Home > In Their Own Words > In Their Own Words – Good Days and Bad Days

In Their Own Words – Good Days and Bad Days

This “In Their Own Words” is by Dorie Deebold, a mother of two children, one who has autism.

Our three-year-old son Pierce has autism – and we try our best to plan routine family outings for him and his older sister that we will all enjoy.

As is typical in any family, there are good outings and not-so-successful ones. For me and my husband who are relatively new to this strange new world, it is increasingly difficult to determine what outings will be a great success, and which may prove difficult for Pierce to navigate.

Before school started this year, we wanted to take a trip to Sesame Place.  Knowing how Pierce and his older sister loved the Sesame Street characters, and armed with the confidence that Pierce had experienced water parks this summer with success, we were all excited for a fun day.  However, this particular outing  would prove to not be one of Pierce’s best.  Something about the venue did not work with Pierce’s sensory system on this date, and it was a continuous struggle as we worked through the day of meltdowns, flopping on the ground and the consistent screeching of “We. GO.  HOOOOOOOMMMMMMME!!”

As difficult as it was, we were determined to stay and allow Pierce’s sister to enjoy the Park.

Late afternoon came; while Dad and sister were adventuring on rides, I tried to coax Pierce into his bathing suit to try a small water park – which generally he would love.  But the sand on his feet, the swim diaper, the direction we chose to walk there – everything seemed to be sending him into sensory overload.  It was all too apparent that he could not adjust to this environment today.

I found myself questioning again on this afternoon (knowing full well how non-productive this line of thought can be):  Why?  Why, why, WHY can’t he tell me?  Why can’t he tell me why this day, this place,  this particular routine was so hurtful.  What was it?  The music? We’d been to a festival with bands and he danced the day away just weeks ago.  The crowds?  It was no more crowded than the boardwalk was last weekend.  This mystery of why.  Times like these, I desperately wished to get in his mind to see the world from his eyes, to try to unlock this puzzle.

So I retrieved a sobbing Pierce from his curled-up position and wrapped him tightly in a towel. We found a lounge chair in a quiet area by the “Mini Tidal Wave Pool”  and both relaxed.   I  sat there whispering to Pierce how much I loved him, and how proud I was of him for all the work he’s done. Sitting there on a beautiful September day, watching all of the children play, I closed my eyes and felt us both relax from the high anxiety of the day. And we slept.

When we both woke up, Pierce looked up – dazed and tired – and smiled the first smile of the day.

“Pierce, do you think we should head home now?”

“Okay, Mommy?”

And off we went to find Dad and his sister.

Good days and difficult days – I reminded myself.  And we can’t appreciate the one without the other.

“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. Brenda Klump
    September 16, 2010 at 3:01 pm

    My son wasn’t diagnosed until he was 9. Right before he was diagnosed we went on a trip to Disney. Everything was going good in all the parks. The day we went to Animal Kingdom I thought would be the best day of the trip because my son was so obsessed with animals. Boy was I wrong!!! The day was so stressful for everyone! He ran away from us in the busy park and it took us a long time to find him. I didn’t know at the time that he had Aspergers. If I had it would have completely changed how I handled the day.

    I so understand the frustrations. I look back on the pictures of the trip and still don’t understand why that one day was so tough and the rest were ok.

    Keep reading and learning, that’s what I do to get through some days with him. He is now 15 and I adore him more and more everyday and with constant support he is learning his special condition!

  2. Dawn M.
    September 16, 2010 at 3:08 pm

    There are tears in my eyes as I feel his anguish and yours on that day. Our family has been in that place, physically and emotionally, many times – even this week. Please know that you are not alone.

  3. Cathy
    September 16, 2010 at 3:32 pm

    As a mom of 4 (one with autism) I applaud you for trying to find something for everyone in your family to enjoy together.

    Thank you for sharing your story and Pierce with us.

  4. Katie wright
    September 16, 2010 at 3:41 pm

    I am really sorry you had such a difficult time. It sounds like Pierce experienced sensory overload- too much going on, too loud. You would know best.

    Those moments are so hard. My son cannot really speak and we often have “bug out” of activities when things get bad. We are grateful if the 4 of can have a quick meal together at a diner.

    Keep trying!

  5. September 16, 2010 at 3:47 pm

    What a great set of parents you are. It’s so hard to balance everyone’s needs, and so frustrating to wonder why the overload is happening. You did the best thing you could do…relax. I had similar problems with my son. Now, he is an adult, finding his way in the world. People know so much more now than when he was little. Keep cherishing the good times.

  6. September 16, 2010 at 4:01 pm

    I am an adult with autism, but even I cannot always explain why outings are good one day and bad another. Sensory overload can fluctuate, and so can anxiety.Tiny changes to routines or tiny frustrations can also set off meltdowns on some days but not others.

    • Laura
      September 17, 2010 at 12:03 am

      Astrid…Thank you so much for writing how you feel as an adult with autism. My grandson is just 2, almost 3, and he doesn’t speak.

      I love every fiber of him just the way he is, but I do want to know what is going on. He studies things so intently, but then will just take joy in dancing to music.

  7. September 16, 2010 at 4:06 pm

    We just found out that our three year old has Autism. We are going through the same thing. Good days and Bad days. We r taking it one day at a time. May God Bless our Children with special needs.

  8. Denise
    September 16, 2010 at 4:10 pm

    As a mother of an eight year old boy with autism, I have experienced this many times and you did the best thing possible by wrapping him up and holding him close to you because they need to feel that sense of calmness while the world around them feels so out of control. You may be new to this but it sounds like your instincts are right on! You should be very proud of yourself.

  9. John Lemansky
    September 16, 2010 at 4:59 pm

    I know this feeling. My daughter Gracie was diagnosed at a very early age. She is now 9. Some days I would give anything for a simple answer to a simple question I ask her.

    No wisdom here. Just a Dad. With feelings like yours.

  10. Tamara
    September 16, 2010 at 8:57 pm

    I too have a three year old son with autism. He was diagnosed almost a year ago.I feel like our sons are very fortunate to be diagnosed so early. Although I am a single mom, I am blessed to have a much older daughter that just adores her brother. We have days like this as well and all you can do is stop what you are doing and give them that cuddle time or what ever works best for your child. We often sit and rock in the strangest places, but living in a small town, people know and accept him for who he is. They understand that we just need a chill down time and it can be anywhere and at any time. The new people that get to know him can’t help but love him like we do. These wonderful children are truly a blessing and can change how people look at the world. Cherish him deeply and remember that there are many good days to come. You are doing a great job.

  11. Larelle
    September 17, 2010 at 12:13 am

    My daughter wasnt diagnosed with aspergers until almost 9. before that going anywhere and doing anything was always a huge gamble-would she cope today or play up. we didnt know what the problem was so it was assumed by many and myself that she was a naughty, ungrateful, uncooperative child. eventually i just stopped trying to do things with her and her sister because i couldnt cope with the stares when my big for age 7 or 8 year old, was having a melt down. i could feel the stares and embarrassment as i tried to calm her down and eventually having to leave and being disappointed and angry that we all had to miss out because of her behaviour. if we had an answer so much earlier a lot of this frustration and anger could have been avoided.
    she is 10 now and i still get worried about taking her places as she is still very unpredictable. it is difficult to remember in the moment that she has very little control over those extreme emotions. i will take each day as it comes and hopefully they will be mostly ‘good days’.

  12. Ree Ginyard
    September 17, 2010 at 12:22 am

    I so feel where you are coming from. Sometimes you get so excited to take your kids somewhere thinking that they will love it but it turns out to be a huge mess. Then there are those WOW days. Most times just holding my 4 yr old son’s hand and walking around a store is huge challenge but the other day he just held my hand and walked we me. It was the best. Thank God for those moments.

  13. Rosa
    September 17, 2010 at 3:47 am

    Thank you for sharing…I have experienced this many times and it can be difficult for the whole family. You handled it very well, and I was thinking I would have done the same. I always get the “Go home now” as soon as we get somewhere my son doesn’t want to be…once I hear those words I know we are in for a difficult time.
    But for the sake of trying to have family time with Dad, him & his older brother we take many chances of going on outings because we never know which one my son will enjoy.

  14. Barbara
    September 17, 2010 at 9:52 am

    Thanks for sharing! I too have experienced this numberous times. My son is now 10 years old. It does get a little easier but it is still hard. Great job with your instincts in just holding him close to you!!!

  15. Laura
    September 17, 2010 at 10:34 am

    Wow! I do understand. I took my son to Sesame Place a couple years ago. Take your son places, but be prepared for anything. Our children are wonderful and unpredictable!

  16. Michelle Roberts
    September 17, 2010 at 3:00 pm

    Thank you for sharing your story. My nephew was diagnosed with Autism at age 3 and is now 6. He just learned to talk when he was 4-1/2 years old. When we all found out that Alex was Autistic, I took it upon myself to help my sister and Alex no matter what. He too, has his good days and his bad days. Just 3 weeks ago my sister called me crying and when I rushed to her side, she had told me that the local school had pretty much told her that there wasn’t a “spot” in the school for Alex. The teacher had sit Alex in a empty room by himself because she felt he was a disturbance to the class. She would try to get him to take a nap when he had just gotten to school 30 minutes prior. My sister had no choice but to look into another school, but they too said “No room for him”. As my sister sit and cried, Alex came to me with a toy and I smiled and fought back tears. He then said “Alex, no more school.” I knew right then I had to do something! The next day I was on the phones at 8am with the school, the dept of special education, and also made contact with the board of education. Throwing words in their face such as, No Child Left Behind Act, IDEA, American’s with Disibilities Act, discussing how his IEP was not being met what so ever, and so on, this had really gotten the schools attention. TWO HOURS LATER, my sister calls me with tears of joy stating “I don’t know what you did, but you did it!” Within 2 hours Alex had a school to enjoy and his very own aid to ensure his IEP is met. He is in a room with controlled children and loves riding the bus.
    You are not alone and we completely understand. You keep your head up and your child is beautiful and will always conquer all obsticals that may come his way. Keeping your family in my prayers!

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