Autism and the shared experience

Last week I received a phone call from a woman wanting to know about our programs at S.Au.S. Before I could even say anything she dove into the details of recent events concerning her son. Every time I tried to interject she just continued. Her son’s school had red-flagged the boy as having an autism spectrum disorder. The mom didn’t know what to do with this information. In her mind she thought that once the news was delivered automatically someone would appeare to guide, direct and take care of her son.

I realized quickly she wasn’t looking for programs for her 7 year old son instead she was looking for is a lifeline – a person who would tell her everything will be okay. The more she talked the quicker her tears flowed. Her voice quivered as she explained that the school her son attends recently revealed that they believe her son is on the autism spectrum. She knew he was dealing with ADHD but not autism. She made it sound as though autism was way worse but I beg to differ but that is a whole other topic of conversation. I will say this - regardless of the diagnosis our child may have because they struggle we as parents struggle too.


My heart broke for this mom because I remember as though it was yesterday Keyan receiving the diagnosis of autism. It all started when my baby boy was suffering from chronic ear infections. Tired of pumping him up with antibiotics I asked to see an ear, throat and nose specialist. It didn’t take much convincing for Keyan to have tubes inserted into his ears. Once the tubes were in place the doctor ordered an audiologist test to ensure everything was ok. Following the doctor’s orders we brought baby Keyan to the audiologist. He was extremely uncooperative so they decided to send us to the Children’s hospital a week later. Again during the audiology exam Keyan was uncooperative. Not to worry they had another technology to determine whether or not he could hear us. The test concluded that he could. They proceeded to ask me a list of questions. As a mom I was simply relieved (at the time) that my son was not deaf. I didn’t overthink things.


Two days after our visit to the audiologist the phone rings and it’s the pediatrician. Only seconds into the conversation he reveals that the Children’s hospital suspects that Keyan might have autism. That is how it all began. A simple phone call shattered what was my perfect little life.


Having spoken to this mom brought up all kinds of pushed down emotions. Albeit this was many years ago the emotions attached to that time never vanish. Ask anyone who has had a heart wrenching miscarriage – we never forget those babies. She explained to me that they dropped the bomb and she was left to pick up the pieces. I find it tragic that 14 years after Keyan’s diagnosis that specialists/professionals have not found ways to broach the topic and offer real guidance. It saddens me. I expressed this other that no one personwill be your savior on this journey. Instead you have to be an information collector. I call them nuggets of information (useful resources). Early on in the process parents have to research, read, investigate and advocate for their child. First there is the infamous “google search” and wherever that leads us we will explore. I know the day my phone rang that mother was in the process of collecting nuggets. Despite me not being the right go to person I took that call and gave her the best nuggets I could gather.


This is a prime example of how my job can sometimes be very difficult. After 30 minutes on the phone with a woman I don’t even know I was left totally drained of all my energy. I am an emotional person to begin with but then add a mama bear who is desperate and looking to me for answers. I want so desperately to help but I feel helpless because I can’t give any parent what they really want which is to hear that everything will be okay. I had a full day planned and needed every ounce of my energy to get through it. The phone call totally derailed my day. It’s bitter sweet at times because I want to help but often it is at the expense of myself.


The most important thing I tell those who call me when their child may be red-flagged for autism is that the child you have today will be the same child tomorrow. The only thing a diagnosis does is help you with the big picture. It enables you to get the proper tools to help you understand your child and hence help them live their best life possible.


This story is common and it belongs to all of us. Whenever someone is diagnosed with cancer, a loved one is suddenly taken from us or we suffer alongside a family member (for whatever reason) we need connection. We not only want answers but we need to connect with those who have a shared experience. We want to feel less alone, we need answers and grasp to change the situation, begging at times for things to be different. If we take a moment to think of our darkest moment(s) then we can connect to this mom.


When our world comes crashing down

#autism #autismawareness #amamabear #autismwariors #differentnotless #mtlblogger

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