how

Yesterday, I wrote a post that said this …

(Ed note: If you haven’t read it yet, please click HERE so that the rest of this will make sense)

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Yes, this life is a roller coaster.

A big, scary, exhilarating, exhausting, beautiful roller coaster.

And it looks something like this …

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images-2

After reading the post, a reader had a question.

Jess, you are so open and caring, I feel like I can ask you this question and you might, just perhaps, feel like you can answer me… How do you handle living on an edge each moment? I read your blog, and get inspiration and comfort knowing ‘others’ do get through their days too; often still smiling. But today while reading your post, the question burned in my head… how does she handle this constant, on-alert, atmosphere in her life? (Does this question make sense?) My oldest son has Down syndrome, but is not my source of waiting for the time-bomb of emotion to overload… that’s my second son. He has many anxiety issues, and sensory processing issues, and it makes daily life often tenuous – at best. How do you process the mental energy that constantly flows through your brain, trying to be ‘ready’ for whatever might spring up? Trying to avoid even tick-tick-ticking up the ‘up’ side of the roller coaster, trying to be preemptive before you hit the dreaded over-the-top decline, is beyond exhaustive most days. If you feel you can, could you share any insights on that??

Thanks for the kind words, Michele. I do care, and heaven knows I’m open. More on that in a bit. But first, to the question at hand …

How does she handle this constant, on-alert, atmosphere in her life?

Well, like everything else in this sticky, messy, complicated world in which we live, there is no clean, simple, uncomplicated answer. But there are answerS – a few of them, which, when put together kinda, sorta work. So here goes. In no particular order, these are (some of) my answers …

I share our story. In so doing, I am reminded daily that I am not alone. That WE are not alone. That when we are sitting in a middle school auditorium struggling to make it through Big Sister’s concert, feeling like the Only Ones, there are countless other Only Ones in countless other auditoriums in countless other places who Get It.

I laugh. A lot. And I laugh big. It’s fuel.

I never, ever, ever “avoid” the tick-tick-ticking up of the roller coaster. For the love of God, that’s the part I live for. It’s the balance. It’s such a shame to lose the good times because we’ve spent them fearing the disaster that we think will inevitably follow. When I find myself there, I start over. I reframe it. I remember to look at it not as the rise before the fall, but simply as The Rise. The part where we get to enjoy the view. To breathe in the rarefied air. To revel in the Happy.

I pull tiny moments of joy from each day and I do my damndest to CELEBRATE them. I make them larger than life. I make blog posts out of thirty-second interactions. The ticking up of the roller coaster — it’s everything.

When it’s too big, I get help. Real help. Professional help.

The help that I have wasn’t easy to find. It was a process. And the process kinda sucked. But one phone call led to another which led to another, which brought me to a safe space to talk when I need it and advice that I can trust using a school of thought that I can accept. For me, it’s CBT. It’s strategies like grounding – taking myself out of anxiety by slowly, methodically, putting myself back into the moment. When there’s no time for all that, I simply slow my breathing. I do that A LOT.

And sometimes, just sometimes, I just plain lose it.

And when I do, I try to remember my advice to others — treat YOURSELF as you would a trusted friend. What would you say to HER if she were falling apart? I doubt that berating her for having a tough time would be the first thing to come to mind. I TRY.

Oh, one other thing.

As over 247,000 of my closest friends now know, I also happen to, for when all else fails, carry a bottle of Xanax in my purse.

But really, that’s just for shopping.

Screen shot 2012-12-06 at 5.57.11 AM

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Michele, I hope this at least scratches the surface of the question. It’s a big one, and there’s an awful lot of different ways to answer it. To everyone else, please feel free to share YOUR strategies for keeping it together in the comments. I’d love to hear them!

24 thoughts on “how

  1. So let me get this straight, you handle your stress by wandering through stores without money or identification other than drugs that are prescribed and then when you wander home or “they” take you home, you sit at the computer and give mental health advice to thousands about how to deal with their stress. Did I get that right????
    Sounds like my little girl to me.
    Love you,
    Dad

  2. This was really important to share…thank you, myself and many of my students follow you (I teach a working with families of students with ASD course at a local university)–you provide us with so much beautiful insight and inspiration.

  3. I love what you wrote about not living to avoid disaster. It is so true and too many do it. I also would like to add to that part, my son learns the MOST after a disaster. He takes more away from those horrible times and learns and grows from them. Don’t we all? You have to have ups and downs. It’s called living! Some have higher highs and lower lows, but if my son comes out of it understanding more about how to handle a situation, so be it. I can get through it if he can. We just had this happen last week.

  4. My way of handling that perpetual cycle of waiting for the other shoe to drop? Friends. Community. Family that I’m connected with not by blood, but by the commonality we share that is our special needs children. Each day that I share my story and someone says “Me too!”, that gives me back a little sense of peace, for I know that I’m never alone.

    That and – sometimes – every girl needs a glass of wine or a date with two men named Ben and Jerry.

  5. The biggest one for me is taking time for myself. Alone. I need it. Most days it’s only 20 minutes in the morning. When I can stay awake, or don’t get home too late from work, I might get an hour to myself at night, after everyone is in bed. That time is precious. It helps me keep my sanity.
    I get up earlier than I have to in the morning, just so I can have a cup of coffee in quiet (and read your blog-my morning ritual).
    When we’re in the midst of it all, I remember to breathe. And I seek out support from friends and family who Get It.
    My husband and I talk about Cymbie. A lot. That open dialoge is also very helpful.

  6. You remind us all that there is so much strength in vulnerability! I have a son that tested on the Aspergers spectrum and he is now 15 (almost sixteen) years old and I feel almost as if we have come out ‘on the other side’, so to speak. I have a daughter who is 13 as well, and our life is filled with our certain share of topsy-turviness.

    Humor, staying in the moment, appreciating the struggle, all in my mantra as well. I started a blog (www.domestichitwoman.blogspot.com…shameful self promotion…shame…shame) about 2 years ago and writing and sharing and hearing other peoples stories is so incredibly important to me!

    Bravo Jess! You are the master of your own chaos! I am a faithful reader to the end.

  7. We have lived in our building for 16 years. Everyone in our building loves Molly (16 years old). Yesterday, a new neighbor who saw Molly get off the bus in a very anxious and upset mood, rode the elevator with her. Molly got off on our floor and the neighbor went on to her floor. When she got to her apartment she actually called the doorman to say that “that girl shouldn’t be unsupervised in the building and that she was scared of her.” I should add that this woman is a very famous high profile journalist who should know better. I mention this because it’s amazing to me how clueless the world is about our kids. Molly is no more dangerous than a chair. She is a loving and warm child who happened to get off the bus very upset and nervous. We need to educate the world about our kids so that they aren’t dismissed and judge every time they have a bad day.

  8. That was awsome. And the funny part is, I’ve been venting that I need medication! sort of kidding, sort of not. I’m not depressed, so I don’t want an anti-depresent, but the anxiety and panic attack feelings at times can be so overwhelming. People think I’m kidding because I keep it together so well, but a stroke is on the horizon if I don’t get some relief! Road rage has a face…. and it ain’t pretty.
    Perhaps I’ll call for a script as well.

  9. Oh Jess, shopping with Xanax instead of a credit card…the typical life is vanilla, and yours is rootie-tootie with sprinkles. How do people who are not you keep from dying of boredom?

    On coping as an ASD parent – for me it’s helping others in our same shoes, parents who aren’t as far along the path. That way, at least something good is coming out of our more challenging and painful experiences. Like you blogging to reach out…but for me, it’s meeting with younger parents in person, and doing the ministerial tasks to keep our local ASD parent group going, and answering questions from others about what worked for us when. Lobbying for improved programming, even when it is too late to help my kid. Supporting our political leaders who support us (it does matter, folks) by volunteering for their campaigns, donating, and signing their petitions to sway other legislators to support bills to support ASD. And remembering to thank the educators and other SPED workers who are at least trying really hard to help our kids, while being underpaid and overworked.

  10. I love this. I get through by reading your blog and posts and understanding that I’m not alone in this journey. I’ve learned to laugh at how crazy our life has become but loving every moment of it because it’s made me a better person. When Aidan decides to “display” his “artwork” by drawing on the walls with a permanent marker I took a picture and told myself “Is this really going to matter in 5 years?”. I’ve found that by asking myself that question I don’t blow up and lose my mind on most of the “surprises” I’ve come across. Aidan breaking into our fireproof safe with a wooden spoon (he might have a future as a cat burglar), somehow reaching the ceiling fan in our bedroom and ripping the blades off, breaking 3 dozen eggs on our bed (amazingly there was no evidence as to who did that one on either boy) etc…And when it gets to be too much I hand the boys off to my husband, take a hot bath and lose myself in a good book. It’s all about finding my “re-set” button by doing the small things like a bath or a nice glass of chai tea that turn a bad day around.
    Thank you so much for sharing your life with us. I tell everyone I meet about your blog.

  11. ♥♥Thank you Jess♥♥
    Humor thrives in our house too, as well as prayer. Between those two things, we are managing this difficult, blessed job of parenting our amazing kids. But as we all know, ‘managing’ is a relative term. Hearing your insights, and usual open-hearted honesty, really does help everyone who reads this (like me!) to know that perhaps allowing ourselves to be truly HUMAN is how to ‘handle this’ after all. No Super Powers necessary… just a lot of love, support, and the occasional ‘aid’. 😉 Yay Being Human!!

    Oh – and LOVED the reminder to embrace the ride UP the coaster… too often I get too wrapped up in avoiding the negative which inevitably happens, and don’t allow us to revel in the adventure along the way. Very important reminder indeed!!

  12. Hello Jess, I read your blog everyday and I just wanted to thank you for what you do. If I was a wordsmith (I don’t even know if that should be one word or two, ha!) like yourself I would come up something really good to say here. But I’m not not. So I’m just going to say that finding your blog has changed my life. I no longer feel alone or on “autism island” and I now give myself permission to feel the things I do without beating myself up. I’ve learned so much from you. You are the bomb .com!

    Also, all this rollercoaster talk got me thinking about a certain movie clip. I think another blogger posted it and I’m not sure if it was you or not, but after having my daughter it takes on a whole new meaning for me. I’ll be damned if it doesn’t make me tear up every. single. time. Here it is if you would like to check it out. http://www.youtube.com/watch?v=w1h_hmdVJAc (If the link doesn’t work just type in “Parenthood roller coaster clip” in the search engine. It’s a clip from teh movie parenthood.)

  13. I LOVE this post because it not only gives sound advice, it lives it . . . meaning you speak about the power of laughter and then you make us laugh our butts off to show us that it really does work. Brilliant! Simply brilliant. And your father’s observation is hilarious! Love it!

  14. @Jacquie, many anti-depressants are also prescribed as anti anxiety drugs also. *hugs* talk with a medical professional about it. the worst either of you will say is no. Many of the common ones have generic versions (prozac generic in the most common strength is on the walmart $4 list if cost is a concern) Nothing ventured, nothing gained.

  15. I just love you, Jess.

    I use the same coping strategies. A good dose of friendships, enough sleep, red wine on occasion, and a Rx for Ativan (a recent addition, but rarely used). And being thankful for my husband every day, so that he will keep being our rock. 🙂

  16. Jess, thank you so much for taking the time to try to help me with my situation involving my employees. It means a lot. You have a great heart. I love reading your words. My name is Chris btw. (friend of The Roc Chronicles)

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