19 January 2012 ~ 18 Comments

The Divining Dragonfly: My Journey With Autism (Part 1), by Cindy Caprio

Sarah: Back in December, I announced that we are welcoming aboard a new guest columnist. This is her first column … a moving account of her personal experience with autism. I know that this is something with which several of you can identify and I’m very happy that Cindy has chosen to write about this as I feel that it is a topic that lacks understanding and about which we desperately need to raise awareness.

Birth and infancy

A mother’s intuition is one of the strongest vibes I have ever experienced. When my beautiful baby son was born he wasn’t crying; they laid him upon my chest for a few seconds as he stared at me wide-eyed with his blue eyes and then the nurses swept him away. I was so nervous that he wasn’t crying – was there something wrong? It turned out he was a very healthy 8.7 pounds. As the nurses were taking his vitals, they continued to comment on how alert a newborn he was.

The two days he spent in the nursery, the staff nicknamed him “little Houdini” since he always managed to make his way out of those nicely wrapped and snug swaddles. I also remember a comment from the pediatrician, telling me how amazed he was at how alert and inquisitive my baby was in comparison to the others in the nursery.

Breastfeeding was a nightmare for both of us. I was persistent, but he wasn’t. He was uncomfortable at every possible angle, continuing to cry and refusing to latch. I tried my best when the doctors recommended I supplement with formula as well since he wasn’t doing so well with the breastfeeding. He wasn’t interested at all in being held and fed. Every time he finished a bottle, his knees would go to his chest and he would cry in agony – his digestive system was not happy at all. The feeding problems continued for a couple of months, I pumped my breast milk and we must have changed formulas and bottles about a dozen times. We finally seemed to manage his gas pains with a soy formula and a specially designed bottle to stop gas bubbles from forming in the bottle.

We were at the hospital being dismissed, I had my baby in my arms and he was screaming so loudly – he just cried for what seemed like hours while I was waiting for my husband to get the car ready for us. I tried everything – rocking him, singing to him, walking him around, swaddling him, even feeding him a binky (pacifier/dummy). You name it, I tried it … and nothing worked.

Once he got home, he was a very cranky, colicky baby. The only thing that would stop him from crying hours on end would be those “Baby Einstein” videos. He was mesmerized by all of the funky lights, music and colors.

He chose not to co-sleep or to sleep in his cradle; he was actually turning himself onto his side and stomach. During the first few days of being home, we tried a wedge inside his bassinet and that didn’t work. After becoming afraid he would smother himself against the wedge or turn on his belly and die of SIDS, we discovered he got his best sleep during the first six months when placed in his car seat next to my bed.

When the pediatrician told us it was time for the crib, we cringed. We were unsure of how this would go, but it worked out beautifully. The only strange thing was this six-month-old baby learned how to make his way from the head of his crib to the foot of his crib during his sleep. “How did he do that?” my husband and I asked each other? After finally catching him in the act, he learned if he could bring both of his legs up and slam them down onto his mattress, he could move himself. This became a “regular” thing for a very long time. He always loved his crib, and from that point on he finally became a good sleeper.

I had always noticed “quirky” things about him, but didn’t think it was anything to be concerned about just yet. He wouldn’t play very much. He didn’t like to be held. He became fixated on spinning objects and lights. He seemed happy in his environment. However, once he was taken out of that comfort zone, that’s when things would shift.

He started the “terrible twos” at 18 months, had no words and would grunt and point if he needed something. If I couldn’t understand him, it was so difficult and frustrating for myself and for him. He would hit, bite, throw fits and cry uncontrollably due to his inability to communicate. I stayed home with him, trying to do the best I could – I knew this would give me the opportunity to get him around other children. I was also hoping that I would meet other stay-at-home moms whom I could communicate with. I felt so sheltered.

From infancy through age two, I persisted on taking him with me to several classes such as, “Mommy and Me” exercise and play centers, “Tots ’n’ Sports”, music, story time at the library. I just couldn’t get him to be interested or to interact like the other babies; he was always “different” and never wanted to participate. I would always leave with him crying and screaming at the top of his lungs. At the time I didn’t know why he was crying … all the other babies were having so much fun giggling and bonding with their moms, and here I was with an unhappy, crabby baby. I always left early, feeling like “that mom” and so isolated that other moms wouldn’t want to friend me because of my child and his social delays. I would leave crying once I left the building. I would cry all the way home, so depressed and no answers to what was going on. At the time he wasn’t diagnosed yet and I didn’t dare mention my son’s “issues” to anyone. It was something my husband and I kept to ourselves as we figured he was just colicky and would grow out of it.

 

… to be continued …

 

You can read Part 2 of this article here

 

18 Responses to “The Divining Dragonfly: My Journey With Autism (Part 1), by Cindy Caprio”

  1. Sarah Downing 19 January 2012 at 2:49 pm Permalink

    Hi Cindy,

    Welcome to Butterflies & Phoenixes and thank you for this phenomenal column. You truly are a talented writer and it was a pleasure to edit this article, although I must admit that it actually made me cry. For a long time I’ve been wanting to feature autism as a topic as there are so many autistic children out there and so little is understood about it. It saddens me that many autistic mothers feel so alone and I’m glad to know that there are online groups such as the Facebook group Sisterhood of the Autism Mothers (http://www.facebook.com/groups/54161751269/).

    Thanks again for writing this. Looking forward to Part 2!

    Love,

    Sarah

  2. Cindy Caprio 19 January 2012 at 8:56 pm Permalink

    Thank you Sarah for giving me the confidence to go forward with my writing. Part one was a very emotional piece to write, it really had me go to a place that was forgotten. I hope to educate others with my personal experiences as a mother of a child on the Autism Spectrum. Autism is misunderstood in so many ways I am amazed by all of the myths out there and I hope to put some of those myths to rest. Autism diagnosis are on the rise – 1 in 110 are diagnosed in the United States and 1 out of 70 are boys. One most important thing to remember is each child with Autism is different – a piece of a puzzle – when you meet one child with autism you have met one child with autism.

    • Sarah Downing 19 January 2012 at 9:58 pm Permalink

      Hi Cindy,

      You truly have a talent and I am happy that you are being so generous as to share your experiences with the members of this site.

      Keep up the good work!

      Love,

      Sarah

  3. Lori 19 January 2012 at 10:44 pm Permalink

    Really good writing Cindy! It sure brought back memories of TLC as a baby. I had almost forgotten about him sleeping in the car seat but boy do I remember how strong and alert he was right after birth. I remember it like it was yesterday, how wide-eyed and strong, and so alert, he seemed to know what was going on. He is wise beyond his years and has come a long way! I know how lonely it can be when you know something isn’t right and think they are “different” somehow but have no answers yet. No matter how old they are you never forget those times when you felt lonely and helpless to help them. It appears that the early intervention programs that are in place now have lessened the years parents and their children have to go with no answers or help. They didn’t have what they have available now when mine were little, so it makes me feel good that things have improved over the years; parents have answers sooner and there are resources the kids need and deserve. That said, I know it’s not always easy and parents still have to advocate for what their kids need and deserve to get a good education and continue to thrive to their potential.

    You are doing an awesome job and he’s an amazing kid! I will be on the lookout for part 2.

    • Sarah Downing 20 January 2012 at 1:09 am Permalink

      Hey Lori,

      Thanks for commenting. I know that you know TLC personally. He looks like such an amazing little boy and autistic children do seem very special in many positive ways although sadly it seems that many people just fail to understand them and this lack of understanding leads to fear.

      It saddened me when I heard how very alone Cindy felt having to deal with this. I certainly hope that things have improved today. I know there are online groups on FB and the like and that must really help. I think the Internet has proved helped for a lot of people in this respect.

      Talk to you soon!

      Love,

      Sarah

      • Cindy Caprio 20 January 2012 at 6:04 pm Permalink

        Lori thank you for commenting – I think you are the first person that I mentioned to regarding Thomas possibly being on the spectrum. You were so supportive (and still are) and I am glad to hear someone so close to TLC recognize how many leaps and bounds he has made since he started with early intervention. I agree with you regarding parents advocating for their children and helping them along to reach the fullest potential that they are capable of.

  4. Janine 20 January 2012 at 12:18 am Permalink

    I am a Hashimotos patient and am doing some distant work with a healer in California who is skilled in the use of the(Svetlana) Masgutova method that deals with autism. It sounded promising. Have you heard of it? I was curious about her background, so googled her, and found it(both Diane, my healer snd Svetlana) really interesting.

    • Sarah Downing 20 January 2012 at 1:07 am Permalink

      Hi Janine,

      Thanks for commenting. I let Cindy know about your comment and I’m sure she’ll get back to you soon:-). I hope you are doing well with your healer and wish you luck and lots of progress with your health!

      Cheers,

      Sarah

      • Janine 20 January 2012 at 1:20 am Permalink

        Thanks so much, Sarah, and you, as well! Thanks for your good work here… Lots of solutions to be tried and found…

        • Sarah Downing 20 January 2012 at 1:41 am Permalink

          Thank you, Janine. Glad you like the site. Hopefully it is helpful to you:-).

      • Cindy Caprio 20 January 2012 at 6:08 pm Permalink

        Hi Janine – I haven’t heard of that method but I am interested in learning more about it. I would love for you to forward me some information and I will do some online research as well. Meanwhile, wishing you well and lots of sucess with your healer.

        • Janine 20 January 2012 at 7:35 pm Permalink

          Hi Cindy, I haven’t spoken to my healer Diane about it, but there is an extensive website dedicated to the Masgutova method if you look it up. When I googled Diane, she was grouped together with a few other healers and medical professionals who use the method because it yields exceptional results. I believe Svetlana is based in Poland, but there was a thread of a discussion somewhere which suggested that one could spend time working with her there quite reasonabl, although I assume she also spends time in the U.S.. Also, you can train in the method yourself, although I am sure you have by now discovered this information yourself. Diane is based in California, and am happy to put you in touch with her if you like. The other healing she practises is called Shafaw, under the tutelage of Master Danadoost, which is what I am having, and finding it effective, although naturallly not an instant cure for everything. My heart goes out to you, Janine

          • Janine 20 January 2012 at 7:39 pm Permalink

            Many thanks for your wishes!

  5. Janine 24 January 2012 at 12:42 am Permalink

    Hi Cindi,
    I have been in touch with Diane Whiteside, my healer. She says she would love to share info. On the Masgutova method. I will forward her this link. I am not sure where to post personal emails.
    Janine

    • Sarah Downing 24 January 2012 at 12:46 am Permalink

      Hi Janine,

      Thanks for that. If you like, I can put you and Cindy in touch with each other by email. Your email is visible to me as the moderator of this site and, if I have your permission, I will pass it on to Cindy. Alternatively, feel free to contact me via the information you will find in this site’s Imprint.

      Cheers,

      Sarah

      • Janine 24 January 2012 at 1:43 am Permalink

        Thanks Sarah, that would be great if you could forward my email to Cindy, Janine

        • Sarah Downing 24 January 2012 at 9:54 am Permalink

          Hi Janine,

          No problem. I just sent Cindy an email with your email so that she can contact you when she gets time.

          Cheers,

          Sarah

        • Cindy Caprio 25 January 2012 at 8:37 am Permalink

          Hi Janine – I have your e-mail and will be in contact soon.

          Thank you 🙂


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