what i wish i could tell you

~

I feel like I do this a lot. That I tell you that there are so many things that I want to tell you – that I would tell you – if only I had the time. Of course it’s a nifty trick, this. Because by telling you what I wish I had time to tell you, I sneak in telling you. Well, sort of.

It lacks the detail, the perspective, the dare I say – art that I try to inject into my writing. At the very least, it denies us both the beginning, the middle and the end that us structure-craving types really like. But alas, here we are again. Standing at the crossroads of Desperately Overwhelmed and Mama’s House of Cards – and I have no choice but to tell you what I wish I could tell you – straight; no chaser.

So here goes ..

I wish I could tell you about the conversation that I had with Katie in the car the other day on the way to skating. The one where out of absolutely nowhere (or so it seemed at least), she said, “Mama, I really wish you wouldn’t be so hard on yourself. It’s not your fault, you know.” And I wish I could tell you how her words, even hanging there in their contextless vacuum, took my breath and how I had to hold tight to the wheel and make sure not to swerve into the trees.

I want to tell you how I said, “What do you mean, baby? What’s not my fault?” And how she said, “Everything. You can’t be responsible for everything. It can’t all be your fault.” And I want to tell you how it led to an amazing conversation in which I taught her a little about personal responsibility (that there are things that we are responsible for) and she taught me even more about, well … life (and self-preservation) and how she told me that she just didn’t want me to be sad so much and it made me, well, kinda sad.

I wish I could tell you how I told her that she is my greatest teacher and she told me that that’s backwards and how we agreed to a 2/3: 1/3 deal on the teaching and learning front but how I knew I was lying because as much as I teach her, I learn exponentially more.

I wish I could tell you about my friend Alysia’s labor of love – the SenseAbility Gym. Go ahead, click on the link. I’ll still be here when you get back. I wish I could tell you how inspired I was at her fundraiser the other night and how while listening to her talk, I really, truly believed that we – me, you, all of us – can make our dreams for our kids REAL.

I wish I could tell you how proud I was of Katie as she manned the Sensory Education Table at the fundraiser with Alysia’s son, Gerry and how much pride she took in explaining how each of the tools there made a difference in the lives of those with Sensory Processing Disorder.

I wish I could tell you how amazing it was to listen to her yammer on a mile a minute on the way home, telling Luau and me about how she had convinced someone who was waffling to buy a piece of equipment for the gym. How she had said, “Mama, I told them how the hammock swing had changed my sister’s life and how if they bought it for the gym, they could change someone else’s life and then THEY GOT IT, MAMA!” or how I caught sight of her earlier in the night with another couple whom she’d also charmed into buying something saying, “Thank you SO much. You’re doing a really good thing.”

I want to tell you how she sounded so sincere and so mature and how I just wanted to scream, “That’s my kid!”

(And how when Alysia was talking about the gym – about this incredible place that she seeks to create – that she WILL create – I wanted to scream, “That’s my friend!” because I was so damned proud of her too. )

I wish I could beg you to donate because they need $38,000 to open their doors, but once they do they can ultimately be self-sustaining and you’d get to be part of this amazing thing and well, how cool is that?

I wish I could tell you about how hard that night was because for the first time ever, Brooke said, “Me too.” Because she wanted to come and I knew – I knew that we could bring her but it would be torture for her. I want to tell you how I struggled to make the right decision – how I had no idea if there was a right decision.

I want to tell you how she cried and yelled and hit herself in the face. I want to tell you how it all but destroyed me because there is nothing worse than watching your child hurt herself.

I want to tell you how I DID NOT KNOW WHAT TO DO. I want to tell you how I tried to explain that kids weren’t going to be there but how that didn’t make sense because Katie was coming and how ‘she’s working there’ had no meaning. I want to tell you how I knew – I KNEW that it would be awful for her – how I tried to tell her about the crowd and the noise and the full-to-the brim church function room and the total and utter lack of escape. I want to tell you how we debated taking two cars and bringing the iPad and the headphones and how it just didn’t make sense to bring her somewhere so challenging when she could stay home with Julie and do whatever she wanted.

I want to tell you how we finally convinced her that staying behind was the best plan but how I was overwhelmed with guilt. I want to tell you how I asked Luau if we were making the decision that was best for her or easier for us and how in the end I had to admit that it was a little bit of both and how that felt like crap.

I want to tell you how when we were there and the room was hot as hell and filled with wall to wall bodies and there were no chairs and there was no place to hide and Katie looked at me with wide eyes and said, “Thank God we didn’t bring Brooke,” I knew I’d done the right thing but how it still didn’t feel like the right thing at all.

I want to tell you how Brooke didn’t sleep that night. How she melted down in her bed at 11:15 and how she was in the circle – the dreaded God forsaken circle – the circle of “I’m crying because I’m sad. I’m sad because I’m crying.” Rinse. Repeat. Start again. That circle. And I want to tell you how it broke my heart because I knew why. I knew that we had left her behind and THAT was why.

I want to tell you how I brought her into my room with me and how we cuddled into the night – long after Luau had fled to the upstairs bedroom knowing one of us would need to be rested for the day ahead. I want to tell you how I guiltily loved being so close to her and how much I hated the reason why she was there.

I want to tell you how we’d promised we’d go to the fair the next day and how she perseverated on it as she cried. “We will go to the Big E tomorrow,” she said. “I’m crying because I’m sad. I won’t cry at the Big E.”

I want to tell you how she loves fairs. How she lives for roller coasters and fun houses and flumes. I want to tell you how she loves petting sheep and cows and goats and how she interacts with them in a way that makes me see her on a farm. I want to tell you how she sat down next to one of the sheep for a while and curled her fingers into its wool. I want to tell you how calm she was – right there in the middle of the madness of the animals and the people and the fair – how calm she was sitting next to that sheep with her fingers in its wool.

I want to tell you how she loves to eat popcorn – but only the yellow pieces – or how she loves buying Sno-cones she doesn’t eat and lemonades she doesn’t drink. I want to tell you how the Big E is the mother of all fairs and how, after Saturday night nothing would have kept us from the roller coasters and funhouses and cows and sheep and uneaten Sno-cones on Sunday.

I want to tell you how my heart is breaking for Katie. How I’ve been writing these great things about her – about skating and the fundraiser and about being interviewed and golly gee whiz, ain’t it all unicorns and rainbows because I’m trying desperately to do what I told her yesterday morning that she MUST do – to focus on the positives in her life. Because as much as I want to tell you all the rest, I don’t want to tell you about the 4am nightmares and the e-mails to the staff at the middle school and the helplessness that I feel right now in not being able to make things easier for her.

I want to tell you how Kelley Borer, the director of the Autism Speaks Boston Walk, reached out to me to tell me that she wanted to create a tent especially for the newly diagnosed. I want to tell you how she asked what resources I would have wanted back then – what would have been helpful. I want to tell you how it was all I could do to keep it together because, my God, how amazing is that?

I want to tell you how I reached out to friends for their feedback because I’m so far out over my skis right now that I just can’t do even one more thing and how they came through – how they always come through – and how the tent is going to be a thousand kinds of awesome now. I want to tell you how I need YOU to help with one of my big ideas for it. How I asked Kelley to set up a local mentoring program of sorts and she was all for it but how it won’t work without US.

I want to beg you to sign up as a mentor (or a mentee if you’re new in THIS proverbial tent) if you’re even remotely local to Boston. I want to tell you how we’re looking both for parents of kids on the spectrum and autistic teens and adults to sign on to buddy up with the newbies. I want to implore you to contact Kelley at kelley.borer-miller@autismspeaks.org if you’re even a teeny weeny little bit interested in connecting and helping and creating a real, live, in the flesh community (and / or if you can help man the tent for just a few minutes next Sunday, the 30th.)

I want to tell you that the commitment is only what you decide to make it and to say please, please do this because it matters. I want to thank Kelley for reaching out and for so thoughtfully putting this together.

And I want to tell you so much more, but some of it is just too big for this post and some is too small and regardless, it will all have to wait. Because the truth, my friends, is that I’m struggling to make it from one day to the next this month. Because September is hard. And it turns out that September in an election year, when you’ve insisted on being in the mix, is even harder. And when our babies are hurting, well … it’s just hard.

So there it is.

What I wish I could tell you.

If only I had the time.

37 thoughts on “what i wish i could tell you

  1. Kelley is my best friend. My oldest daughter (3.5) is named for her…the same daughter that is in the process of evaluation, with many signs pointing to an autism diagnosis.

    Do anything and everything you can to help Kelley, guys. :) She is one of the miracle workers, and she’s working for my girl…and your girl…and your boys…for all of them. :) Thank you, Jess, for giving Kelley a shout in this space. It made me smile to see her name in my blog reader this morning.

    • she is a thousand kinds of awesome. she pours her heart into what she does and makes such a difference in the lives of our families. she is truly a gift to this community! lots of love and all the best with your kiddo. xo

  2. What I have to tell you: I have to tell you that you are the most incredible friend. That if I could write down the characteristics that make up the perfect friend it would be you. You are funny, smart, fiercely loyal and dedicated and the things that seem like no big deal to you are huge acts of love and friendship to those around you. You have taught me what true friendship means.

    I also have to tell you what everyone said about Katie that night. That so many people asked me who she was and marveled about her poise and her knowledge and her obvious love for her sister. And that every time I went over to her she was smiling and not just because of all the chocolate. Katie taught me how the power of sharing your personal story can change one person’s mind when it comes from the heart.

    And I have to tell you what was happening in my home before that night and the whole weekend. How my middle guy was a dysregulated mess and even when his beloved babysitter showed up he stayed in his own world driving cars in circles….something I hadn’t seen in a long long time. Before then he kept talking about the “FUN-raiser” and wanted to go raise fun. I thought the dysregulation was because of all the people here. But what Brooke is teaching me now is that he wanted to be a part of it, but couldn’t. And that perhaps the idea of “not leaving out but not torturing either” is harder now when the leaving out is actual what causes the pain.

    And we know now that our next event needs to be for our families, because that is what the gym is all about. Supporting each other together.

    You see, once again your whole family is teaching me. I am forever grateful for the gifts that your family brings to mine.

    And now breathe. Take the advice of your daughter and know you can’t do it all. Let those of us who you have taught so well pick up the line. Because we will.

  3. With all that you wrote and feel and do, I feel the MOST I can do for you, dear Jess, is pray. Praying for wisdom, discernment and strength for you and yours. Comforting, supportive hugs from down Jersey way, gail

  4. When I got to the end of your post I realized I needed to breathe. So I figure you need to breathe even more. Thank you for being real, and not perfect, freeing the rest of us to be real, too.

  5. I’m taking a page out of Brooke’s handbook, starting today: in the midst of all of that emotion — the sadness of the previous night and the happiness and busy-ness of being at the fair — she turned it off and sat down and had a moment of complete peace. I love it and I’m doing it. (What a sweet picture of her next to that little sheep!)

    I also completely love the idea of a resource for the newly-diagnosed!! I don’t live near Boston, but I wonder if I could make that happen around here?

  6. I don’t have all of the pressure from outside sources and obligations that you do, but I can completely relate to that sense of overwhelm you are experiencing…. because, well, we are moms and we want our kids to be content and confident and to know how amazing they are…and when a component of that isn’t happening, it is a heavy load to bear.

    Hugs. Breathe. Let people help you…it is the least we can do.

  7. You continue to inspire and to motivate me. 13.1 miles – Done! Donation to the gym – done! Can’t wait to get a membership and bring my boys! Email to Kelley – sent! I certainly can be a mentor to a newly diagnosed family. What a GREAT idea. Now take some time to breathe – do you have any idea how much you do? I don’t know how you do it. By the way – thank you for all that you have done and continue to do to make a difference in the Autism community.

  8. sending you prayers and wishes for deep breaths, sound sleep, laughter, and some of those small, perfect moments that are superficially meaningless but so meaningful in your heart. those are the kind of moments that hearten me, so i’m sending you wishes for them.

    i also want to tell you that i’m a 35 year old without kids. i work with middle schoolers every day at a school for kids with learning differences. and 1. middle schoolers, with their family’s support, are ALWAYS okay in the end, although their struggles are so painful to watch and 2. as someone who works with middle schoolers, i pay close attention to your posts and try to integrate what i glean to be your message and 3. as someone who doesn’t have children but hopes for them one day, i pay very close attention to your thoughts on parenting/mothering. i learn from you and i file away your lessons for future use. you are a wonderful, loving, doting mom. if a stranger can see this, it must be true. i would like to be like you when i grow up. :) i don’t mean to oversimplify your struggles; i just want you to know that your life makes a difference to many.

  9. What I wish I could tell you, and I will, is the absolute difference you have made in my life! I feel like you help me each and every day, your words are more powerful then you probably even know and I want to THANK YOU for your selflessness and you sharing your family and your life…… Just THANK YOU!

  10. I wish I could tell you how much you mean to me. I wish I could tell you how your words are like a healing balm to my soul, oxygen for my lungs, light for my path in what is often a very dark place. I wish I could tell you that you are my friend, even though we’ve never met; my confidant, even though we’ve never spoken; my comforter, even though we’ve never embraced. I wish I could tell you how much you help, inspire, teach, motivate, soothe, and amaze me. Thank you.

  11. And I want to tell you… you are doing it. You find a way every day – to write for us, to speak for us, to be this amazing link to change. You make a humongous difference every day :)

  12. I can only echo the beautiful words of thanks said here. Thank you.

    Two little things to share: my coach (yes, I have one – they are great if you get a good one!), gave me a quote that I will paraphrase here: if you give up the ability – the right – to say “no”, you are giving up sovereignty to your Self. Katie is right. You can’t be responsible for everyone and every challenge.

    And the other thing is about the newly-diagnosed tent. First, could the mentors be virtual? I know that even having a mentor ok the end of a phone and/or email would have been immensely helpful. Sometimes it is necessary to have that person in your State or community, if it is services and funding you are navigating. But sometimes you just need a mentor to say “You’re on the right track.” Or “I’ve been there. You can do this.” Or “try searching for an (fill in the blank- ABA consultant, speech path, sensory gym, ballet class, community support worker).”. So if virtual was okay, and maybe it is, you could have more people sign up.

    And my second little thought is that if Kelley and ASpeaks want to reach the families and people that are newly diagnosed, they are not likely at the Walk. For a miriad of reasons, some emotional (too consumed grieving for what seems like a crushing burden to put on your baby) and some practical (eg too busy drinking information through a firehouse) I think it is exactly the folks who are not at the Walks that need a helping hand.

    All that said without knowing what the Tent is all about, so take it for what it is (quick thoughts on a morning commute).

    Thank you for creating the space that has conversations like these any many others. Thank you. Breathe.

    • Since we are just getting this mentoring program started, I imagine we will be relying on mostly “virtual” mentors in the beginning. Hopefully as it grows, we’ll be able to have more community based mentors that would also open up the opportunity for face to face connections. Additionally, depending on how this goes, we may see it grow into a program in other Autism Speaks Markets.

      We recognize that our “Newly Diagnosed Tent” will only reach those families who are at our walk, but these materials will be made available throughout the year at different outreach events and activities we participate in. The Walk just happens to provide us with our largest audience. Our goal is also to allow this tent to be a space where those parents can take a step away from the Walk and how overwhelming it can be to step into such a large community.

      This is our first year doing this and we want to have a meaningful impact on the families in our community, so we definitely welcome any further input and ideas you have. Please feel free to provide suggestions and ideas to kelley.borer-miller@autismspeaks.org.

      Thank you!

  13. Powerful post with so many layers that I will digest throughout the day. I am commenting on the “circles” – those circles that suck you into a tornado of emotions. I had a breakthrough with my son when I explained to him that having autism means that his brain gets “stuck” sometimes and he needs to press STOP or FASTFORWARD like he would when he is watching his videos. Having a visual of what he needed to do to move forward has helped him navigate those tornado moments.
    I do read your post and am always in awe of Katie. My daughter struggles to handle her peers when it comes to her brother. Her class is my son’s buddy class this year. She sees the eye rolling and hears comments from her tween peers. It hurts her. She is trying to defend her brother and trying to find her place as well. The other day she said, “Mom, friends come and go – family is forever.” She had to let another friend go. I am proud of all the siblings who are teaching their peers about empathy and kindness.
    When will my guilt blanket feel lighter?

    • when they have walked through the fire of adolescence and stand with their heads held high, changing the world? that’s what i tell myself. xo

  14. For the AS Walk Tent, would you consider sharing some resources and links to blogs written by adults on the spectrum? There are a lot of us out there, and we are sharing our experiences. I know I’ve personally gotten lots of feedback from a number of people saying that my blog has helped them to understand particular things their kids do, or helped them to help their child succeed in various things. I know other autistic bloggers have gotten similar feedback. I think it would be extremely valuable to provide contact information (or at least, the potential to read and contact) of Autistic Adults. :) Also, I’m not saying this to promote my blog. I’m saying this because I have had the experience of many parents telling me these things, and I think that more information from more sources is always a good thing.

    p.s. you really do have a couple of awesome kids. :)

    • Of course!!!! Kelley has a number of them on the list (and I added more). There is nothing more important than autistic role models and a sense of community for our kids (whatever age those ‘kids’ may be)! To that end, she’s also including links to Wrong Planet and Squag to ensure that autistic young people know where to go to connect with one another.

    • Oops – forgot to point out that she is specifically asking for both parent AND autistic (or autistic patent!) mentors. I put that in the post, but it may not have been clear. :)

  15. Gosh, I so wish that they sensory gyms for adults! I’ve struggled with sensory issues my whole life but only received a diagnosis (and OT) in college, after seeking it myself. I actually just moved to Boston, so thanks for keeping me up to date with what is going on in the special needs community here.

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