, 2010 at 12:37 pm
I just love this. It is so right on! Love to read these posts..!
June 12, 2010 at 2:33 pm
aaaah, thanks Kris
June 12, 2010 at 12:55 pm
June 12, 2010 at 10:00 pm
That’s so great that you have gotten a group together. A mom in my town has started a group as well and I went to the first meeting. I felt really uncomfortable there, because it was so totally negative, without any ideas on how to make things better. I am hoping the meetings can change a bit to add more hope and be a bit more positive. I have nothing against venting–we all need to at times, but I would like the group to get beyond that and actually be supportive. Not sure how to help with that…
June 12, 2010 at 10:13 pm
It’s interesting you say that – I can see that happening very easily. Somehow we had a nice balance between the venting and the support. There was a lot of “I’ve been there and this is what I’ve done” and “How do you deal when such-and-such happens?” Maybe it’s as simple as bringing a topic to discuss and asking the others for advice? In my humble opinion a support group is supposed to be just that, right? Support? I hope your next meeting is better!
June 14, 2010 at 8:08 am
Thanks for sharing your story. I’m from SPD network too and I’ve added you to my blog list.
June 25, 2010 at 1:15 pm
You’re dead on! I so enjoyed reading your “get-it” phrases. I live in a really small, rural area….so I’ll live “virtually” through your blog. Thanks so much for sharing.
Tracy in NC
mom to Luke, Jake and Zeke (11 years old, autistic/non-verbal)
June 25, 2010 at 1:45 pm
I definitely ‘get it!’
June 25, 2010 at 1:47 pm
Thanks for sharing. It’s absolutely true. Doesn’t matter what kind of issue we deal with unless you live it you don’t “get” it.
June 25, 2010 at 3:11 pm
Wonderful post and I love the use of “defy gravity”. My two sons, ages 6 and 4, (one with Asperger’s) love to dance to Defying Gravity from Wicked. They have no idea how much I feel that those two little words define our entire lives and how my son fights with all of his might every day just to defy gravity. LOVE it.
June 25, 2010 at 3:59 pm
Great post…you make too many good points to mention – though I especially like that you point out the reality, which is that try as they might, other people have no idea how challenging our lives can truly be. I am trying to start a group in my city, and you have given me some great things to think about here. Truly loved your insight!
June 25, 2010 at 4:48 pm
[...] I began thinking today about the difference in how a victim and a victor would handle an unexpected struggle that is thrown their way. I read a blog today, by an amazing mother who has started a support group in her town for ASD and special needs mothers. She wrote an amazing post that I feel perfectly encapsulates what most ASD parents want people to “get”. See her post here: http://trydefyinggravity.wordpress.com/2010/06/12/lean-on-me/ [...]
June 25, 2010 at 6:02 pm
This just made me cry. I found myself shouting “YES!” to every bullet point. *sigh* What a wonderful feeling that you are NOT alone.
June 25, 2010 at 11:08 pm
Love it!! Thank you for sharing!
June 26, 2010 at 6:04 am
You can’t do it without some kind of support, somebody to talk to. We are really lucky to have my son in a school where they give us that support.He’s going to be in 3rd grade this year, and has had the same teachers for the past 2 years- and they are awsome! The whole faculty from the ‘office ladies’(my fave’s!), to all the therapists, the librarian, even the cafeteria and custodians-EVERYBODY- supports and cares about ,and knows all the kids in our school. It gives me great peace of mind that I dont have to worry about him when he’s there, and that we’re so lucky to have so many wonderful people to help my son be the best he can be!
June 26, 2010 at 9:02 am
As I read this I found myself nodding my head and thinking “YES!”. I am fortunate to have Mommy friends that help keep me sane because they “get it” ~ without them, I don’t know what I would do!
Kudos to you and your friend for starting this group!!
June 26, 2010 at 9:48 am
I think its great that you have other mothers to talk to. I dont know of any group around here like that. How do you go about finding a group meeting? I have a 13 year old autisic son. Its just me and my husband we have only each other. We have older children in their 30′s and one 19yrs old in college.If anyone knows of any kind of groups or meetings we would be more then happy to here frm you Thank-you Lisa Mango
June 26, 2010 at 10:27 pm
we went through my son’s school – it was the best way we found to connect with people we didn’t know in town, and then our friends told friends, and so on…our local autism resource center has support groups too, so that might be a good place to start as well. good luck!
June 26, 2010 at 10:30 pm
WOW! thanks everyone for all the nice words! Writing this all down and hearing from everyone has helped me know that I’m not alone as well. Sometimes all you need is just that one friend who understands and is there anytime of day or night – even virtually! Thank you everyone for commenting.
June 27, 2010 at 7:56 am
Wow, I didn’t know, and so appreciate the words and what you are doing for not only your boys but for women who need love and understanding. I do not have children with autism, but have children with special needs. I have four children, two of which are adopted. It is so fustrating to have people “get” what we go through. ADHD, Fetal alcohol sydrome, learning issues, sensory and social. The words can just go on and on. Thank you for doing what you are, we are in the same boat with different oars trying to go up the river
Good luck to you, and now that i know about your blog looking forward to reading it all. Robyn
June 27, 2010 at 10:16 pm
thanks Robyn! I didn’t know about your kids, but I am honored to be in the same boat with you. You are an amazing mother, and I love reading your FB stuff. Thanks for feeling comfortable enough to share with me, and I hope we can continue to share ideas and successes together.
November 24, 2010 at 7:13 am
[...] My support group, who without even knowing it have changed my [...]
November 24, 2010 at 10:03 pm
Wow Alysia! I had never read this post before!
I only found it by clicking on your link in your latest post!
What a wonderful idea…all of us need more people who “get it” in our lives.
Brilliant!
November 29, 2010 at 1:56 pm
Thank you. We all need at least one person we can turn to. I’m lucky to have this whole group – in person and with you online!
March 15, 2011 at 2:03 pm
[...] introduced me to some of the most amazing people I’ve ever met. People who I want to have as friends. People who understand and accept us [...]
March 27, 2011 at 4:26 pm
Amazing!! I just posted something similar. I want a group like that for regular meet-ups. It would be a sanity-saver, for sure!
Stopping by from Blog Gems. =)
March 27, 2011 at 6:28 pm
Hi! I’m in from Blog Gems. My cousin is starting a support group in her area. Any advice/encouragement that I can pass along?
April 1, 2011 at 8:34 am
[...] Superhero Moms. Moms who wear their capes twenty-four hours a day, seven days a week. They are people I know in my real everyday “see you at the supermarket” life. [...]
June 3, 2011 at 10:36 am
[...] a lot about having a “village” – friends with kids with special needs who “get it“. They walk in my shoes every day and they understand the pain and frustration and [...]
January 5, 2012 at 5:27 pm
I want to start a group!
January 5, 2012 at 5:42 pm
You should! It was easy really. We called our school psychologist and told her we were starting the group, and let her give out our number to people she thought would benefit. Plus we knew a few. Our list has about 20 people on it, and each month about 10-15 come. We have no agenda except to give each other a safe place to talk, laugh and cry. A year and a half later, it’s the best thing I ever did.