Everyone has a story to share. For 30 Sundays now I have shared yours. Each one I hope brings about perspective, emotion, inspiration, and life’s greatest reward: Love.
Love is at the core of all human experience and today, it can be described in one simple word, the title of this week’s post…
The Sunday Series (30): Unconditional
So you wish upon a star, sometimes lots of stars, the sun, the moon, the deep blue sky, praying for your dream to come true. But the dream doesn’t always work out the way you want. It might be different than you imagined, not exactly what you envisioned, but it doesn’t mean your life remains unchanged, or transformed. In fact you might just become the person you never expected to be. Or maybe you find the kind of love you never knew existed.
It’s pretty simple. All Jennifer Drucker wanted out of her adult life was to have a daughter. She had saved everything from her childhood: her stuffed animals, her stationary collection, her sticker collection, her comic books, and all the things she loved as a teenager, just so she could pass them on to her little girl. All she wanted was that perfect little girl.
Jennifer and her husband Frank BonGiorno were living in a townhouse community in Long Island, New York when their little girl, Cassie, entered the world.
The changes were slow at first.
Jen had a friend who also had a daughter about 5-months older than Cassie. Jen noticed the other girl seemed to be developing faster than her own daughter. Her friend noticed it as well, but kept quiet for some time. Jen said Cassie could crawl before she could even turn over. And then there was the fascination with a certain toy. “Remember those toys that made noise and had little dots that formed the speaker?”, says Jen, “Cassie would sit with the toy and bang her knuckles on those “speaker dots” over and over and over, lost in her own little world. She would bang so long and so hard callouses formed on her knuckles. Jen’s friends jokingly referred to Cassie as a “knuckle-holic”. But for Jen it was no joke, she felt something was wrong.
At ten months, Jen took Cassie to the doctor and told them something isn’t right, the doctor didn’t agree with Jen and said everything was fine, don’t worry. At the one year check-up Jen told the doctor about some of the odd behaviors. The doctor said she was panicking for no reason, Cassie was developing, all kids do different things. But not two weeks later Jen brought Cassie back to the doctor. And this time Jen was hysterical, she demanded her daughter be tested, something wasn’t right. The doctors ran some tests and gave Jen and Frank the diagnosis… autism.
Within days Cassie was in a day-long early intervention program for autistic children. Help was coming to the home as well, speech, occupational and physical therapy services and a ton of special education hours. The changes continued. At 14-months Cassie started walking… within 48 hours she was running. Jen says, “kids with autism, their skills are so splintered, they can be so advanced in one area and so behind in another. If you’ve got one child with autism, you’ve got one child with autism… no two are alike. If there are six autistic children in a room, there need to be seven adults, because each child’s behavior is different and they must have individualized attention. What’s also commonly diagnosed with autism is Tourette’s Syndrome, ADHD and sometimes intellectual disability. Sometimes they say with autism, it’s in there, (the knowledge), but they just can’t get it out. It’s not in there with Cassie.”
Jen continues, “Cassie knows shapes, colors, addresses… anything she can memorize she knows. But she doesn’t understand anything abstract. When she’s present she is so sweet and cute, she asks for tickles and ‘chase me’. But then she has her self-stimulatory behaviors. When a kid has autism they want to present themselves through something, like a stick, to touch other objects. For Cassie it’s the straps of a plastic bucket, you know those white handles of the bucket and shovel kits you get as a kid? This is Cassie’s whole life. Not the bucket and shovel, just the white strap.”
And Cassie has to have that strap. There is no telling her it doesn’t exist, no substitution. Jen says they finally convinced this company to send them one-thousand bucket handles, just the handles, (at 7 cents a piece). “Cassie bends the strap, and shakes it and that’s when you know you she’s lost in her world of autism”, says Jen. “She will tell me, “I need a break” and go off in her world.” Without that strap Jen says Cassie would melt down and never be able to stop asking for it. She has to have that strap.
To speak to Jen Drucker is to understand courage in the face of adversity. She is handling her day-to-day challenges with her daughter the best she can. And those challenges are many.
Like the time they ran out of food, Cassie’s food. Cassie will only eat four foods and one of those are gluten-free, casein-free (lactose-free) chicken nuggets from a specific company. Cassie, who is now 14, has been eating those nuggets three-times a day for the past 12-1/2 years. A little while back the company that makes the nuggets had to shut down for six months and it led to one of the greatest challenges Jen had to face. Without those nuggets, Cassie refused to eat, she would starve. This little girl with autism couldn’t comprehend what was going on, she couldn’t be told there were no nuggets. There couldn’t be any substitution. She might starve to death. The company worked with the family and found stores all over the country that still had the nuggets on their shelves and family and friends helped to gather them up and put them in storage. But with four days to go before production was to begin again, Jen ran out of nuggets. Cassie didn’t eat for four days. She only drank juice, she was so upset and stressed over the situation she simply stopped eating.
Jen says Cassie is such a creature of routine and since she was a little girl, Jen has fed her. Even at 14, she still wants and needs Jen to feed her, to bathe her, to dress her, to do other things most of us take for granted. Then there are the medications Cassie must take for anxiety. Jen says, “every time we leave the house, Cassie is stressed, except for going to school. She has no idea where she is going. She doesn’t know if it’s for something fun, or to go have surgery. ”
Cassie had major surgery at the tender age of five, when her lung collapsed and no one knew it. Jen says children with autism can’t always show pain, or even explain it, so they had no idea, until it was almost too late. Cassie spent four weeks in the hospital, but it was after surgery that Jen says she experienced one of the highs in her life, when her 5-year-old, who was almost completely non-verbal, said the word which melted Jen’s heart… “mommy’.
Living in the the world of autism can be a challenge for any family, and Jen says for her and Frank it was no different. Their marriage ended in divorce. It’s been four years now that Jen has been a single mom, moving back to Maryland, where she grew up and is now living amongst her greatest support system, her childhood friends. Those same friends who last year organized a fundraiser for Cassie’s school, raising nearly $5,000.
Cassie has a great friend too, her brother, Sam. Sam is two years younger than Cassie and was, as Jen describes, a “9-11 baby”. The family was still living just outside New York, when the terrorist strikes ravaged the city and rocked the world. Cassie was at her special school, which when the planes hit the buildings, when into lockdown. Jen and Frank couldn’t get to Cassie, and it was then Jen became petrified of what would happen if something happened to her and Frank. Cassie would be all alone in the world. Sam is the product of that fear, but it was meant to be, because he’s also now Cassie’s guardian angel. Jen says Sam knows everything about Cassie, he is so great with her. “Cassie is the sweetest person I have ever met”, says Jen, “but Sam might be sweeter. We live in a court with more than a dozen kids and they will come knocking on the door to ask Sam to play, but if Sam is doing something with Cassie he will put them off, telling them he’ll be there soon, after he’s finished playing with his sister.”
But Sam’s life is also a by-product of Jen’s constant attention to and responsibility for Cassie. “Sam is the kid at his sporting event without a parent there”, says Jen. “It’s difficult and expensive for me to spend time alone with him.” Jen has to pay a babysitter, (one who she can trust with Cassie), plus the cost of whatever activity she and Sam might do, like going to a movie, and getting a snack. Even the simple act of taking Sam alone to get a haircut is a challenge. And not to mention Jen’s alone time. The time for her to experience adult life, void of the day-to-day challenges of being the mother of a child with autism. A mother’s job is tough enough, the world’s toughest, but the respite from that responsibility is not something Jen took advantage of for quite some time. “It took me a lot to learn balance”, says Jen. “I gave my freedom away in my 30’s, it was all Cassie and dealing with (family issues).” Now Jen goes out at least one night a week with her friends, to get a break and get recharged.
From speaking with Jen, there is story after story after story I could tell on this blog. Jen’s description of her life with Cassie could be, should be, its own blog, its own journal. I asked Jen about the highs-and-lows of the past 14 years with Cassie. She says the high was when she heard the word “mommy” for that first time following Cassie’s surgery. The low? It was the day the neurologist confirmed what her pediatrician had finally diagnosed – Cassie had autism. “I just wanted to die”, says Jen. Everything she had saved for that someday, for the day she had a daughter, it no longer mattered. Jen knew she couldn’t pass on any of those things, Cassie has no interest, she could care less.
Except what Cassie gives Jen every day goes far beyond worldly possessions. Jen says she is not the same person she was before Cassie and when asked to describe the one thing she can share with others because of her experience of raising an autistic child, it’s this: “There is value in every person. No matter who they are, how developed or not, every person has so much to offer us, if you just give them a chance and just pay attention. With Cassie, with everything that’s not there, what I get back from being her mom is just amazing, because I allow that. When a child has been struggling for years and years and she achieves something, there’s nothing like it. Don’t judge. Just open up and you will grow. Cassie is such a special person and if you don’t pay attention to the things that make her special, you’ll miss it.”
To the world you might be just one person, but to one person you might just be the world. For Cassie this is Jen. Sometimes you wish on a star, the sun, the moon, the deep blue sky, for a dream to come true. You wonder if Cassie could truly speak, if she could experience those abstract emotions and turn them into words, into sentences, what she might say to Jen.
I bet she’d tell her how the stars, the sun, the moon and the deep blue sky, for her, look like one perfect person. The person she calls, “mommy”.
Until next time thanks for taking the time,
Mark Brodinsky, Author, Blogger, Emmy-Award Winner
The #1 Amazon Best-Seller, It Takes 2. Surviving Breast Cancer: A Spouse’s Story
Feedback, comments or ideas for The Sunday Series: firstname.lastname@example.org