Autism Does Not Win
Today is Saturday February 3rd, and my heart is hurting. Autism has taken over my son’s brain today. The autism trigger? The number 9, or shall I say isle 9 in the grocery store, and all odd numbered isles. I am determined to not let Autism win, but admittedly, there are many days like this one, it can tear at my heart, while wearing me down physically and emotionally.
As Ethan bites down on the palm of his hands to engage in self-injurious behavior, I go into help mode. I am failing though in my attempt to calm him, and everything I have been taught such as reward boards, redirect, & sensory input, is all not working. As Ethan continues to cry and tantrum louder he shouts over and over “you hit delete for number 9.” As a parent you want to fix everything for your children, make their world happier, but I cannot remedy this. The number 9 is here to stay, and it can’t be erased.
It has been 4 years, when just over the age of 2 our son Ethan was diagnosed with autism spectrum disorder & a host of other ICD 10 codes we had never heard of. It sometimes feels as raw as it did that day when we were told our son will possibly need a lifetime of assistance, and might not ever talk. Unlike other disabilities, no two children with autism present the same, there is no medication to help or remedy autism, and it is a lifelong disability.
Dr. Hugh Bases, of Developmental and Behavioral Pediatrics, encouraged us to get services from early intervention, & channel our energy into getting Ethan the support systems in place he needed. Early onset ABA (Applied Behavioral Analysis), is a proven method that can work in helping children to talk, and understand the world around them. We secured CPNJ (Cerebral Palsy of North Jersey), who assigned three full time therapists to work with Ethan 7 days a week, 4 hours a day, where he would receive speech and ABA therapy. In 3 months Ethan learned to point, utilize sign language, and then 9 months later, Ethan spoke words.
Fast-forward 4 years later, Ethan is now 6, has language, varied cognitive abilities, and is able to learn certain things authentically, without the need for ABA. He attends a special needs school in Hohokus NJ, ECLC (Education, Careers, Lifelong Community), and since April 2017 his start, Ethan has been soaring getting all of the therapies and services he needs for his autism disability. Things we never imagined would aid with language, such as Hippo therapy at Starlight Farms in Ringwood NY, and ECLC’s Sensory, and Music Listening program have helped Ethan develop and utilize language more appropriately.
Despite all of this wonderful progress, we can still depend on autism to surface multiple times a day at home, school, and when we are out and about. So here I am at the Shoprite in Hillsdale NJ, and what was supposed to be a grocery trip spanning 45 minutes at most, turned into 2 hours and 30 minutes, with a massive tantrum over “isle 9, isle 11, isle 13, and all odd numbered isles.” It did not matter that some of Ethan’s favorite food items were located on these isles. Ethan had decided odd numbers were “banned” today & he just continued to script “you delete all odd numbers” in repetition. We have found in our world of autism, it does not have to be logical thinking.
So in keeping with the spirit of not letting autism win, and a 6 year old child dictate our shop, I move Ethan’s Caroline Cart (“Caroline’s Cart is a shopping cart created for special needs children. It provides parents and caregivers a viable option to transport a child through a store while grocery shopping” Caroline’s Cart FB website), slowly down isle 9. Ethan starts crying, kicking, wailing, and doing self-injurious behavior. Within seconds, Ethan managed to scoot out from under the handlebars and he was off for the run, which is called “elopement.” (“Elopement, which can be defined as running away from or leaving a designated area such as a classroom or the home environment, is one of the highest priority of challenging behaviors for individuals with autism spectrum disorders” Autism NJ resources). As I tried to grab him, I slipped and fell giving him a big lead. I am now on the chase, something I am all too familiar with, and is quite scary.
I screamed for people to call 911, get the store manager, and lock the doors. I begged people to “grab him” as I was chasing after him but I surmise people are too afraid, and unsure what is happening. You are on the run for your child’s life as Ethan will sprint right out on to the main road, without looking, and even run into solid glass. He is not aware of his surroundings, he will run and run and run because in his mind he is getting as far away as possible from the dreaded “number 9.”
I will take full ownership for not strapping Ethan into the Caroline Cart, but I was trying to give him more bandwidth to grow and develop, hence more freedom for mobility. I will also take full responsibility for sending my husband on his merry way to Westwood to fix his glasses, even though my husband was concerned about me being alone. Last words to my husband, “I got this, I will be fine.” I like to think I can take on autism, and my biggest problem, I want to be normal, hence just shop in a grocery store with my child like all moms do. But guess what? I am not all moms, and my child is not a typical child. He has autism and that disability rears its challenges daily, and when you least expect it at times.
Thanks to the kindness of a stranger Ethan was caught 15 feet from the exit to Shoprite, which enabled me to catch up and grab him, which saved him from running into the parking lot and a main thoroughfare. As I am on the floor with Ethan, still trying to manage a tantrum, Ethan is screaming, “you run away, you run away.” Thankfully at 6 I can still hold him, & was grateful that disaster or worse was adverted, but I cannot help but think what will happen when he is 10 if I cant remedy some of these behaviors related to Ethan’s disability.
The Shoprite in Hillsdale, being one of the first that we know of to get the Caroline Cart, understand Ethan’s disability needs, and have even supported us at an Autism walk. It gives us confidence knowing that we can go into the store and the employees are willing to help. John the store manager assisted me in getting Ethan back to the Caroline Cart, and redirected him with a football balloon. He also offered to have someone shop on odd numbered isles for me and while I was so grateful, I refused to give into this behavior. Autism cannot win, or it will run your life.
Language, we have learned, will usually feed into the autistic tantrum, so for 10-15 minutes, as he is now strapped into the cart, I cooled him down with water, and tried not to talk. As I slowly make my way down isle 10, with nothing for me to buy, Ethan smiles. Ethan continues to script how “10 is happy, and 9 is sad”. 10 is an even number, and even numbers make Ethan smile today, or so I thought.
I decide now to make my way over to produce where the numbers are not so clearly defined, hoping Ethan wont look up. As I make my way towards the salmon Ethan starts screaming because fish is not part of the deal. Ethan cannot handle anything in the cart that he does not “recognize” and fish falls into the ‘you cant buy category.” l ignore his behavior, distract him with a bag of pirate booty, and just try to get through the rest of this shop, while frantically texting my husband to “come back.”
We head off to the deli to get Ethan’s cheese. It is not in an isle so I am looking forward to peace. I pull out the number for our turn and it is 82. Hooray, an even number! Ethan starts to scream and carry on scripting, “you want 1, go back to the beginning, 1 is first.” This is where Autism can make you spin in circles and as if Autism is winning. I feel deflated and exhausted and am tempted to not buy the cheese. I tell myself, “you cannot wait for 23 people when you have 82” (they were on 77). Thankfully, one of the deli managers who know us, gives Ethan a piece of cheese, & fulfills the order. Ethan is still scripting about 82 being bad as we exit the deli.
As we checked out at the register, we needed 2 walkouts, and an army of help from Shoprite that thankfully Jim the Assistant Manager arranged help for us. I commend Shoprite for how they treat all of their customers, but especially making it feasible for parents of disabled children to grocery shop.
At checkout, Ethan was done, the diaper was soaked and he does not understand about paying for food, and having it bagged. He proceeded to carry on and not even his fun balloon that he enjoyed playing with during our shop, would mitigate the tantrum. I was worn down by autism but was comforted to know in a few weeks, at the parent support group, the school psychologist and Ethan’s special education classroom teacher, would provide guidance on what to do the next time we grocery shop, because it is a life skill. It is not realistic or practical to avoid the grocery store because of “autism.”
Weeks later when I attended the support group, ECLC’s School Psychologist James Wagner discussed how best to handle grocery store challenges and various modalities that could be utilized. He recommended making a list, with a diagram of the grocery store so Ethan knew ahead of time what isle things were located on, and what we needed to buy. Many children with autism are visual learners so utilizing these tools can be helpful. He suggested I get compliance at home so Ethan knows on a map where everything is located & what we need.
Mr. Kevin Carney, Ethan’s Special Education Teacher, suggested Ethan participate in the shop so he is active, and feels a sense of control. He suggested I have the cart, but let him walk with me. They both recommended 5-15 items, & encouraged me to have Ethan pick up the items so he feels as if he’s a part of experience. Mr. Kevin Carney does “Grocery Store Math” in his classroom so I could transfer school play, to real life, by making Ethan a participant with the money as well, since paying for the shop is always an issue. Months later when we implemented the strategies, we had success in buying 12 items, and on odd numbered isles. I was proud that Ethan was able to do it, and optimistic about dealing with other challenges we have, related to Ethan’s disability.
Back to February 3rd, we get home from our grocery ordeal. My husband helps and then goes to Cyclesport in Park Ridge to unwind, and get his bike fixed. As I unpack the groceries, Ethan is an angel for me. He quietly plays ABC mouse on the iPad in the kitchen while intermittently scripting all the items that we bought from Shoprite that are for him. I am grateful I can put the food away, and we seem to have calm.
Ethan and I retreat to the bedroom area, and I announce it is time for a rest before dinner. Ethan says “mama cuddle with you,” which means “mama cuddle with me.” It melts my heart. I get hugs, kisses, and “I love you mama” from my sweet boy. He then giddily points to ABC mouse, and says “mama play with you,” which means “mama play with me.” We play ABC mouse where we dress up pumpkins, and turkeys in different costumes and have much laughter over our creations. He is sweet, he is lovable, he is an utterly adorable 6 year old, and I am reminded, autism does not win.
A few hours later my husband gets home. He feels better knowing he is going to ride his bike this spring. Ethan is happy to see him. He says “Daddy do candy crush saga, no soda.” Ethan wedges himself in between the both of us on our bed. I look over at my husband with Ethan enjoying this game on the ipad. They are laughing, smiling, and being playful as they figure out which jelly goes where. Ethan announces “huggie please” which is his word for Hug. He gives me a two-arm hug and then a bear hug for my husband, and he does not let go. Again, I am happily reminded, autism does not win. We win.