‘Of course he doesn’t, he’s absolutely fine!’ Everyone laughed it off. My little boy wasn’t going to talk, EVER.’: Mom to son with autism urges ‘acceptance starts in the home’

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“As soon as I found out I was pregnant, I knew I’d have a boy. It wasn’t a hunch, a mother’s instinct, a ‘feeling’it was biological science. Females have two X chromosomes, a male has an X and a Y. Neil, my partner of eighteen years, comes from a family of three boys, his dad comes from a family of six boys. The math was set.

I felt disconnected throughout my pregnancy. It was plain sailing, normal, ordinary. There were no bumps in the road, nothing to cause my feelings of inadequacy, but that’s usually how it works, isn’t it? Anxiety rears its ugly head whether we want it to or not and we are powerless to stop it.

I’d imagine all kinds of things were going wrong, scans were going to show abnormalitieshow would I cope? Funny, isn’t it? I didn’t feel like a mother at all, and yet maybe this was the very epitome of ‘mother’s instinct.’ But nothing ever went wrong. Scans and tests and checks were all absolutely normala word I now regard with complete and absolute disdain.

As the weeks passed, I’d start to imagine. What would the house be like with a raucous 7-year-old? How many times would I have to call on my preteen son to get out his room and come and get his dinner? Would I be driving my teenager to the cinema or would I let him get the bus? As he started driving lessons, would I take him out in my car, or leave that for dad? Would I be the sweet mom meeting the girlfriend, or the crazy mom? Would he go to college like me, or go straight to work and climb his way up the corporate ladder like dad? Would we help with his first house deposit?

Luca was born on August 30 of 2016thirteen days late, 7 lbs 12oz, 50cm long and with a head of spiky black hairnot surprising, considering the heartburn I’d experienced throughout my pregnancy! He was the result of a traumatic labor and he showed his disregard to join this world right until the bitter end. I don’t remember a significant detail about my labor, other than it was long and I contracted a potentially lethal infection. I wasn’t aware of the magnitude of the situation at the time, delirious with both pain and exhaustion. And even knowing the consequences, I still considered an epidural.

Courtesy of Amy Hamilton

And after all the commotion, I was rewarded with a tricky little baby. He cried, cried, cried, and most days I cried, cried, cried right alongside him, letting my tears mix with his, totally unprepared for this role I now played. I was completely overwhelmed at the lack of loving feelings I had for him, and for myself. We had a rocky start, my baby boy and I. I dreaded the days because they were filled with screams and tears, and I dreaded the nights because my mind had no distractions from the darkness that seemed to plague each and every thought I had. To be clear, I loved my son. I just don’t know if it was the right kind of love. I didn’t enjoy being a mother in those early daysit was a chore, and it was a chore to pretend.

I noticed a shift when he was around five or six months old. I cried less, he cried less. He slept more and played more. He developed a little baby sense of humor and we had fun. We giggled and played ‘peek-a-boo,’ went for walks, practiced sitting up by ourselves. I was falling in love with my son, with being a mother. I went from counting down the seconds until he was in bed, measuring our days on feed schedules, to missing him when he slept and craving more hours in the day just so I could be with him.

Courtesy of Amy Hamilton

Luca met all physical milestones right on time, but he had quirks. Little nuances that were strange and unexpected with developmental progress. I used to joke when Luca was around nine or ten months that he showed signs of autism. Not because it was funny, but because I wanted someone to tell me I was being silly. I would bring it up casually in conversation with work colleagues, and they’d laugh it off, having no idea how I used humor to deflect the dread I felt. They’d placate me by saying their little ones did this or that, too, and I’d cling to this information, thinking maybe, just maybe, their child had autism, desperate for someone to know what I was going through. But no one did. And so, then my fears were mine alone, again.

‘Of course he doesn’t, he’s absolutely fine!’ I heard those words a lot. I heard them at his 11-month check up, even though I tentatively mentioned autism and was it something I should be concerned about? Should I really not worry that he is intensely focused on spinning objects? And those hand and ear flapsthey’re normal? But he walks on tip-toesoh, I see! All babies do that.

But then all of a sudden, things that were maybe just a delay, a phase, were now a red flag. There was a very real probability that my little boy had autism. More professionals become involved, all of a sudden there were appointments to attend, people started talking about everything he couldn’t do, and I’d counteract with something he could, making sure they were remembering how amazing he was. But nobody wanted to hear the ‘yeses’ and I raged for my little boy, despite his obliviousness and continued happy nature.

But then the words never came, and he was considered non-verbal. And that was hard to accept. My little boy wasn’t going to talk. EVER?! He wasn’t going to start gym class or join a little football team? School would be different. Friendships would be different. Life was going to be so different, so unexpected and I was overcome with grief, struggling to see how I was going to cope with this and fleetingly wondering why I decided to have a child at all.

Luca is the only child in my family history, that we know of, that has autism. This was hard for me to accept. Why did it have to be my child? Why Luca? Why him? Was it because I didn’t love him the right way as soon as he was born? Was this my punishment? Did I do this, cause this? Was this my fault?

Courtesy of Amy Hamilton

And that was the point where my mind started to shift. Again. We’d have good days, for sure. Luca was the exact same little boyhappy, crazy, a bit weird, loving, but I couldn’t shake the ‘why me?’ Why was this happening to menot us. Me. Why did I have to have the autistic child? There were 3 other woman who gave birth on the same night as me, but I bet their kids were developing just fine. They didn’t have to go to development centers, or pin their child to a bed and restrain their arms and legs to have blood drawn, or have various professionals come to assess their children in their homes, the space that was supposed to be safe and filled with fun and love. It was unfair. I was angry, and so very bitter.

And those were the bad days, but there were terrible days too. Days when I couldn’t look at my child without seeing all the things that would never be on the cards for him. Days where I could only see the negative side of this lifelong diagnosis. Days where I was reminded that this was lifelong. As in, as long as Luca lived. Not as long as I lived, or Neil lived. Who was going to care for him when we weren’t able to? Who can I trust to love and care for my child as much as I do? Nobody on this planet could.

Courtesy of Amy Hamilton

Acceptance is a funny thing. It’s tentative and my relationship with it is fragile. I try very hard to have a positive outlook on autism. We are in touch with some amazing professionals who only want to help us and help Luca achieve all he is capable of. But the reality is that my child’s life will be exponentially harder because of this disorder. He is 4 years old and doesn’t know colors. He can’t count, point or wave. But more than that, there are days when he cannot look into my eyes. Days where his senses grip and control his entire body and cause an apocalyptic reaction in his brain that manifests in physical contortions and raw throat screams. Days where I can only guess what might be causing his tears and guessing wrong each and every time. And autism causes that. Autism is the reason for my little boy’s difficulties.

To know there are times I cannot calm or ease my child’s fears seems like failure to me, sometimes. The pressure crushes my chest and I fight hard to make sure I am what he needs. Because, although we had a difficult start to our relationship, I could not imagine my world without my son. He is my sunshine, my joy and I absolutely, completely, utterly love him. He smiles and I smilecause and effect.

Courtesy of Amy Hamilton

So whilst the difficulties that come with autism are hard, impossible sometimes, it’s also the reason for his joy. It’s the reason he is carefree, even in a large public spacewith people all around and their attention drawn to him because of his squealshe is joyous, and his sole intention is being happy. It’s the reason he loves as strongly and absolutely as he does. It’s the reason we celebrate every little achievement with cheers and silly dances. It’s the reason his beautiful face lights up with mischief and wonder when he giggles for no apparent reason. It’s the reason he does not care about the nasty, troubled world around him and lives in his bubble of perfection.

It’s the essence of Luca. And I am beyond thankful for him.

I look at him now and I take note of how much he progresses each and every day. I look at him giggling on a trampoline, or screaming with glee on the swings, enjoying the swimming pool on holiday, and I hope. I hope for a time where this world accepts that cute, funny children with autism grow to be beautiful, endearing adults with autism. I hope stares of disbelief turn into glances of acceptance. I hope I am raising a human being who can access every ounce of their potential in a world designed to make it more difficult for them.

I don’t think I’m done grieving for the parenting job I thought I was going to have. Those images that flashed through my mind during a boring day when I was round with baby and pregnancy weight still creep in like a ninja, and I fight to stay present, to parent the child I was blessed to have and not the child I allowed my overactive imagination to conjure up.

I still have days. But I’m learning. Learning to let go of all the things I thought I wanted for him. Learning to want new things, to experience a different kind of parenting journey, learning to let him guide me, learning to just let Luca be Luca. Because he is really, really great. Just as he is. After all, acceptance starts at home.”

Courtesy of Amy Hamilton

This story was submitted to Love What Matters by Amy Hamilton. You can follow their journey on Instagram and on their blog. Submit your own story here, and be sure to subscribeto our free email newsletter for our best stories, and YouTube for our best videos.

Read more powerful perspective from special needs moms:

‘My husband took the diagnosis as an insult. ’What is your problem?’ He began to cry, ‘I just don’t want anyone to hurt him.’: Parents to son with autism say ‘he is meant to be exactly who he is’

‘That’s so sad.’ But we are NOT sad. I just wanted to squeeze him so hard and run right out of there.’: Autism mom says ‘His diagnosis is actually his superpower’

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