Posted by: Autism Speaks | March 9, 2010

Why I Walk – Cause and Effect

This guest post is by Sarah Donnelly,  the parent of two children who have autism.

May 15 is the date for this year’s Walk Now for Autism Speaks in Chicago. This will be the fourth year we have walked as a family; the first year that we are walking for our son Jack.  In retrospect, I think I always knew I was walking for Jack too, but I was comfortable keeping my head buried in the sand for a while. But as you all know, living in denial is not living so this year Jack will join his sister Emma and the statistics will grow by one.

I think it is safe to say that all of us are entrenched in some kind of cause; a cause that directly affects you, a family member or friend. Each of our causes are represented by a symbol, assigned a color, and even given a month. For some, the “cause” for the cause is known; for others, like autism, the cause is veiled in mystery. I have been living with autism for seven years and have grown numb to the number of theories surrounding this disability. And with each dollar raised, I grow tired of trying to find a reason that this has happened; my interest lies with how this population is going to be supported and kept safe.

But how do “causes” affect people, specifically the caretakers. You don’t hear too much about that. Scientists are entrenched with finding a smoking gun gene; advocates are entrenched in finding blame with the pharmaceutical companies or environmental catalysts. There is so much dust stirred by the cause itself that the voices of those affected are drowned out.

I can remember a person asking me once how my husband and I got so lucky to have not one but two children on the autism spectrum. I was left speechless at the remark although I did realize that the context wasn’t intended to be mean spirited. In some regards, I probably asked for it. I put up an easy going, smart aleck facade, but the truth is that I don’t easily share how I’m feeling.  Even amongst my friends that have special needs kids, it’s hard to articulate what’s it like to have two kids needing constant care.

There is no question that the effect that autism has had on me isn’t good. While I have learned to exercise patience and empathy while caring for Emma and Jack, those characteristics don’t always translate well towards other people. I also grapple with jealousy like you wouldn’t believe. It is so ironic … I love hearing about people’s lives and I am truly vested in listening to all the wonderful things that families are able to do with one another. Yet the pain it brings is sometimes so suffocating that I literally have to step away. And while one would argue that I should share those feelings I just don’t think I can – making me a poor friend a lot of the times.

It is a daunting task to give support to a friend or family member waist deep within a cause. The fear of saying the wrong thing or not saying enough can be stressful. And whether you choose to help by donating monetarily to a cause, volunteering your time or offering an hour of respite, please believe that your efforts are appreciated more than words could ever express. It is my hope that I can learn to share more and ask for help when I need it. Because as you can imagine, being in the trenches with a cause is not only exhausting but can be incredibly lonely. And there are just some days that I can’t find any humor in that.

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Responses

  1. I am so glad they posted this. It struck a chord in me when I read it on your blog. Thanks for being willing to share your feelings! You really are an inspiration. (Don’t roll your eyes, Sarah. Seriously!)

  2. I am living this kind of life too. I don’t know why we were chosen to do this, but it has helped me to see what’s really important. There is nothing superficial in my life anymore, it all means something…no matter how small. If I have a bad day, it passes, and your’s will too. There is beauty out there. It has to be looked at with a different perspective…you must look a little deeper at things, but it’s there. Hugs to you…you’ll make it!

  3. Beautifully written. I have been living with autism for 13 years and I still feel exactly the same way as you do.

  4. As a proud father of an Autistc son, I will love to thank you for blog. It help us remember, how lucky we all are, to be trusted with angels.

  5. thank you so much for sharing. God bless us all.

  6. Thank you for putting your feelings in such a couragest and honest way. While it is uplifting to hear of break throughs and how special and amazing our children are, the reality is when your friends tell you that there child has straight A’s, went on their first date or got their drivers license, you smile and congratulate but it’s like a knife in your heart. It does keeping sustained friendships very hard.I too will be walking this Saturday in Jensen Beach florida for the first time for my daughter and unfortunately for my only grandson.

  7. You are a Beautiful Woman and Mother. I do not know you. But every Parent out there dealing with any Special needs child deserves to be praised and loved a little extra. I too have a Beautiful daughter on the spectrum. Plus 4 other children that are not. Life has many bumps and bruises. It is what God gives us that make us stronger. His love and Patience. I have many days where I just curl up and say not today..But, it’s those days I learn the most. My journey began 2 yrs ago and I only look forward to the rewards that She brings me. Sarah keep your head up and smile knowing that we as a community Love you. There are many of us out there that are willing to help. Thank you for your bravery and honesty. Love< Kelly..Another Auttie mom. : )

  8. Wow! Gotta tell you it is REALLY comforting to know others feel this way!Thank you so much for sharing your story!
    Deb Davi
    Mom to 3 ASD kids out of 5

  9. Sarah, your blog entry touches me very much. There are so many things left unsaid, unexpressed, buried within the heart & soul of a parent coping with this mystery we call autism. We have 5 children , one with autism. My son, Noah, will be 6 in April, and while we have 2 teenagers and 2 younger children, it is difficult for me to remember back to when life was “normal” because for the past 5 years, it has been anything but. The sacrifices and daily energy and work involved in caring for a child with this disability are enormous. Sometimes I feel so alone in this struggle. It helps me just to know there are others out there coping the same as myself. I believe whole-heartedly that God entrusted me with this task and that these are very special children and people that are born closer to God, more pure of heart, more not of this world than we are…. I thank you for your strength and bravery as it gives that energy back to all of us Mom’s that want the best for our kids and are searching daily for that strength it takes to do this special job.

  10. Thank you for your blog. I have an almost 4 year old son with Autism. I’ve always wondered if people feel the same way I do. I have the jelous moments and just feel trapped sometimes. Just know that you are amazing!

  11. Wanting to thank you for writting this. It is hard as a mother of one child with autism, I have learned to overcome the way the world reacts to me and my son. It is overwhelming somedays, and it does get better. However, I hurt and its was easier to just stay home but i have turned the ignorance of others into advocating for him and for me and it’s made all the difference in the world. I don’t quite know where it’s going to take me, but I hope one word will help another…so big hug to you as you are not alone!!!!

  12. I wrote this to show someone where I was coming from regarding the treatment of Gary McKinnon – It’s a dip into the story of my growing pains living in a society with an as yet still undiagnosed .. something.. http://agarymckinnonsupportsite.blogspot.com/2010/03/never-be-madman-especially-when-you.html – My mother, a good loving woman, had the same feelings about me when I was growing up. I am just about to write about it. I think. Good luck and lots of love and good stuff in all your lives – as and when life permits (-:

  13. I agree, beautifully written. I teared up reading this article because, even though I only have one child with autism, I relate so much. I am one too that puts on a very easy going facade. Like you the truth is I am so jealeous of others. With my oldest son we could just ride to the beach and have a day of playing and fun. Now that is just to much of a battle. I have a nonverbal 3year old high energy runner. My chest hurts sometimes thinking about what it would be like to be able to go to the fair or even just church functions without leaving Mason with someone. I know he doesn’t enjoy crowds and that it would be too much stimuli for him to handle, but still not to deprive one child, I have to leave one behind. Some people just don’t understand and will say, “don’t worry he will be fine”. They just don’t get it. I love the way you spoke the truth. It is true that we are blessed to have Mason,I love him so much, we have learned so much about the important things in life from him but, I always wonder what it would be like if he wasn’t autistic.

  14. I can relate to every word you say. I too have 2 kids with classic autism. I have many of the same feelings. Stay strong & remember what a wonderful mother you are.

  15. Sarah, you step away whenever you need to. And you don’t have to share those feelings. Whatever it takes to keep whatever serenity and sanity you have, do it.

    I have to bite my tongue whenever relatives tell me to try some new kind of diet for her, fix her gut, try some pill, etc. to get her cured. I have to bite my tongue to keep from screaming at them that she won’t be cured. Ever. And my heart breaks each time. To multiply that by two…well..I have a tough time even trying to wrap my brain around what you deal with each day.

    I spoke with you one day in fall right outside of the school as we waited for our kids to get out of ECK. My daughter had not yet been medically diagnosed, and you told me to start with that, and then move forward from a diagnosis.

    In December 2009, Charlotte was diagnosed at the University of Chicago children’s behavioral health department with Asperger’s Syndrome. I thought of you that day, knowing that this was where we begin.

    Erika, Charlotte’s mom (morning ECK)

  16. First I would like to tell everyone that is dealing with a child or grandchild on the Autistim Spectrum, God has chosen you to raise these precious angels because he knew we could do it, so keep your head up and know that you are doing a super job, I have a grandson 10 years old and we have been working with him since we found out at age 3 that he was autistic,, EARLY INTERVENTION is the thing that will help you most. My grandson has done wonderful, but it has been a battle some days, especially when the meltdowns were in the early years so bad, He is in the 3rd grade and is still not as mature as he could be for his age but he is doing great in school , he is making good grades and for all of this we thank God. I sit and wonder sometims what goes on in their minds especially when they want to be alone, and my tears start flowing, I would love to be able to take these precious children and HUG it all away, but we just have to keep going. I get accused all the time of being too easy with the grandchildren , but all I want to do is watch them grow and see this little guy improve more and more, and every little thing he does one day that he has never done before,just warms my heart, well I could babble on all day, but I leave you all with this thought, Keep your head up, Know that you was chosen because someone else could not have loved your child as you do, and know that God never puts more on us than we can handle…..HUG your children every day, and tell them you LOVE them. GOD BLESS YOU ALL!!!!!!!


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