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.


  • 51.
    Marcia said…

    Hey Ali:
    Firstly, once again THANK YOU for a wonderful album track in ATL. If you remember me, I’m momma to Lukas (4) and Noah (2 1/2).
    Although Lukas does not fall into the spectrum, we deal with many of the same issues with him as kids with Autism. Eating has ALWAYS been a problem as well. It is so nice to feel like you are not alone in that struggle.
    Once again, you have put words (far more eloquent) into my mouth. Sometimes you have to just take a deep breath and DO. Lukas struggles with new situations also and I sometimes am tempted to take the easy road. For eample, parties..these are the worst for me. Lukas gets so excited to go then he is the most out of control kid there. Frequently he ends up isolating himself from the other kids. Museums, zoos, events are always like this. The smells, the sounds, the sights, the sun, the heat – all are over-stimulating for Lukas.
    I often wonder why I bother?
    But YOU know why I do, because I love my baby and giving him every experience I can and helping him learn how to keep experiencing is my most important job right now. I will do what is tough, I will do the hard things, I will be his buffer when people constantly ask “what happened to his leg?” I will EXPERIENCE and I WILL NOT AVOID! I will also show him that DIFFERENT IS OK.
    Although, I have only just had the opportunity to meet you, you haved touched my life many times in the past. Thanks for your continuing words of inspiration and support. I look forward to the next time we can meet again. – your fellow Life Artist – Marcia

  • 52.
    JoAnne P said…

    Yup. I have been avoiding what I knew would be an emotional experience.
    I am so afraid to dissapoint that I avoided letting go of one of the big (overwhelming) projects I was involved in because it would cause unrest and well…sad feelings. Even though I knew it was for the best for me and my family.
    Just this afternoon I did it and it was so very hard but, I feel lighter and the knot in my stomache is slowly releasing. So good to read this and know that I am not the only one to force myself to get outside of myself and not turtle.

  • 53.
    Sonda said…

    Wow Ali! So true! And don’t I know EXACTLY what you are talking about. I really do try to ‘experience’ rather than avoid, esp. when it comes to Baylee. She can’t tell me anything so it’s just a guessing game. Ya…I am tired, but like you said, I am the mama! You really inspire me girl. Things are happening around here that will make our lives much more pleasant. This was a great read today. Thank you!

  • 54.
    jenn said…

    i needed this post too :) Your awesome. Simon is awesome. Thanks for sharing your thoughts and wisdom;)

  • 55.
    robin said…

    I LOVE Simon’s daily progress chart – I can tell by that one organized pice of paper he must be in a really good school. Gosh, I just admire all you do and your wonderful way of putting things in a new perspective for me…

  • 56.
    Siobhan Jefferson said…

    I am sure that you have no concept of just how much you help those of us who regualarly read your site. I cannot imagine the emotional busyness that goes into Simon let alone the physical. I have two children who stretch me to the limits you describe and they have no additional needs. The way that you conduct your life and let us all in on it, is an inspiration that goes beyond words. Thank you for being so real and providing so much food for thought.
    On another note, I will be meeting you in Sydney (in two weeks yeahhhhh!!!)and am sooo looking forward to what you will be sharing with us – I feel as if I already know you! I have to say though that I am a little jealous looking at the sneak peek of the Today You class as I could not get into it because it was full. Anyway see you there and keep up the good work – it is tiring and emotional but worth every second – it has made you what you are and will continue to mould you to be what you are to become.

  • 57.
    Leonie said…

    you really are a wonder, dearheart.
    thank you for sharing as you do.
    what powerful and profound lessons there are ~~~~

  • 58.
    Jenny said…

    Ok, crying right now (good tears) because of your post! Everything you say is always so true. Because of your openess with Simon and his autism, you have totally encouraged me this past year to be more open about my Vince and his autism. I can’t tell you enough what an inspiration you are. I know you hear that all the time but you really are, Ali, truly such an inspiration to me. Thank you for these words. Like everybody else, I really needed this today.

  • 59.
    suetreiber said…

    Ali-thanks for reminding us to stop avoiding- so true!!!

  • 60.
    Diane said…

    Ali, thanks for sharing so much with us — this is such a rich community of people that read and respond to your blog and it is enriching my life by being a part of it. Taking risks and avoiding the “usual” or the “inevitable” is huge for so many of us. I am also experiencing this as I have made a defining life changing decision…ending my marriage. And it is filled with lots of self-doubt and questioning…past attempts to reconcile and the final realization it won’t work. Reading the life stories of everyone here does help me to realize we all have big burdens to bear and we all can help and support one another via sharing. So, thank you Ali for initiating such awesome discussions and thanks to all who post for sharing their thoughts and experiences. Peace – Diane

  • 61.
    stef said…

    THANK YOU! What a gift to share with us…
    I’ve been struggling with putting myself out there to live the life I dream of and now you encouraged me more..
    thank you dear you. keep on keeping on.

  • 62.
    Allison said…

    You know…I read your blog almost everyday. I always enjoy and can relate, but today your post just connected with what’s going on right now. I completly understand you feelings of reluctance sometimes.
    My little sister, Audra, has developmental delays and sometimes is it just so much easier to avoid things and stay at home, our ‘safe place’. Although she is only my sister, and although I’m only 18, sometimes I feel like a 40 year old mother to her. It can be so difficult, some people don’t understand, some people stare, sometimes Audra cries, sometimes I am just so weary. But everyday I keep pushing forward, doing the sometimes uncomfortable. Some days the only thing that keeps me going is the fact that she is my baby sister and I LOVE her, through the crying, the staring, through it all. Some days are good days, some days are bad. But they are all filled with love. Love for my sister by not sheltering her from the world, love for my mom and dad, simply by giving them a break sometimes. But always love.
    You words of pushing forward, taking that first step also resonated with me. Tomorrow I move out of my parents house, to the big city, an hour away. I’m scared. I will miss the people who have raised me, whom I love so much. But I must take that first step to be independent, so put myself out there, to make new friends, excel at work and school, fill my life with love, new and old. So thank you, for sharing with us everyday. But thank you especially for today, for showing me that there are days when everyone wants to avoid things, but that we must hold our head up, and carry on, with love.

  • 63.
    Barb said…

    Thanks, Ali. I don’t know where you find the minutes in your day to encourage and pull the rest of us along. Thank you.

  • 64.
    PamMc said…

    I admire you so much for being so honest and not AVOIDING the truth of your life. Thank you for talking about the hard things in your life to help others look at the hard things in their own lives. Have a safe and wonderful trip.

  • 65.
    Jen Kotas said…

    Love that communication notebook! I can’t even get Warren’s teacher to answer my questions, forget a note every day.

  • 66.
    Chasity said…

    once again you have nailed it. there are certain days when i get to read blogs. sometimes i go in spurts and read every day for 2 weeks and then i don’t get to read my faves for a few days. but it seems more and more when i hit your blog there is a message here that i needed to hear. thank you for being that voice for me…and many others! :)

  • 67.
    ArtsyMama said…

    Wow Ali, awesome advice. THANK YOU. I really needed to hear that.

  • 68.
    Ang said…

    every time I see a picture of Simon I am struck by how beautiful he is. There is something very deep there, we may just need to wait to see it all.

  • 69.
    Alicia in Asheville said…

    Ali, I pray that each day gets better for you and Simon. I pray that you will learn patience for him and he will learn to try new things. I know it is a hard diease to understand but we have ti have faith that one day there will be a cure or some help for it. Learning is the key and you are learning everything you can. Take care and my prayers are with you and your family.

  • 70.
    erin said…

    thank you for this post. what an inspirational way to look at how sometimes life is, and how to deal with it!
    be safe.

  • 71.
    Ang said…

    this is wierd.
    the note I left shows posted by ArtsyMama, and i am assuming the comment left by ArtsyMama show left by me.
    I am Ang, and i wrote:
    every time I see a picture of Simon I am struck by how beautiful he is. There is something very deep there, we may just need to wait to see it all.

  • 72.
    AnnB said…

    I’ve been avoiding life — just about all of it — for so long I don’t know if I can jump in… but I’m going to print your post and keep reading it over and over until I do something about me. Thanks!!

  • 73.
    kah-mei said…

    right on, sista, right on! i continue to applaud you for all you do and experience with simon, and i am all for living one’s dream.

  • 74.
    Brigitta said…

    Dear Ali,
    Every time I read your blog you amaze me with you wisdom, your patience, your love, you’re happiness, your understanding. You are a true inspiration!!!
    love from Holland

  • 75.
    corinne delis said…

    thanks again Ali for this wonderful entry, your post are always such eye-openers and they keep reminding me to keep working with Anthony. We have made such great progress since we made the decision to get a home-trainer, she has done wonders in our houshold. Now I am also taking your message for myself. i started to watch my eating habits this week and also started to go to the gym something I always dreaded. Have fun in Australia girl and thanks again! LOVE YA!
    corinnexxx PS: I have a lo of me and Flo on my blog if you wanna see, she looks cute!

  • 76.
    Laurie said…

    I know that you are getting a million comments on this entry, I am #76, I did not read all of you comments so if this is already a technique given, sorry. My Daughter Emilie has Sensory Integration, (A relitave of Autism) and one of the techniques that I do for her during her meltdowns is squeezing her muscles, (not hard but just enough for sensory input) and then compress her joints. Her Therapist says that she needs this input to Organize her thought process. Emilie does not like a lot of comotion, I had a Birthday Party at Build-a-bear, for my other daughter, Cassidie, and Emilie asked several times for me to squeeze her. She is getting old enough now that she knows what works. Just like your son from reading your blog & books (ok huge fan of your work) Kids with “these types” of issues, (I hate calling it a disability) are just so brilliant, and their thought process is so different that if you do sit back and experience, you can sometimes “get it” and enjoy their world. Ok, I am stopping the long post.

  • 77.
    Jessica said…

    Hi Ali,
    My name is Jessica, and I am a behavior analyst, working with children with autism. I happened upon your blog, and wanted to suggest reinforcing eating meat with a favorite food (like potatoes). For example, you would start with a tiny piece of meat. Once he eats the meat, you would then praise him for eating the meat, followed by presenting a bite of the potatoe (the reinforcer). Eventually, you will be able to increase the size and amount of meat that Simon eats, and hopefully he will come to enjoy the taste of it as well.

  • 78.
    Jude said…

    Hey Ali,
    Loved your comments today. Here’s something I did with an Autistic child I taught (also had gorgeous dark eyelashes like Simon). We played Wiggles songs – which he loved while he was doing something he didn’t like – a good with the bad thing. I used to put Wiggles on his Walkman so that he could handle going to assembly. Eventually we started to lower the volume until there was no sound then we took the earphones off altogether. Maybe you could modify this in some way with Simon?
    Again – have a great time! ; )

  • 79.
    barb Hogan said…

    Such wise words Ali! Big hugs. Have a fantastic trip!

  • 80.
    Nicole Bryant said…

    Wow, this sounds liek my life about 3-4 years ago. Both my twins were special needs in different ways. Seeing Simon’s journal totally reminds me of Elijah and what we had to do with him in special ed pre-k for 2 years before he could move on to regular prek. He wasn’t fully potty trained until well past 4, he lucked out because he looks so much younger than his age, so no one ever said much to me. For Hannah it was the changes, she did not take well to any variance of her schedule. She went completely backward for a while, wouldn’t talk, potty, hurt peopl and was destructive. It would’ve been so easy to avoid dealing with both of these issues, but it wouldn’t have helped anyone. Praise God, now at 6 1/2 they are getting ready to enter 1st grade this year and are on track for a good year. Keep your head up and remember that God doesn’t give you more than you can handle. He chose you to be Simon’s mom because He knew you would love him and care for him the way he needed!

  • 81.
    Ann(i)e said…

    Talk about a place to come for an uplifting, encouraging message….YOU ROCK ALI!!
    And to anyone wanting a little motivation to do the challenges in Ali’s new book, please follow link to my blog, we’ve got a whole online community doing the challenges together!!!

  • 82.
    Sara Mangan said…

    Thanks for the inspiration Ali. We are going to take the step to take dairy out of our daughter’s diet and maybe gluten. I have not done it yet because….it will be hard. Thanks for the push.
    You have a wonderful outlook on life.
    I have said it before but will say it again. Simon is lucky to have you as his mama.
    Have a safe trip.
    Sara M

  • 83.
    PROLIX said…

    You make me think that children are truly the same all other the world, & it seems we were the same at their age (yes yes really I hated meat when I was a girl :-D ).
    So, I just have to wait to have my own children, who’ll get on my own nerves, because they’ll hate some meat or fish too, one day…
    …Ali, how was you, when you was a girl, with your parents???
    Have a good day!
    Simon is so cute & natural.

  • 84.
    Carole said…

    Ali –
    Your words are so true, and often so hard to implement. My 23 month old has CP, and we have PT, OT, and Speech for a total of 7 appointments a week. Thus, we have a lot of “homework.” Sometimes it’s so tempting to blow things off and look the other way. What comes to naturally to most kiddos after trying a few times, my guy has to practice hundreds of times. But then he “gets it,” and the difficult work is so worth it. Still, there’s no denying it’s hard and there are days when I’d much prefer the easier route and avoid doing those things I know I must. I try to keep in mind the truism “What you resist persists.” In other words: just do it, because if you don’t it just looms larger.
    Thanks for being so honest and so real. You have so many people rooting for you and precious Simon.

  • 85.
    angib said…

    i so needed to hear this
    e v e y d a y

  • 86.
    patty said…

    thanks for sharing ali!!!

  • 87.
    tina b said…

    Thanks as always for sharing. I am an avoidance person by nature, something I know is a bad trait and one I am working to stop. It helps to know I’m not the only one

  • 88.
    anam said…

    simons inspires me.

  • 89.
    rachelle said…

    really needed to hear this today :)
    thanks ali.

  • 90.
    Mish said…

    Hi Ali,
    This is the first time I’ve ever read your blog and I can’t believe how much this sounds like my life. I have a very strong-willed daughter who is 4 (at least that’s what the doctor tells me!) and even though she is not technically “special needs”, she is about all I can handle. I never know how she is going to react to social situations, so much of the time I do avoid, rather than try it to see what happens. Thanks for reminding me that experiences are so important!

  • 91.
    Beverly said…

    I always read your blog with much anticipation and interest. You have so much going on in life, yet seemingly have it all together. I look at what I do in the course of a day and it seems like I stand still in comparison.
    Your post last night made me tear up for the small joys that you get to celebrate with Simon.
    Keep living … keep inspiring. You do it so well!

  • 92.
    Kim Faucher said…

    thank you , thank you, thank you for once again giving us that little push….
    lately its become too easy to just live in my safe little bubble…. so I’m off to do something “out” with Ryan.
    Kim Faucher

  • 93.
    Rebecca F said…

    When I was little, my dad complained to my pediatrician that I wouldn’t eat meat. Unfortunately for him, my pediatrician was a Seventh Day Adventist and saw no problem with this. We moved to a different town and my dad complained to my new pediatrician that I wouldn’t eat meat. This one was Hindu, and didn’t see a problem with that. My dad gave up. To this day, I do eat meat, but not much. Poor dad.

  • 94.
    Jodi said…

    Amen sister….do not avoid. I am a mother of a child with special needs. He was diagnosed with a language based learning disability. Which makes some things difficult. Like loud noises, causes him to cover his ears…like fire drills which happen once a month at school. And the buzzer at basketball games. We are learning different coping strategies, so he can participate in basketball, and not freak out at school. You are so inspiring.

  • 95.
    Aimee said…

    Simon is one cool little dude. And he is SO BLESSED to have such wonderful and caring parents who understand what life is all about. You inspire me everyday.

  • 96.
    shanna said…

    Where did you get the communication notebook?

  • 97.
    Sarah said…

    Completely unrelated to my son’s special needs, but I so needed to hear that risks are important. Facing a real jumping off point in my life and not sure if I can step up into the experience or if I will pull back and shy away (AGAIN!).
    Very scary, very hard. Thanks for the nudge.

  • 98.
    Yvette said…

    Thank you, I so needed to read this one NOW!!!

  • 99.
    Jess Stoops said…

    Ali- You continue to inspire me!!It is great to hear about Simon’s struggles and successes. I can relate due to my special ed. background and my son’s apraxia.
    I have been stressed about potty training and afraid that he couldn’t do. I finally have stopped avoided it and he is wearing underwear. The best part is that my son is so excited and proud. We are on our way…
    Thanks for the message about importance of experience. Sometimes we get scared of failure and freeze, but doing is often the best approach.

  • 100.
    ~leah g~ said…

    Thank you so much for your message. It’s hard, sometimes, even when there are no “obvious” limitations, and your words/reminder is so encouraging. Thank you for sharing.

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