Ali Edwards Capture life. Create art.

August 3, 2006

Keep experiencing and don’t avoid.

Last month I got an email from a woman named Lisa. She was encouraging me after that crazy trip to the post office. The point of her email was this: keep experiencing and don’t avoid. As an occupational therapist she has seen many families (kids and parents) benefit from experiencing rather than avoiding. I totally resonate with this idea.

And you know what? It is hard.

Sometimes it is easier to just avoid, go down the same path, not take the risk, just stay home. Especially with a special needs kid who responds differently to everyday situations. In all reality, it does no one any good to avoid.

Sometimes I want to avoid stuff. Like taking Simon to school. He does awesome when Chris takes him – when I do, it’s not so awesome. The reason? It is different. Things that are different are hard for SImon. But helping him through these things, and finding ways to work through the moments, are part of my responsibility as his mama. I have to put aside my own feelings of wanting to avoid so that I can make his experience better. So that I can show him that different is ok.

Simon likes to try to avoid stuff too. Like meat. Lately we have been working with him on trying new foods (anything other than potatoes). The school is on in the whole adventure with us as well. Here is a copy out of our communication notebook talking about meat:

Putting the meat on his tongue is the first step. Then gumming, Then maybe chewing and potentiall swallowing…and maybe even ending up liking it. So many things in our lives involve experience rather than avoidance. Experience makes our lives richer. It helps us develop or true sense of self. Assists in the development of our minds and our hearts.

Maybe there is something out there that you are avoiding (as simple as meat, as complex as the changes you need to make to live a happy, passion-filled life). Something that appears to be so very hard to experience. I ust want to take a minute to encourage you to take that step today – whatever that means for you.

Life is for living.

Comments

  • 1.
    Kimberly L.C. said…

    Oh my… have you had a hidden camera trained on my life??? This message resonnates with me so much right now. There are so many things I need to do to be happier right now — find a new job (stop avoiding the application process), exercising consistently (stop avoiding the gym) and stop avoiding the realization that I can’t make everyone happy all the time and just do my best to be happy and live fully with those around me. Thank you Ali!

  • 2.
    Alana M said…

    True enough…

  • 3.
    jenn shurkus said…

    as always thank you ali for the wrods of wisdom…. i always find them so refreshing.. and use them to reflect on whats going on in my life at the time :)

  • 4.
    capello said…

    I have a hard time pushing myself to do stuff, because it can be so much easier not to (one of my sons and I have sensory integration disorder, which for me turns into public panic attacks at times).
    But life is so much full if it is *lived*. And thank you for getting the message out.

  • 5.
    Yvonne said…

    Ali,
    I have to say that this post comes at a very timely time.
    It is very h ard to keep experiencing and not avoid — as it puts so much stress in our lives. I hope Simon will like eating meat progressively — especially the kebabs when he grows up!

  • 6.
    Denise said…

    Thank you. I so needed this post today. :o ) Feeling much better now…

  • 7.

    I so LOVED your post today — have been trying to get the ball rolling with Modifications and such at Noah’s school — he has Tourette Syndrome — and was diagnosed this year but because we moved and he is going to a different school – i feel like a lot of the progress we had made with the last school has been washed away and now we are starting ALL OVER — frustrating but NECESSARY — I want him to have the BEST EDUCATION — (change is really hard for him to deal with too) — thanks for being so open about your life — and know that it gives others the extra push we need sometimes
    thank you

  • 8.
    Ilona said…

    Just wanted to say how much you inspire me. I met you in Ohio at scraptacular and love your books, articles, blog and view on life. YOU ROCK! Scrapping has really helped me put in words how I feel about things that happen in my life as well as make me feel creative. When I am having a bad day with my kids I keep reminding myself to be grateful for what I have in them. There are so many others who face challenges with their children that I can’t even imagine. As a stay at home mom I found myself in a comfortable rut and decided to push myself and start watching a friend’s children 2 days a week. Everyone thought I was crazy to do this but it pushes me in a way that I like-trying to be more organized and utilizing my time better. Well thanks again for giving all of us something to think about. I have a five year old who is just starting to eat cooked chicken and turkey (not nuggets!) and I feel very proud! Hang in there and safe trip!

  • 9.
    Gina said…

    My three year old son is autistic. I struggle with this very thing. I too have resigned, as you, to go do those very things. The beach petrifies my son. My job as his mom is to be the “buffer” to the world. But if I ignore this all important task, and keep him isolated, he may never experience the richness of life I could have shown him. As mommies we alone have that unique opportunity. The unique chance, before they are grown and it’s really too late. What a fresh perspective you have. Beautiful and true. I’m with you, I understand.

  • 10.
    Sarah G. said…

    I am a stay-at-home, homeschooling mother of 4, one of whom has Autism. The other 3 have inherited my hesitancy in trying new things, activities and going new places. I don’t want them to have this life-limiting trait. So the statement that has become somewhat of a family mantra, “Sometimes you have to be brave.”
    Go Simon, sometimes you have to be brave.
    Sarah G.
    Olympia, WA

  • 11.
    katie said…

    Ali, you are just incredible. And I really mean that. With all of life’s challenges you don’t let them turn you away, you just move forward. You are the living definition of “inspiration”.
    Take care & safe travels!

  • 12.
    laura t. said…

    so true for children & adults…thanks for the reminder. and wtg Simon with the meat!

  • 13.
    Jen said…

    Wow, what an important reminder. Thank you for sharing this with us today!

  • 14.
    Denise Kashyap said…

    WOW, you hit the BULLSEYE. This is so dead on, so applicable to me at this moment, and I thank you for inspiring me with the nudge I needed. Avoidance can be so much EASIER, but life is so short not to live it and FEEL it.
    Also very cool to see how well Simon is doing in school. Gotta be so proud of your little dude!
    Have a safe, AWESOME time down under!! Take care.
    Denise K.

  • 15.
    maggie Holmes said…

    great thoughts ali! it is so true – and yet so hard at the same time. i think as mothers of children with autism we are so protective of them and we are sometimes reluctant to let them experience because we are afraid of what might happen. i am experiencing this right now with tyler starting to go to the public schools and i am so nervous about him fitting in, keeping up, etc. and yet, every day he surprises me at how well he is doing. and i have to remember that his best is o.k. and that it is not all about keeping up with the other kids but just about keeping up with what he can do!
    thanks for the reminder!!
    hugs
    maggie

  • 16.
    Kimberley said…

    Thank you so much for your post today! I so needed this. I have so many things I need to be doing right now to put my life in a much happier place. Your words are just what I needed to move me into the right direction. Amazing and inspirational!

  • 17.
    Erika Martin said…

    I SO understand where you’re coming from, Ali. My 7 1/2 year old “Zachy” doesn’t take change well, either. Things outside of his routine can throw him for a loop. There are times when I am scared to death to take him into a new situation…..even into taking him into the store sometimes…..because I know there’s never a predictable way that he’s going to act. But I realize it’s a stretching experience for each of us and would I really want to miss out on that? Even if it’s hard? Sometimes I’d like to answer yes, but that’s only out of my own selfishness. When I think about it, deep down, the answer is no. Life is short…..drink it up while you can. Even the trying times. It’s better to go out of this life with as many experiences as you can possibly fill it up with than to regret the ones you answered no to.
    Keep on drinking it up!
    -Erika Martin
    http://www.stampinmama.typepad.com

  • 18.
    Debby said…

    Ali, you are amazing! I appreciate how something like eating a piece of meat can become a huge life lesson when we take the time to reflect! I so appreciate how you do this! I just made a big decision in my life, stepping out of my comfort zone, taking some risks, and your message was inspiring and affirming to me. Thank you!

  • 19.
    Amy B said…

    You couldn’t have written this at a better time. I just got home after visiting a potential preschool for my four year old. I have procrastinated until now to take this step because I can’t believe that we are already at that place in her life where she leaves me for a few hours a day. Maybe I selfishly waited in the hopes that everything would be filled and we would have to wait, but how childish that makes me sound and feel:) It’s been difficult to face the fact that it’s time and of course a very healthy step for her. But for three hours, twice a week she will be away from me……and now she is signed up.

  • 20.
    Muriel said…

    So true we tend to avoid things, so they can’t affect us, but we need to take whatever may come. These experiences only help us to grow and to continue on our journey. Thanks for sring your story.

  • 21.
    lisamcg said…

    You have no idea how this resonated with me this morning. Thanks for posting. I needed this post a lot.
    Have a great trip too. :)
    Missyou.

  • 22.
    CD said…

    thank-you for that post. For Tiara, for me for us all. a good reminder that We gotta just LIVE it now today…thank-you :)

  • 23.
    Mary Rogers said…

    It sure is hard, and thanks for the reminder Ali….life is for living, and taking chances, and making decisions.
    ~Mary

  • 24.
    Lora said…

    Wow… I needed that today… sitting here with tears in my eyes… thanks!

  • 25.

    Ugh. I don’t know how you keep such a positive attitude! LOL – I love that about you (I have been a lurker of your blog and writing for a while now), but I just don’t know how you do it. I have a 4 1/2 year old with autism (high-functioning) and ADHD and a 2 1/2 year old with ADHD and a neurological disorder, and the days can be so hard. Sometimes it is just easier to avoid! I was diagnosed with a significant illness last week that makes me REALLY want to avoid EVERYTHING, so I look to blogs like yours to make me realize (1) i am not alone and (2) I can get through this. Thank you for keeping it upbeat and giving us reason not to avoid! :)

  • 26.
    yolanda said…

    This post so resonated with me as I am making changes that are hard but necessary for me to live a richer life. I am moving to Oregon in 3 weeks and excited but a little scared. I know that It will make me grow and change for the better. As ever you continue to be an inspiration to me.

  • 27.
    Tara said…

    It is so easy for us to just avoid and not experience change or things that are difficult. Thanks Ali,, for sharing your Simon stories with us. I’ve been lurking her for quite awhile.
    I am an RN and have worked with both adults and children with developmental disabilities,, I am always challenged to change my outlook, my goals, and well,, me because of the things they’ve shown me.

  • 28.
    Keeley Tillotson said…

    This really resonated with me Ali. Thanks.

  • 29.
    Maria said…

    Wow! Another great post, Ali. I cannot tell you how much this speaks to me. I have many things in my life I have been avoiding. You have totally provided something for me to think about. Thanks again for all your wisdom.

  • 30.
    Alison said…

    Yes to all of it. After a year plus of waiting for the perfect wallgrafitti to fall into my lap, this may just be it. Granted, it will look completely random and unartistic, but I’m near certain I could benefit from seeing that in print every day. Especially if that print was say, ten inches tall…
    thanks, dawg.

  • 31.
    Michelle said…

    Thank you for this totally inspiring post. So true and so important. I’m printing it off and putting it where I can see it and be reminded to experience life. Every day.

  • 32.
    Sharna said…

    I just pasted this quote into my own journal today….
    “The purpose of life is to live it, to taste experience to the utmost, t oreach out eagerly and without fear for newer and richer experience.” Eleanor Roosevelt
    Thanks for all that you share Ali! Sharna

  • 33.
    Missy said…

    Ali–
    Tearful over this entry– there are some areas in my life that are needing this- different is ok– go ahead and experience it– somehow it felt like this post took me by the hand and encouraged me, as you do Simon.
    Thanks-
    Missy Kemp

  • 34.
    DebbieP - NZ said…

    That is just awesome Ali about Simon and meat…
    You are a total inspiration. A girl i scrap with as an autistic son and through your blog i have learned many many different ways to interact with him.. I have only known his mum and him for about 7 weeks but now everytime they pass our house on the way to day care he sticks his face to the window and continuisly points to our house and i even got a hug and kiss yesterday when they left. Cherly said this is huge for him as normally on his mummy and daddy and family get that privaledge (sorry for sp. So thank you Ali for your inspiration and thoughts…Have a safe flight and see you next week – Cheers, Debs

  • 35.
    Zonnestraaltje said…

    I read your blog every day, though rarely comment because there are just so many comments that I will just sound like an echo… so that’s one thing I avoid…but not today. Today I wanted to thank you for this different persepective on things, which I have taken to heart. Thank you very much! :)

  • 36.
    deirdre said…

    Such a good post. Thank you. So many people reply here, I often think you don’t need another post—but this one gets to the heart of it and helps me say “yes” to life, to change, to opportunities, when “no” would be so much more comfortable.
    I love comfort, but I’m slowly realizing that it’s now why we are here. The discomfort of growth has to go with it, hand in hand.
    I don’t know how you manage to even think in full sentences while juggling so much, but today’s post was a blessing. Thank you.

  • 37.
    AJ said…

    Ali, with all the turmoil, stress, and extra added work in your life, I think you are amazing and strong and that you will get through this just fine. Sometimes it is easier to back off or say “no”, but you are teaching Simon, and yourself, some very important lessons. You rock!

  • 38.
    Audrey said…

    Thank you Ali!
    Have a wonderful and safe trip

  • 39.
    amy j said…

    If you ever get tired of scrapping, you could DEFINITELY be a motivational speaker. Great post, as usual. Something I needed. I’m avoiding cleaning my kitchen right now, lol. Thanks again for your thanks to my thanks email, LOL! Enjoy your trip!

  • 40.
    Brek said…

    great post, Ali. You are an inspiration not only with your art, but also with your outlook on life. Keep it up, you have no idea how many people look up to you.
    Brek

  • 41.
    Sam said…

    Wonderful post Ali – something I constantly have to reminded myself.
    Curious about the communication notebook – was that specifically developed for Simon’s school or is it available to anyone? We’re trying to find something similar to that for this school year.

  • 42.
    Liz Ness said…

    Thank you Ali. This is just the thing I needed today! Sometimes it can be so hard to dip that foot into the water.
    My own son’s therapy involves all sorts of new experiences (it’s for speech, but is a little farther reaching with regards to tactile and sensory exposure). At times, it’s really challenged him. Now, however, these experiences are starting to have their rewards. Also, I’ve been a little surprised at my own growth as a result.
    Still, it is easy to get lost and forget why we are trudging knee deep into something that upsets our children. So, I am grateful for your reminder of the bigger picture: Experience, don’t avoid. Good or bad, experience leads to growth.

  • 43.
    teresa said…

    cool advice. And who doesn’t need to hear that more often. Take the risk….like that!

  • 44.
    kristin said…

    Thanks so much Ali! I was stressing a bit about how Abbi was going to handle our upcoming trip, but you’re right… we need to experience, not avoid. We need to just make this trip everything we can, focus on the good, not the bad, and do all we can to make her comfort level the best it can be, so that she *CAN* experience. thanks ali :-*

  • 45.
    Angie said…

    I am so thankful that you wrote this entry today. I wrote you one other time – about my little Caroline who was born with Down syndrome two years ago.
    Eating issues are big with us. . .and you made me feel like I wasn’t alone. There are times I take the well-worn road (as opposed to the road less taken) when it comes to feeding time. But you’re right-experiences (good or bad) are what make us grow.
    I too, am wiping a tear or two because it feels SO good to know that I’m not alone. Even though we’ve never met – and may never meet – you, your life, your words, your family–all are part of my everyday life. Thank you for blazing a trail out there. We’re listening. We’re reading.
    And, we’re touched.
    Angie
    East TN

  • 46.
    Flo said…

    wow — so true
    there’s so many levels to being, to living, it continuously astounds me…
    thanks for sharing.

  • 47.
    cindy said…

    Thanks again Ali for just a meaningful and thought-provoking post. How do you do it? How do you tap into my mind and type the words I NEED to hear everyday?! Peace and blessings…Cindy

  • 48.
    Karen Geckler said…

    Today I came home from work feeling very depressed. All of my co-workers and I are being outsourced to lower-paid contract employees. That is 35 people out of work after as little as 6yrs and as many as 46yrs. (20 yrs for me) I worry about income and insurance and all of those “practicle” necessities.
    Then I read Ali’s blog. Again, my gratitude goes out to Ali for seeing the bigger picture, the possibilities that are available, the prospect of better things to come—experience, take the risk to move forward. Now I just have to keep that on the forfront of my thinking process.
    Thank you Ali! I will not let this defeat me.
    Cheers…………..Karen

  • 49.
    Adele said…

    Just remember that many of the things that you and Simon experience are common experiences for everyone — the difference being that it is “heightened” and much more intense. I work with high school students with autism, we have nine (identified) in our high school of 1900 students. Everyone of them is unique and they have all traveled different paths, but they are all very successful in school and have grown so much over the last few years. I am so proud of how hard they work and how aware they are. They are all learning to be their own advocates in life — what a goal. I love reading your blog — it is such an insight.

  • 50.
    Sarah M said…

    I love yout thoughts and could not agree with you more. I avoid things ALL THE TIME! Thanks for this reminder. I will remember it.

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