So last Saturday was our first Parent’s Support Group meeting and I have to say, it went really well! I was so nervous that no one would show up. Or if they did, they would be quiet and hesitant to share. I worried that parents would be skeptical or not interested. I am happy to report, even days after the meeting, I am still on Cloud 9. It absolutely wasn’t ANY of those things.
Yes, we didn’t have a huge turn out for this first meeting. The parents that showed up, though, are absolutely determined to not only do whatever they can to help their child succeed, but also, want to make sure that our entire autism community is treated fairly and has support and access to what they need. We had parents sharing about their children on the spectrum ranging from 3 years old to 24 years old!
Honestly, what impressed me the most about meeting these strong autism moms, dads and even a grandmother, was the level of acceptance they have for their child’s diagnosis and for their challenging path forward. It made me remember a poem by Nicola Turnbull from Facebook Looking In/ Looking Out.
Acceptance isn’t easy. I know this because I’ve struggled with it over the years. I can still vividly remember bawling my eyes out in the shower after the first time a doctor in the US Virgin Islands mentioned the word Autism.
First time hearing the word Autism…
At the time, we were living in the British Virgin Islands. I had to take Mateo to a specialist in the USVI because I was concerned about his regression (at the time I didn’t know that term at all). I was overwhelmed as a new mom. I struggled to handle everything mostly on my own without family there to help. I was worried about his hearing because of certain behaviors. He had also had a series of ear infections. I had no clue what Autism was and it was definitely not something I had considered.
Meltdown – yes adults have them too…
The doctor brought Autism up very cautiously after a battery of questions. She was very empathetic. She explained I should go see a speech therapist and a neurologist and, well, the list continued. On the long ferry ride back with Mateo, I was in shock. I’m still not sure how I managed to get a taxi, take care of Teo on the ferry, go through Customs and Immigration. It was all a blur. Until I got home at least.
When I finally made it through my door, I went straight to the shower. I bawled and bawled. I still didn’t know what Autism was, but it scared me. Lie. It freaking terrified me!
Confirmation…
Once I got over my meltdown, I started my research. The more I read, the more I KNEW. My family, my husband, my in-laws, my friends, all kept positive and saying, “it’s not confirmed”. It could be this or that. “Breathe, Christy.” ‘Pray, Christy”. But I knew. I still met with many developmental pediatricians and a pediatric neurologist. Mateo had hearing tests and too many blood tests done. I answered so many questionnaires. We met with behavioral therapists, speech therapists and occupational therapists. It was overwhelming and intense.
Each meeting, it confirmed what I knew. I didn’t need to wait for results or something in writing. It didn’t matter what any of my friends or family was saying. I sat in those meetings and answered those questions. There was no doubt in my mind that Mateo was on the autism spectrum.
GI Joe had it wrong. Knowing is barely half the battle…
But still, looking back, I hadn’t fully accepted the diagnosis. The ‘severe’ or level 3 label was a devastating shock, I admit. It didn’t stop me from pushing forward, though. I took classes. I read books. I did what I do- I researched. I told myself and everyone else, I wanted all these therapies to help him. Subconsciously, though, I think I was determined to ‘fix’ Mateo. This wasn’t real acceptance.
After a year or two of intensive therapy starting in Canada and then in Jamaica, I started to realize there wasn’t going to be a magical quick fix. It’s not like what you see on the TV or when you read about these miracle treatments.
Destiny’s Child said it best, “I’m not gonna give up / I’m not gonna stop / I’m gonna work harder”…
Mateo has worked with some of the most amazing and dedicated therapists. They put their heart and soul into helping him. Therapy is about continued hard work and for many, like Teo, the gains appear to be small. Mateo really is severely autistic. We cycle. He takes a small step or two forward and then one backward. Even with the best of help, he was never going to miraculously be better by age 5 or even age 7.
“If you can see it, its not far away. Before you can reach it, you must endure the pain.”
~Jah Cure, Nothing is Impossible
Autism IS a lifelong journey. There is no quick cure – no matter what therapy you believe in or try or what diet or pill you take. It is continuously fighting and struggling to move forward. And you will! Your child will move forward. It’s worth the time, dedication, sweat, and tears. Our children will and can improve – it’s just not easy or quick.
Real Acceptance…
Accepting THAT was the hardest part for me. Realizing that I will need to keep fighting and helping Teo for the rest of his life; knowing he’s gonna have to work 10-50-100 times as hard to learn or do something that might be so easy for a ‘neurotypical child’. This is real acceptance to me. Understanding that Teo will always be my child and we will be ‘forever hand in hand’ – that is our life.
For others, their acceptance and reality will be quite different. Their road and battle might be just as hard, but maybe a bit different. Their payoff could be a good job, college, independence. It varies because each of our sons and daughters on the spectrum vary. They are all unique. They are WAY more than their diagnosis. We just need to find the strength somehow to keep pushing for our kiddos. We need to dream big and still accept them for who they really are.