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Meet Abby J.

Capes that Care for National Autism Awareness Month

With National Autism Awareness month just around the corner, we are excited to launch our new Capes that Care campaign featuring an amazing mom, Abby J., whose son Jack was diagnosed with autism close to a decade ago. Since Jack is now 10 years old, that decade of living with autism has made him and his mom an incredibly amazing pair. They have learned so much through trial and error and are now ready to share their story with others. Moms are often perceived as heroes by their kiddos for a multitude of reasons. Abby’s story, which demonstrates a new level of patience, endurance and hope, will undoubtedly show you why she is a hero to her son and so many others.

Autism is the fastest growing developmental disorder. It impacts the normal development of the brain in the areas of social interaction, communication skills, and cognitive function. Individuals with autism typically have difficulties in verbal and non-verbal communication, social interactions, and leisure or play activities. Autism now affects 1 in 68 children and boys are four times more likely to have autism than girls. About 40% of children with autism do not speak. Autism greatly varies from person to person (no two people with autism are alike) and therefore trial and error and perseverance are key in finding treatment.

Abby is a mother of three handsome boys. The oldest of them, 10.5 years old Jack, was diagnosed with Autism when he was a toddler.

Abby did wonder at times if there was something unique about Jack’s behavior but despite these early warning signs, the pediatrician deemed Jack’s behavior as “playful and spirited.” It wasn’t until the family moved to the Madison area and had access to The Waisman Center, a pediatric development clinic, that Jack was diagnosed with autism.  His was a unique case in that he exhibited many signs of Aspergers Syndrome, but his early language delays, and a few other symptoms led four different doctors to settle on an Autism diagnosis. The lead doctor at Waisman advised that they treat the symptoms that troubled Jack (sensory issues, toileting issues, anxiety issues, hyperactivity, etc.) separately rather than tackling the condition as a whole.

Please take a few minutes to learn about Abby and her emotional journey.

SAMIMAY: What resource did you find most helpful after Jack’s Autism diagnosis?

Abby: As anyone in this digital age, we were inundated with countless books/doctors/therapies/pills which *could* help. It took a few weeks to decide where to start. In my searching, I had come across The Feingold Association, created by a physician in the 1970s. Feingold researches additives in food and the effects those additives can have on humans, mainly children. Getting rid of all artificial colors, flavors and preservatives from our meals seemed a daunting task on top of having 3 kids in diapers and all our other daily challenges. But I rationalized that it wouldn’t cost much and I couldn’t come up with a single source to suggest that taking food dyes out of my child’s diet could be harmful. So we started there.

At first glance it seemed we could just read labels to help clean up our diet, but I learned food label laws still allow for some fibbing as to what is actually on the ingredient list. So we ended up joining the Feingold Association which gave me a shopping guide with thousands of foods that were guaranteed safe. We relied heavily on that book for our early Feingold grocery days! I will never forget the day I came around the corner of the grocery store and saw another mom shopping with her book. Instant connection! But more importantly, I had access to thousands of other Feingold families across the US and beyond whose kids were also struggling through their days. Whose kids were finding tremendous success in a shift towards more natural foods. 

To say our family found success would be a wild understatement. Jack’s raging fits started to subside. He let me cut his hair. He asked for socks and cookies and Curious George. He slowed down. He slept past 5 am. And on day four, he looked at me and for the first time in his life told me he loved me. 

We never looked back.

Feingold definitely did not cure Jack’s Autism, but it took all of the unnecessary emotion and rage away from everyday tasks like choosing a cup, getting dressed, walking through a store, etc. 

It opened the door for him to be able to tolerate the lengthy treatments and therapies that consumed our next two years. It allowed him, over time, to verbalize what he didn’t like about wearing socks or hearing loud noises. And that dialogue really helped his therapists fine tune their time together and help him finally feel better.

SAMIMAY: How did Jack’s Autism change your outlook on motherhood?

Abby: Pre-diagnosis, I didn’t feel like much of a mom at all. I felt like a frantic person living with a child whose behavior made no sense yet took 95% of my energy. I was racked with guilt about not spending enough time looking at my other two sons. But right after his diagnosis, when Jack started doing well in therapy, a beautiful calm and confidence arrived. I was easily able to toss out my pre-conceived plan of what time with my kids would look like: Cross off Disney. Replace with Colorado hikes. No to the Children’s Museum. Yes to long afternoons painting our driveway with water soaked paint rollers. No to organized gymnastics classes. Yes to vacuuming the sample carpeting at Sears for as long as they’d let us. And it was all just absolutely fine. Honestly, I think our shift to simple family-oriented activities was exactly what we needed to repair the stress of those first few years. 

SAMIMAY: What are some of the challenges you go through when caring for Jack?

Abby: Jack’s early years were easy on no one. He didn’t sleep for longer than a couple hours at a time (for over six months!). He ran away at parks, at stores and from our house. He was obsessed with non-toddler-approved household items like lawn mowers, vacuums, springs, strings, door locks, etc. He didn’t feel pain and would cut himself on sharp corners and vents over and over. He never looked at me. He refused toilet training for quite some time and was still in diapers when my second and third sons came along.  He also did not tolerate haircuts, or nail clippings or wearing weather appropriate clothing. The daily screaming sent my two younger boys into their own fits of anxiety. And on the few occasions we had a house guest, the raw emotion in those outbursts made each of my house guests cry. The hardest part of all of that however was being alone with it all.  My family did not live close, he was not yet in school, my husband worked long hours and I had no friends within 3 hours of my house. It was very isolating.

But that was then. Jack is 10.5 years old now and the challenges of getting him dressed and groomed are long gone. We are no longer drenched in therapies and protocols. Now we deal with much more typical things like managing homework, building friendships, expressing himself and repeating, “NO! You cannot have a cell phone yet”! 

Oh, his Asperger’s side still shines bright. His speech is formal, some motor tics come and go, he loves to repeat things he has heard and he still loves vacuums so much he dressed up as James Dyson for inventor day. He perseverates on inanimate objects and he really hates last minute schedule changes. But he understands when his brothers say, “But I don’t want to talk about your new wireless keyboard anymore”. He is (mostly) able to hear no and move on. He is comfortable in his own skin and clothes and environment. He is happy and able to talk about his day and thoughts and worries. And that has made all the difference.

SAMIMAY: What experience/wisdom would you like to share with other mothers of children with Autism?

Abby: First, I would have to say trust that little voice inside your head. You know the one. It’s the one that whispers, “Do it!” or “Buy the shoes!”. Sometimes it whispers less fun things like “Autism” or “Something is not right”. Listen to that voice. It’s almost always right on. 

Second, if you find yourself staring an Autism diagnosis in the eyes, do everything you can! Different strategies work for different kiddos and if you don’t try them, you’ll always wonder! We hit dead ends with DAN (Defeat Autism Now) doctors and extra supplements. But we had huge success with occupational, behavioral & speech therapies. And of course, our biggest success was with diet changes. I have friends who experienced the opposite! Make your list and work your way through it until you find the right solutions for you and your child! 

And last, be kind to yourself. Of course you will spend many nights face deep in your computer. You will forget your spouse over and over again. You will lose or gain weight or stop talking to friends. But those days will subside. And when they do….Put on those shoes that little voice in your head made you buy and do a few things for you. Find your new normal and run with it!

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We are honored to feature Abby on our blog, and as a thank you we’ve sent her one of our capes. Because #EveryHeroNeedsaCape.  Additionally, in order to commemorate the National Autism Awareness Month, we will donate 50% of our online sales to Feingold Association as they provided life changing assistance to Abby and Jack in their battle with autism.

Thank YOU for reading! Thank you for considering making a donation! Through April 30th, SAMIMAY will donate 50% of all online revenue to Feingold Association.

 

To learn more about autism, please see the below links:          

http://www.autism-society.org/

http://nationalautismassociation.org/resources/autism-fact-sheet/

 

Thank you,

SAMIMAY Team