This Daily Feels is brought to you by…The Diagnosis
Before I open and honestly share my story, I want to preface that in no way am I complaining, feeling sorry for myself or painting a negative picture of what you’re about to read. This is the raw truth of the road I travel with my cute, 6-year-old partner in crime. So here goes it…
Most mothers would say their lives changed completely the day their child was born – not I…that was the day my life began to make sense actually. The day my life changed completely was December 9, 2014 (1:36 pm to be exact). It was on that day that my son Kellan was diagnosed with Autism. I remember exactly what I was wearing, who I was with and how it was delivered to me, “Miss Gaudelli, through all the testing and analysis we did on Kellan, he, in fact, does have Autism”. Up until the actual diagnosis, I had heard of how these exact words can land upon those parents that hear it for the first time. For me, it landed irrefutably. I didn’t fall to my knees, I didn’t feel numb, I didn’t cry… I just knew. I knew it when he missed all of his milestones. I knew it when his pediatrician prescribed him early intervention services. I knew it when his physical therapist urged me to see a physiatrist. I knew it when that physiatrist so kindly suggested I think about enrolling him in a special needs/early intervention pre-school. I knew it when I went to tour that school and I sensed a familiarity amongst all the kids there. I knew it when I took him to a well-known Developmental Pediatrician – who at the time misdiagnosed him with ‘developmental delays’, not autism. I knew it when he wasn’t sleeping well. I knew it when he couldn’t tolerate certain fabrics. I knew it when he melted down over loud noises. I knew it when he wouldn’t eat certain foods. I knew it when my friends and family told me “not to worry, he will crawl/walk/talk in his own time”. I just knew it. My motherly instincts just fucking knew it. So in my knowingness, I sat there in the neurologist’s office, nodded my head, grabbed the documented diagnosis, took Kellan’s hand and we walked out a family touched by Autism.
On that cold, grey winter day, I knew that life as I had planned it and the type of mom I had intended to be had changed. The mom who would cheer from the bleachers, the mom who would travel with her son around the world, the mom who would help him write letters to Santa, the mom who would make fun snacks for when his friends came over to play, the mom who would take her son to his first concert, the mom who would have deep conversations with her son about rocks, sports, music and eventually girls…all this planning and dreaming of being ‘that’ mom had changed that day.
I took a few months to hold one of the biggest pity parties ever thrown. Lots of why me’s. Lots of punching things. Lots of earth-shattering screams. Lots of overthinking. Lots of sadness. Lots of WTFs. Lots of EVERYTHING. Then, 5 months to the day, I remember waking up (literally and figuratively) putting on my big girl panties, grabbing the cape and never looking back at that cold December day – for now I know it was just a day. And on that day of awakening in May and all the days forward I was going to create the best of what was given to me – that gift which is Kellan – the amazing, kind, funny, cuddly, cute little boy.
When the fog cleared, I realized that life would now consist of lots of “instead of’s” and “rather than’s”. Meaning instead of driving my kid to soccer practice, I drive him to therapy appointments. Rather than traveling to exotic destinations, we visit exotic creatures at the local zoo & aquarium. Instead of befriending school moms, I hang with therapy moms. Rather than celebrating game-winning touchdowns, I celebrate different goals – like climbing the steps by himself, trying new foods and changing up the routine without a meltdown occurring. Instead of attending parent-teacher meetings, I actively prepare for annual reviews (ie. IEP meeting -“individualized education program”). Rather than conversating about rocks, sports and music – I just become over-joyed that he can answer a yes or no question.
In truth, we live a different life than most – even though our struggles are a bit atypical and our successes are simple yet significant… we LOVE big, LAUGH hard & STAND strong – he and I, hand-in-hand, the dynamic duo taking our little world by storm. And whereas I am not ‘that’ mom (which I had thought I would be) – I am ‘this’ mom – the mom I was always meant to be – a proud mom, a brave mom, a loving mom, Kellan’s mom!
So being today is Autism Awareness and Acceptance Day, here are 10 ways you can build your Autism awareness (and acceptance):
- Educate Yourself: If you know nothing about Autism, here is a great one sheet on what Autism Awareness & Acceptance is all about.
- Wear Your Support: Much like every cause has a ribbon, so does Autism. It’s quite colorful and designed with puzzle pieces (the puzzle pattern reflects the complexity of the autism spectrum. The different colors and shapes represent the diversity of the people and families living with the condition). Why not show your support and wear one of these ribbons the whole month through?
- Read a book about Autism: My faves include… The Spark // The Reason I Jump // Uniquely Human
- Watch a movie about Autism: Temple Gradin // Life Animated/ // Sounding The Alarm/ // Best Kept Secret
Videos to explain autism to kids: Just Like You, Arthur explain Autism
And an amazing TEDTALK – “How Autism Freed Me To Be Myself” By Rosie King
- Get involved in Community Events supporting Autism: Many nonprofits will be hosting events for Autism Awareness Month such as walks, sensory friendly films, donation drives, or seminars held at community centers/universities. Not only can these events provide a sense of community, but they can bring awareness to resources available locally. These events are always looking for help to organize the events, volunteer as guest speakers, man booths, or donate supplies. Check with your town/county to see how they’re supporting the cause during this month. Kellan and I are going to this event The Rye Nature Center on April 21st.
- Donate to a cause – Many Autism organizations and look for donations to provide support groups for families, social clubs for young people on the spectrum, or therapy and autism research. There are lots of amazing organizations to choose from (go Charity Navigator to check out which cause you align with most). For the month of April on our Facebook/Instagram page, we will donate $3 per “like” to Autism Speaks.
- Spend time with people on the autism spectrum. Truly, The best way to learn about autism is from people with autism. The awareness that’s needed most right now is not that autism exists. We need awareness of what it is and how it affects different people in different ways. You can help by getting involved with an organization or school program and work with children on the spectrum. You can meet people your own age who are living with autism and make a new friend. And if nothing else, you can always come and hang with Kellan and me 😉
- Sign a petition. Despite the numerous awareness programs in government, our schools, healthcare, and even private businesses, there are sadly a lot of changes that still need to happen to create a society of complete awareness and acceptance. Let the people in charge of those organizations know that ASD needs matter and changes need to take place now. No student should have their education suffer because they are on the spectrum, no individual should be stigmatized in public or the workplace because of their ASD, and no one of any age or condition should be without proper healthcare and assistance. Follow this link to find a list of petitions you can sign right now to help spread autism awareness and help those on the spectrum today
- Support businesses that employ people with autism. It’s one of the biggest concerns of parents with special needs’ children, they’re future. There are many companies now that employ people with autism – Ford, Microsoft, Target, Walgreens, etc. Some local businesses include Prospector Theatre in Ridgefield CT, Girl Again in Hartsdale, NY, Good Reasons in North Salem, NY, Harvest Café in Staten Island, Puzzles Bakery, and Café in Schenectady, NY, Strawtown Jewelry in New City, NY.
- Help a parent in need. If you see a child melting down in public, don’t always think it’s because they’re spoiled or ill-behaved. Don’t stare. Don’t snicker. Don’t judge. Go up to the struggling parent and ask if there is anything you can do to help. Or just walk on by and send them love. That’s all that is really needed.
Blogger: Janis Gaudelli “Champion of Truths, Unicorns & AWE-tism”