Home > In Their Own Words > In Their Own Words – Experience Breeds Ability

In Their Own Words – Experience Breeds Ability

This ‘In Their Own Words’ post is by Susan Senator, a writer, activist, and the mother of three boys. Susan is the author of “Making Peace With Autism,” and “The Autism Mom’s Survival Guide.” Please visit Susan’s website for more of her blog and other resources.

I was looking for a place to toss a shovelful of snow that I’d just dug up next to the car when I thought about Nat.  Nat was still at the group home, but we had told him that as soon as the snow stopped and we were dug out, we’d come get him.  I threw the snow right or maybe left — we are really running out of space and the drifts bordering the driveway are about five feet high by now — and I imagined Nat and his brothers shoveling.

We are all really good at shoveling these days.  I pictured handing the shovel to Nat and seeing him push it down and push the snow aside.  No problem. But it used to be.  Such tantrums!  He couldn’t be outside with us.  And if we left him inside, he’d freak out in there, watching us working outside.  The horrible feelings I had, knowing I couldn’t be inside or outside.  There was no place to go, no place to be on this earth because my child was so unhappy and he could not understand what was going on.

Now he shovels snow willingly and competently.  Yet another skill, another feather in Nat’s cap.  How did this come to be?

We made him do it anyway.  We lived through tantrums.  We had shoveling (shopping days, movie outings, parties, holidays, vacations, meals, sleepless nights) days that ended badly.  Nat has been exposed to a lot of activities.  It’s as simple — and difficult — as that.  The more Nat experiences, the more he is able to do.  As soon as we realized that we needed to familiarize Nat with as many things as possible, we started to take him out, make him be around people and go to new places.  It was almost always really, really hard.  We tried a Cape Cod vacation:  terrible.  Each year, not as much.  Stayed with my parents:  it got better.  Switched to the ocean, rather than the bay side and brought boogie boards:  success.  Still difficult, because he walks in circuits and ends up too close to others’ blankets. But still, we enjoy ourselves for a lot of it.  Not all of it, but enough.

Challenger T-ball; failed.  A year later we tried Special Olympics gymnastics: success.  But bumpy success.  Nat sometimes slapped people or had tantrums or spaced out.  We stuck with it.  Or rather, Ned did.  I’m the coward of the two of us.  I find out about stuff and dream things up, but Ned very often ends up following them through. You gotta have at least one parent who doesn’t mind people staring, or an occasional pinch.  I think that even if you are a single parent, you should find a way to have a second person around sometimes.

Vacuuming.  Food shopping.  Parties.  Shoveling.  We took Nat places.  Even for abbreviated visits and outings.  Because even if he had tantrums during the event or activity, it was becoming a part of his repetoire.  Stored data.  Information he could draw on for the next time.  If there was a tiny seed of it already there in his mind, no matter how sharp and horrible that experience had been, it was now lodged there, resting in his gray matter.  And that is the most fertile ground there is.

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

  1. February 18, 2011 at 9:10 am

    Thanks for this! It rings true with my family’s experience as well.

    • Lucy Gratz
      February 18, 2011 at 1:36 pm

      Yes everything you are saying was true with my daughter. I have stretched her every year of her life determined that if I saw it as “saving her life” and I only have this one time around to do it with no regrets I woud reap excellent results and. I can honestly say that even three years ago I wasn’t sure we would be closer to my long range goals, but I honestly feel that those goals are now within our reach if i just keep up with that stretching. She is a second year college student in medical office administration and all those activites and lessons indivivual and inclusion, and therapies, and planned playdates I believe when combined have been unlocking those mixed up connections in the brain and continue to build clearer paths for her thoughts and decision making. I can say I just never said never while there was a chance that the today we have now would truly come.

      • katherine
        January 24, 2012 at 12:03 am

        That is all fine and well. But if you do everything for your children they never develop or grow.

      • katherine
        January 24, 2012 at 12:08 am

        I am curious as to why the respondent to this article Lucy speaks as if her daughters plight is her own.
        My question would be whether or not her own daughters long range goals are in sync with her mothers obvious need to control the situation or the autism diagnosis.
        Anyone can go to school and get a degree or certificate but can her daughter actually function in the real world is more important.

  2. February 18, 2011 at 9:28 pm

    Susan,

    Thank you so much. Your words were my son’s story. I say “were” because … although Colt is still quite young (8 years old) … we were handed a gift/ a timing. Yes, Colt is challenged with Autism. We have been working with specialists and educators since he was 16 months old.

    A few months ago a study was published connecting Autism with a mitochondrial dysfunction. At the same time, the company that I just started working with launched a nutritional supplement that is specific to supporting and rejuvenating our mitochondria. As a concerned and hopeful mom, I immediately put the information in front of the companies lead scientist to see if this supplement would be safe and beneficial for Colt.

    Today, Colt has been on ageLOC Vitality for 76 days. We have our child back! Colt is PRESENT! Eye to eye contact, engaging in conversation, playing with other children on the playground, lessening of the flapping of the arms, tippy toe walking almost gone, tantrums are a thing of the past …. his world is in sync with ours. Colt is participating in his life. We are no longer prompting Colt.

    He knows that he has Autism and is working with us to make it “go away”.

    Is ageLOC Vitality the answer? Probably not. BUT it certainly is a missing piece of the puzzle for my son …

    I have been keeping a journal since Colt has started taking the Vitality. I would love to share it with you as I know in my heart that if something so simple can make such significant difference in Colt’s life … it can and will in so many others.

    God Bless,

    Stephanie

    You can contact me at: stephsstuff@hotmail.com

  3. Leanne
    February 19, 2011 at 2:26 pm

    Thank you so much for sharing…when I read about other peoples’ experiences, it reminds me that I am not alone in my efforts to help my daughter. I, too, have found that the more we take her to different places, the easier it gets the next time, because the “unknown” factor is lessened, and then she has what she calls “new and different memories”. We are going to take her and her sister to Disneyland this summer–we will start with the social stories soon–wish us luck : )

  4. February 19, 2011 at 4:33 pm

    I couldn’t agree more. Years of pushing ourselves and our child through things have been exhausting a lot of the time, but we are definitely seeing the benefits. And when we haven’t been able to manage a whole activity, a part of something or a modification is still a step in a positive direction. It all builds, and it all helps. Thanks for sharing your experience.

  5. Vonda
    February 21, 2011 at 11:15 am

    Thanks for sharing…I struggle sometimes with pushing my son to do things that uncomfortable for him. I think I am scared that it will devistate him and he will be traumatized; but after reading this it makes me feel better about it.

  6. Holle
    February 21, 2011 at 11:41 am

    I find comfort in this. MY 18 year old son has so many challenges. The most confining is that of hyperacoustic hearing. The sound of babies crying or small children screaming sends him running as it produces physical pain. His life is so restricted becuase, really, where can you go where there are no children. So, repeated exposure, data to draw on for the next encounter. We ALL want our kids to experience life to the fullest and to be happy.

    Thank you for sharing!
    Holle
    Boise, ID

    • February 21, 2011 at 10:20 pm

      Holle,

      I feel your words and frustration. When my daughter was born, her crying sent our son off into that very frenzy that you speak off. It was so bad that my husband and I had to hire someone to help me our with the children as he was gone most of the day (Colt was just 2 when Hunter was born). We could not go to restaurants, we could not have friends to the house with young children, we started walking a very fine line to accommodate Colt’s sensitivities, but were concerned about Hunter’s developement needing to have friends and playdates.

      Today Colt is 8 years old. Today and only very recently Colt is having friends to the house. Just last night Hunter had her little friend Vicky sleep over.

      I am giving credit to a simple supplement that we recently started our son on. It is a nutritional supplement that any of us can take … it supports and rejuvenates our mitochondria. The reason I know of this and we decided to try this with our son is because of a study Autism speaks published just before Christmas connecting Autism with a dysfunctional mitochondria.

      Now, I am going out on the limb and going to say it is the “hand of God” that put this information in front of me because at the time the study was published I had also gotten involved with a company that recently launched to the market the supplement that I speak of. Before September 2010 I would have had no clue what the mitochondria was or I would have said O.K. now what?

      Colt has been on ageLOC Vitality for 78 days today. We have our son back! Colt is PRESENT. His eye to eye contact is back, the flapping of his arms has gone away, the tippy toe walking has decreased, he is socializing, we can have children over to the house and he is not hiding in the back of his closet with the TV blaring … he is playing with the other children. He is participating. I know many reading this will think that I am just pushing a pill …. a year ago if I was reading my words I would probably be thinking the same thing …

      We have been keeping a daily journal of Colt’s progress since he started on the Vitality … I would be honored to share Colt’s journey, because I am one of the parents who does know.

      My tears today are from hope and the major strides my son has made. Our reality changed 78 days ago! Is Colt cured … no, but we are on the right path. He is now participating in his own life and no longer being prompted.

      I simply share Colt’s story because I know in my heart that if Colt can make such amazing strides … others will benefit as well.

      God Bless,

      Stephanie

      stephsstuff@hotmail.com

  7. Anita
    February 21, 2011 at 11:48 am

    Thank you for confirming that what I have been doing for 20 years isn’t in vain and I’m not alone. I still have no idea if my son will ever be able to live on his own. I do have hope that he won’t need 24/7 monitoring though.

  8. Brizeida
    February 21, 2011 at 11:52 am

    I am so glad to come across your story. My eight year old son too has Autism. When he was diagnosed at 3 years old I made it my mission to take him out and expose him to the world. I purposely take different routes to places we would visit everyday. When he started talking at about 4.5 years old he would say “no not that way” and start to have a panic attack. I would reassure him that the different route would take us to the same place, after awhile he was fine. I found that the things that would trigger a panic attack I put him in the same situation to get him use to it and let him know it was ok. For example when he saw the red light to the gas tank (empty) come on he would panic. I purposely would let it go red and explain to tell him “oh look we need gas, it is ok that just means that now we have to go to the gas station”. It has not been easy but I too have reaped the benefits of getting my son back. We started basketball a couple of months ago and the first weeks were difficult becaues he stood out with some odd behaviour. I got some stares but I survived. I am so happy to hear that I am not alone and hoooray for all you moms. :-)

  9. Anita
    February 21, 2011 at 12:31 pm

    You have to keep pushing! Our kids are only too content to live in their own world if they are not challenged to move beyond themselves. We have traveled by train, plane and cruise ship, none of which started out well. Once our son realized that his preconceived notions were not fulfilled he relaxed and enjoyed it. The year we went on a family cruise, he went straight to his cabin, turned on the TV and there was a story about Somali pirates going after a ship! Talk about timing and major panic attack!! Once we accessed a map and showed him that was on the other side of the world things got better, much better. Now he’s ready to do it again.

    He’s 17 now and looking forward to college and was just recently nominated for National Honor Society. He continues to learn most things through experiencing it, but he is not afraid to try any more and that’s priceless!

  10. Wendi
    February 21, 2011 at 5:04 pm

    This article really helped me, we are really shut off from life! We do not do things we know will upset our son. I know I need to try knowing I will fail and try again, but it sometimes is easier to hide in our home. Due to your article I am looking forward to camping, fishing, rafting and so much more!! It will not be easy nor fun at times but in the long run good for our son and our family!

  11. February 22, 2011 at 8:58 pm

    Our kids are only too content to live in their own world if they are not challenged to move beyond themselves.

  1. February 18, 2011 at 5:52 am
  2. February 18, 2011 at 10:00 am
  3. February 18, 2011 at 10:45 am
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  5. February 18, 2011 at 1:55 pm
  6. February 18, 2011 at 2:43 pm
  7. February 18, 2011 at 6:32 pm

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