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.

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103 thoughts

  1. Marcia says…
    08/03/2006

    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

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  2. JoAnne P says…
    08/03/2006

    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.

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  3. Sonda says…
    08/03/2006

    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!

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  4. jenn says…
    08/03/2006

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

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  5. robin says…
    08/03/2006

    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...

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  6. Siobhan Jefferson says…
    08/03/2006

    Ali,
    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.

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  7. Leonie says…
    08/03/2006

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

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  8. Jenny says…
    08/03/2006

    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.
    xoxo
    Jenny

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  9. suetreiber says…
    08/03/2006

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

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  10. Diane says…
    08/03/2006

    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

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  11. stef says…
    08/03/2006

    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.

    Reply 0 Replies
  12. Allison says…
    08/03/2006

    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.

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  13. Barb says…
    08/03/2006

    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.

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  14. PamMc says…
    08/03/2006

    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.

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  15. Jen Kotas says…
    08/03/2006

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

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  16. Chasity says…
    08/03/2006

    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! :)

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  17. ArtsyMama says…
    08/03/2006

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

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  18. Ang says…
    08/03/2006

    Ali,
    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.
    ang

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  19. Alicia in Asheville says…
    08/03/2006

    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.

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  20. erin says…
    08/03/2006

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

    Reply 0 Replies
  21. Ang says…
    08/03/2006

    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:
    Ali,
    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.
    ang

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  22. AnnB says…
    08/03/2006

    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!!

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  23. kah-mei says…
    08/03/2006

    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.

    Reply 0 Replies
  24. Brigitta says…
    08/03/2006

    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
    Brigitta

    Reply 0 Replies
  25. corinne delis says…
    08/03/2006

    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!

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