why we talk – part two

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have soapbox – will travel

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Two years ago, I had the honor of speaking at the kick-off to the Greater Boston Walk Now for Autism Speaks. I will never forget that night. There was an energy in the room that, even two years later, I still can’t begin to describe. It spilled into dozens of conversations that I had throughout the course of the evening – conversations with parents, politicians, donors, doctors, walk volunteers, Autism Speaks personnel, teamsters, corporate sponsors, aunts, uncles, grandparents – even a famous television anchorman who I am now proud to call a friend, though not remotely because of what he does, but who he is.

But of all the conversations that followed my speech that night, there is one that has stayed with me like none of the others. It crawled into my heart and has served to doggedly remind me that each of us who has the capacity to reach out and tell our stories – in whatever capacity we can, and whenever we can – must.

A mother had approached me as the evening was winding down. She walked over with her nine year-old son, who she quickly explained had been diagnosed the prior year. She had looked at me through tears and said, “I thought I was alone. I’ve never heard anyone else talk about what we go through.”

Since I couldn’t possibly think of what to say, I’d hugged her.

I’d written about the rest of our conversation in a post back in September of 2008.

She’d gone on to say that she felt badly that her son had been a bit ‘out of control’ (her words) while I was speaking. First of all, I assured her, I hadn’t noticed. Secondly, I reminded her that she was in the right place. “For heaven’s sake, my dear, no one but no one is going to judge your lovely son in THIS room.”

But there was more. And this is what has haunted me ever since that night.

“My husband,” she said out of nowhere, “He left us. He said this ..,” and she tilted her head nearly imperceptibly toward her son, who was feverishly flapping his hands, “was all my fault.”

The saliva in my mouth suddenly turned bitter. My voice was barely my own as I said forcefully, harshly, “Tell me you don’t believe that.”

I was angry. I was angry at the coward who laid blame and ran and I was angry at her for believing him.

“Tell me you don’t believe that,” I said again. It was all I could do not to take her by the shoulders and shake her.

She was crying. “He was really sick when he was a baby and I, I didn’t know and I didn’t…” Her voice was swallowed whole by a sob. She looked at me helplessly. Guiltily.

“None of this is your fault,” I told her. “You listen to me and you believe me. NONE OF THIS IS YOUR FAULT. You look at this beautiful boy of yours and you tell me that believing any of that nonsense will do him any good.”

We talked a while longer and eventually left the woman and her son talking with the doctor who had presented earlier in the evening.

Luau and I talked about her on the way home. Periodically one of us will still say, “I hope that woman’s OK.”

But I have not been able to stop thinking about her. Every day she seeps into my consciousness.

Well, my dears, it’s two years later. And guess who I saw at this year’s kick-off? Guess who came up to me this year grinning, with a son whose smile was bigger than hers?

“I had to find you tonight,” she said. “I needed to thank you.”

She told me that my words two years ago had been a turning point for her and her son. That she’d found help. That her son was thriving. That it still wasn’t easy, but that they were happy. That it was different now.

I was at a loss for words. Again.

So we hugged. Cause that’s what we do for each other. (If there’s one thing that this community knows, it’s that you don’t need words to have love.)

No one should feel as alone as that mom had.

No one should feel as alone as this mom did.

For the mom at the kick-off, it took one story. One person saying, “We live there too.” Just one. And everything was different.

Our stories – our lives are often dramatically different from one another. But they almost always share just enough similar thread to bind us together and make us feel less isolated.

Tell YOUR story.

Please.

You never know who might be listening.

38 thoughts on “why we talk – part two

  1. Breathtaking. Thank you for continuing to urge us all to do this. It’s amazing what you learn when you share your story…it seems more often than not, I hear about someone else’s experiences with autism or special needs. This happened at the hairdresser the other day, when I was explaining about my son and that I wanted him to watch my daughter get a haircut to kind of “desensitize” him to the process. The woman cutting my daughter’s hair ended up talking about her little boy with hearing loss and encouraging me. It was awesome! My one question is – is it right to always share? If we’re at the park and my son is kind of just blending in with the kids (which will happen until they decide to have a conversation with him; he’s just 2 1/2 still but there are some pretty clear social/language delays). I feel better just being honest, particularly if parents are right there, but I don’t always want to be labeling him or always explaining for him right off the bat. But maybe I’m approaching this wrong? I’d love to hear your thoughts.

    • I can’t fathom that there’s a ‘right’ or ‘wrong’ way to do any of this. Every situation is so different – just as different as our kids are from one another.

      All we can do is listen to our gut, watch our kids, and take the opportunities for genuine connection when they arise.

      In no way do I mean to suggest that we should be hanging a sign around our kids’ necks. I’m just hoping that little by little, one conversation at a time, we can work past the stigma until our kids are well … just kids.

  2. and crying again. This is exactly why my friend and I started our support group. We both felt so alone, and lo and behold so did the 15 other women who are now part of the group. No one judges, we can all talk safely, and we all belong. We now rely on each other for the strength to do things we were afraid to do before (like play dates!). And most importantly, we tell each other that none of this is our fault – just like you did for that mother.

    I believe we all have that one person that shows us the path to acceptance, and that mom was so lucky that person was you.
    Alysia

      • Thank you. I am glad too. This post inspired me to register for this year’s Boston walk when I wasn’t planning on it. You helped me realize we all need to tell our stories when we are ready. And now I’m ready.

  3. There may often be no need for words to have love, but your words are so often filled with such love that I can feel it. Right through my computer screen! xo

  4. Thank-you for sharing your heart. Thank-you for writing your thoughts and feelings so eloquently. Thank-you for taking care of the collective us. xoxoxo!
    S~

  5. That was a beautiful story, Sweetheart. Sometimes it only takes one to not feel alone. You, however, get to so many.

    Love you,
    Mom

  6. I need to find some sort of support group PRONTO! I feel alone very alone, I feel the only other person who gets it is my sister who lives with us (Dad does not get it he thinks there will be a “miracle” one day and all will be good in the world). I need to find people to talk to,cry to when it all gets too much to bear. So I am off to find some wonderful group of people who “get” my life! Thank you Jess you always have a way to get my butt moving!

    • Sue – while you work on finding that ‘real-life’ group, know you’ve got a host of people – the ‘collective us’ as Sheila so beautifully put it – who are here, and who get it. Every damn bit of it.

      And hey, if you can’t find it, CREATE it. I guarantee you’re not alone.

      Good luck!

  7. You have been given this gift. It’s not only the compassion and understanding and love, but the ability to write/speak/share with the world. I don’t even remember now how I found your blog but I’m so grateful every day that I did find it. Thank you from all of ‘us’ who are no longer alone.

  8. I am so happy to hear she’s doing well!

    Last night, I found out that an acquaintance committed suicide. It was a shock. She was the bubbly sort that helped everyone. You’d never know there was a problem.

    And no one did.

    Why I’m telling you this is – well, I’m still in shock – but I’m also chiming in here that yes, we do need to talk, and especially as parents and loved ones of our special needs kids, we need the support.

    Depression, guilt -these issues are pervasive in our community, all because it’s still such a mystery, a stigma (for some), something “wrong”…the more we speak, the less stigmatized it becomes.

  9. Oh, I am CRYING at the gift you gave her, and the gift that she could hear your words. Sometimes, the words don’t get through, but they did that day. Thank God. I will keep this post in mind as I go about my day, like I do so many others. XO Redheadmomma

  10. I will never forget that speech… and I’ve sent the link to it to many people… and I’ve watched it myself so many times. I’ll never forget how, without really knowing you well at all, I just sensed that “this woman is special and she can help others.” I hadn’t felt that so simply before – usually lots of time and consideration goes into choosing speakers!! But I just KNEW. And, honey, you prove my senses right ALL THE TIME. xoxo

    • Aw, Mel. And I will never forget that you were the one who put that microphone in my hand that night, despite the fact that I was terrified. My knees shook and I felt desperately unqualified to speak. But you said, ‘just tell your story’.

      I learned that day that the words don’t have to be perfect or the delivery polished – it’s the story that matters.

      Best part? You brought a box of tissues to the lectern. 😉

  11. i remember you that night, jess. you were, as always, amazing.

    on this exciting day when the MA governor signs the autism insurance legislation we know it’s because people like you (and this mother at the kick-off) dared to tell their story. i’m grateful for you and this courageous community that shows such love and support.

  12. Drama,

    You’re right! Depression is pervasive everywhere. We all have to be careful to listen to what our friends and acquaintances are saying and feeling. I think so many of you are doing that extremely well, and that, of course, totally includes you.

    Love,
    Carrie

  13. It’s the stories that change public opinion, that inspire the legislators to make real and effective change. Good for you for doing that, and how amazing that you got such wonderful closure with this woman!

  14. Pingback: The path of a storyteller… « Autism Village

  15. I witnessed your first kick-off Jess and your speech was just amazing. The room that night was alive–I agree. This year’s kick off had a similar vibe–perhaps it is the magic of the Escadrille combined with a great group of people. It really feels that we can make a difference–maybe not cure autism–but we can support each other and keep hope alive.

    My son is 9 and severely affected. The one thing I have seen time and time again is that people are more understanding and caring when you share your story. Those stares in the grocery store are not always people judging you for being a “bad parent”.

    Case in point–my family took a trip to Florida this year and on the way back we got “bumped up” to first class b/c of my husband’s frequent flier points. We came on the plane like gangbusters and proceeded to rearrange the entire first class section to accommodate my son. He spent 2 hrs jumping and singing and eating every cookie in sight. As we got up to deplane we stood uncomfortably in the aisle trying to hide from the fellow passengers who our son had “entertained” for 2 hrs. Several of them commented on how we had our hands full–and then we told them our son had autism. I think 4 different passengers shared who they knew/loved with autism too. We left with a smile and so did our son (I think the flight attendant slipped him a few more cookies…)

    Bottom line–keep sharing, keep educating, keep running the marathon–no one is alone in this.

  16. Diaryofamom-I’d love to talk to you…but have seemed to have lost your email address…can you please shoot me one? I need some advice. Thanks!

  17. You are truly an angel on Earth. You have been MY personal angel more than once. Tell me, how can I even begin to thank someone whom I’ve never even met? You are my hero Miss Jess!

  18. You know I don’t even have time to be reading here and yet … I am. I don’t even have time to be commenting here and yet… I am. Because YOU ARE SO RIGHT! The more we share, the better WE are. Yes, US! We parents, we moms, we citizens, we educators, we daughters … It’s not only for our children, but especially for them. And it grabs us all and lifts us up so that we become intuitive … yes absolutely tuned in with what people, ALL PEOPLE, need. Acceptance. And loads of love.

    Oh and p.s.? Jess … there is NO such thing as an inappropriate hug. Well, except between supervisor and employee, but you know what I mean. Apparently, I’m a hugger.

  19. Yesterday afternoon, I had a random lovely weekday off from work and I went and got a pedicure 🙂 As I was checking out, a woman (probably in her early 40s) came in with her mother (probably in her late 60s). The woman told the girls in the shop that her mother would like a manicure, sat her down in the chair and said, ‘ok mom, I’ll be back in an hour’. She left the shop and then came right back in, and said to the girl checking me out – “Oh, my mother doesn’t talk, she had a stroke, I just wanted you to know.” I turned to her and said something like “Oh, I’m sorry to hear that, it’s so nice that you’ve taken her to get her nails done – how fun.” She turned to me and said “I just wanted them to know she didn’t talk. I didn’t want them to think she was retarded or something.”

    My face flushed, a million thoughts went into my head, and none of them came out. The woman left, and I think I was left standing there with my mouth open and literally a tear in my eye. The woman’s mother was looking in our direction and had clearly heard the entire conversation. I felt sad for everyone at that moment. I was mad I didn’t say anything to that woman, but then again, what would I have said in that moment?

    I did turn to the girl who was checking me out and would be giving the manicure and said “I’m sure that lovely woman knows how to communicate with you, you’ll just have to figure out how.”

    The whole convesation is still bothering me today. I’ve replayed it and now know what I might have said to the daughter. It somehow seemed appropriate to share here. I have to believe that telling our stories can help so many people, even a kind older woman getting a manicure on a random Wednesday afternoon.

  20. I love reading the articles and posts that parents provide, telling their own individual stories of their struggles and triumphs in dealing with Autism. You guys give me the much needed encouragement to forge forward and be the best Mother I can be to my 4 year old son with Autism. Initially, as I began to go through this journey I felt alone and often times even felt this was all my fault, that somehow, someway I had failed. As I read through the articles, I realize their are parents out there facing the same things I’m going through and that there is a whole wonderful community ready to offer guidance and support. I love reading your stories and I love how much we’re encourage to begin telling them to everyone, everywhere. I love the acceptance you all provide and I’m proud to be apart of this loving community. God Bless each and everyone of you!

  21. I love this site! It is so helpful to just know others understand what you are going through.
    I am raising my 4 y/o grandson whom I’ve had custody of since he was 8 weeks old. He was diagnosed this year, but I must say I suspected autism for a couple of years. His Neuropsychologist held off on the diagnosis due to his young age, but we did get him into the state program for early intervention due to lack of speech.

    I must admit that there are many challenges like getting OT, ST and PT (My ins would not cover the therapies for autism) Which is crazy because I am a nurse and work for a hospital! I have been successful in getting on a medicaid program for the disabled child at home. However, I’m still very frustrated as the wheels turn slow and he is growing fast! I feel that every day that goes by without the therapy he needs is a lost opportunity.

    Added to this, in the process of all my research on autism, I am 100% convinced that my son (the father of my grandson) is autistic! I was 18 when I had him and there were problems at delivery. I went home a week later without him and he remained for 2 weeks. When I got him home it didn’t take long before I realized he did not like to be held…ever! I assumed it was my failure as a mother and was heartbroken. As he grew he was angry and I could not figure out why. He would tear his room up and throw tantrums unlike anything I’d ever seen. He was 5 before he was potty trained. He was in speech therapy all throughout school. I cried – actually sobbed when the realization hit me. My son was NEVER diagnosed and did not receive what he needed. I also believe on some level I failed him. If I’d only known and had the resources for him that I have for my grandson.

    All that to say that I’m like a mother bear when it comes to my little one and what he needs. I have fought tooth and nail to get what he needs from the school system, to get the medicaid to help with the therapies and I will continue to do so for what ever else he needs. Luckily, my son is living independently and that makes me so proud of him! He does need a lot of guidance and help from my husband and I, but he is happy.

    I’m currently looking into options that will allow me to stay home with my little one so I can more easily get him to therapies and be more involved with his school. I also am looking into ways I can use my nursing degree to help benefit children with autism. I want to be an advocate for these kids and their families! I know there are so many that are falling through the cracks just like my son did and I was young and believed what I was being told and don’t know who to contact.

    My career has allowed me the knowledge to fight this time around. I had no idea how to do this 25 years ago and no one to show me. I want to be able to help other parents navigate this arduous system. It’s no easier, but it can be done with perseverance and patience and big dose of tenacity!

  22. I just found out my 8year old son has aspergers & adhd & now they are telling me my yungest son age 6 may have it as well. i`m trying to learn all that i can but i stil feel lost. i have some of my family envolved but i wish i knew more.i`m not so good with computers but i`m trying. I live & breath for my beutifull boy`s & wish more people would understand.

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