My son’s name is Joaquin, which means “God will determine”. In 2008, I discovered that I was pregnant after believing for many years that motherhood was not in my destiny. My pregnancy was perfect in every way and I was given my son as a gift and for a purpose I never imagined.
At 4 weeks, Joaquin had surgery for pyloric stenosis, an abnormality of the lower stomach muscle that caused him to reject all oral feed. At 2 years of age, he had eye surgery to correct a squint, without which, his vision would have been severely affected. I thought that was enough, but God already had a predetermined plan.
In 2013, after being refused admission by four primary level schools, concerns started going off in my head. My son spoke in full sentences at twelve months (I thought that was normal), knew the alphabet and was able to count to 20 by sixteen months. He was advanced for almost every milestone, yet primary schools were saying that he wasn’t ready. On our 11th attempt, a conversation changed our lives. “Has anyone ever suggested to you that your son may be autistic?”
I was completely floored and devastated, because I suddenly realised that what I thought were little quirks were actually signs of something more. His refusal to make eye contact, his hatred of hugs, his absolute need for routine, his fixations and the methodical way that he would line up his toys… since mama is a little OCD, I figured it to be a hereditary quirk.
In August 2013, we received his official diagnosis of Asperger’s Syndrome and Sensory Integration Disorder. To date, my son has extreme difficulty interacting with other children and tends to prefer adults instead. He has also developed high anxiety, which is common with autistic children.
My journey with autism at one point, almost felt like I was going through the stages of grief. I was shocked! I refused to believe that my child was autistic. I was angry at myself for everything that I thought I did wrong during my pregnancy. I was angry at the world and at God for making my child go through this. But as a single mother, I don’t have time to wallow. My son still needed to be in school and as much as I wanted to be a full time mama, the bills did not permit.
In search of a solution, I contacted every possible organisation, association, society, anyone who had the word autism in their name, looking for any degree of support, especially emotional. This too was minimal.
I joined every autism group that I could find online (mostly international groups), just for the opportunity to say “my son had the most epic meltdown today” without hearing “all children at that age have tantrums”, and then being forced to explain that meltdowns and tantrums are not the same.
I needed to know that there were people who understood how frustrating and polarizing my life was. I became afraid to say anything about my son because I hated to hear my fears belittled by those who didn’t understand.
I met some other incredible mamas who reached out to me in a virtual world. I was being tagged when certain questions were raised and I recognised how critical it was to have a local support group. That was how I first founded an online support group named Autism Spirit, with another fierce autism mama. A few months later, Joaquin’s former speech therapist, messaged me and suggested making this a real life group. And it became a reality.
Our goal is to empower parents to be the best advocate for their children, while educating the public. One of the most common statements that any parent of an autistic child will hear is “but he looks so normal”. There is no look to an autistic child and the nuances of autism are so diverse that if you meet one child with autism, it is unlikely that you will ever repeat that experience regardless of how many more you meet. At least 1 in 45 children is on the autism spectrum.
This is not an illness or a disease. It’s simply a different way of processing. And the only way to help is to understand. Too often, people like to offer their opinions, which can be well-intentioned but sometimes devastating to a parent who is simply doing the best that they can. I personally am immune to unsolicited opinions but not everyone has the same mettle as me.
My son is now nine years old. He is brilliant, recalls details and information beyond his age. His handwriting is atrocious but he said since he was 2 years that he wants to become a doctor, so he has that part down. He has since been diagnosed with dysgraphia to add to his list of challenges. His biggest issues are changes to his routine and his inability to interact socially. He is often overwhelmed by huge spaces and noise and his anxiety affects him daily. His fascination for the last year has been astronomy, so he wanted a telescope for his birthday and was very specific with the minimum specifications needed.
He understands that he is different, but he also knows that he has a mama who loves him unconditionally and will fight to ensure he has every opportunity he ever needs. Every day remains a challenge… some days more than others. You have to ask for a hug and he hates having his photo taken. But he will give you the last of his cookies if he sees that you are sad and make silly jokes for you to smile.
Originally written as part of The Lionesses Project by Cause An Effect http://www.causeaneffect.co
And feel free to check our Facebook page http://www.facebook.com/autismspirit