‘My family said, ‘I told you so.’ Why didn’t I notice it? I wanted to pretend it never happened.’: Mom first denies son’s autism diagnosis, now advocates for ‘acceptance, inclusion’

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“What’s this thing we call Autism?

Well, it is definitely different for everyone. For my family, it’s the hardest yet most rewarding journey we’ve encountered. It takes patience, strength, sacrifice, and will test every emotion you have almost daily. It’s when your child achieves a milestone, big or small, or even surprises you with saying what seems like something simple to others,  like ‘mama,’ and a moment of pure joy and pride takes over. That moment is full of hope, and hope is the fuel that drives us to keep pushing through the rough, the tough, and the ugly.

My son’s journey started like this:

Santiago was diagnosed at 23 months, just a month before his 2nd birthday. Being a first-time parent, I assumed Santiago was typical for his age. It wasn’t until he was diagnosed that it hit me. It was a slap to the face – an epiphany, if you will. I now had an answer to the question which would constantly wander in he back of my mind…’WHY?’

Courtesy of Samantha Ortiz

Santi was such a happy and very easy baby! But he would always be in his own little world; he made poor eye contact, hated loud noises, there was speech regression, I could go on.. With all these red flags, why didn’t I notice his Autism sooner? I honestly don’t know. It wasn’t until he was being assessed for speech therapy we were told there were ‘signs’ for Autism. That’s where it all started. A few weeks later we were on our way to visit a child psychologist to finally get answers. And we did. Receiving the diagnosis was life changing, both good and bad. In that very moment, time froze, the background noises faded and a million thoughts raced through my head. ‘Is he going to grow up to live a ‘normal’ life? Will he ever get married? Will he have kids of his own?’ I remember getting in the car that day, with the psychologists’ words replaying in my head, over, and over, and over. ‘Your son has moderate to severe Autism.’ I wanted to breakdown, cry, yell, run away with my thoughts, lock them up and return to my life and pretend nothing ever happened. Instead, I kept it all in because I needed to be strong for Santiago.

Courtesy of Samantha Ortiz

I read books, did extensive research and did whatever I could to better understand what my son was going through. I wanted to help him. No, I NEEDED to help him. If not me, then who?! Soon after, I advocated like a mother! I won’t lie, it was so stressful; try calling hundreds of different agencies, telling them all the same stories and being turned down! Oh, and don’t get me started with the insurance company! It only took me a week, sadly it’s not a long time compared to some. Some take months to be approved. We had speech, OT, Child Development therapies, and ABA starting at 40 hours a week, the whole early intervention sha-bang! I refused take ‘no’ for an answer. NO ONE SHOULD! All of this may seem like a lot, but it’s what my son needed.

Courtesy of Samantha Ortiz

Though he remained the same kiddo after his diagnosis, there was so much change going on in his life. He adjusted to his new, busy lifestyle fairly well. Better than me, I still felt broken. I still do feel broken at times. I grieved (probably not enough as I should have), my husband grieved, his family was in denial, my family was all, ‘I told you so…’ (they knew he was delayed in some areas, but I chose to ignore them). Eventually we got all caught up to the same page. (It is so crucial, I can’t stress it enough!) With the right guidance, help and support, our son has accomplished so much! Santiago started vocalizing at 3.5 years old which in itself was huge since he showed zero interest when he was first diagnosed. Autism has taught me how to be patient yet stern, it’s taught me advocacy, to always trust my gut, but most of all, it’s taught me how to love! It’s true when they say ‘love needs no words.’ If you know Santiago, you can tell he is loved, and he loves hard. He is such an outstanding kid. I’m not being biased, ask anyone who has ever met him! He has the softest voice, the sweetest hugs, the brightest smile, and the most contagious laugh. Man, we are blessed.

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Fast forward two and some years, and hey guess what? It hasn’t gotten easier! Santiago is 4 and a half, he is able to speak, but not communicate. AKA – Pre-verbal. Sounds confusing, right? Here’s an example: I can ask him, ‘Hi honey, how was your day?’ His reply would be, ‘How was your day.’ Total echolalia. He can repeat anything and everything you tell him. We are always working on his expressive and receptive language skills because I believe one day he will reply ‘My day was great mom!’ Heck, I’ll even take a ‘good.’ Along with his language delay, we struggle daily with sensory issues. He’s extremely sensitive to loud noises. We vacuum when he’s not home, use the blender in the garage and I can’t blow dry my hair unless he’s asleep. Yes he owns headphones, but they work 15% of the time. Once he sees the appliance it’s an instant tantrum.

Apart from some of our daily struggles, we are always amazed by him. He is so intelligent, his vocabulary has blossomed, he’s completely potty trained as of this year (highlight of my year), he’s starting to interact with peers, and he starts preschool this fall. I can’t wait to see the progress he will make!

Courtesy of Samantha Ortiz

He’s older now, and much bigger! His tantrums are definitely more ‘noticeable.’ They’ve intensified 100 times since his diagnosis. Truth be told, I’m scared. Scared that he’ll read people’s off-putting stares and negative vibes. Scared that he’ll be bullied for being different. I’m so, so, terrified of that. I am especially scared of the future, because I don’t know what it holds for my son. Living one day at a time makes it a little less scary. Luckily we haven’t experienced any rude comments or anything of the sort yet. Thank goodness, I don’t know how I would react!

Courtesy of Samantha Ortiz

If you’re reading this, and you feel my emotions or you can relate in some way, know you are not alone! I am so thankful for this wonderful autism community where we can all relate, support and comfort one another! Always remember autism doesn’t define your child, it’s simply just part of who they are. Our kiddos will never cease to amaze us. Remember even small milestones are huge achievements! All I want for my son’s future is for him to be happy being himself. We are proudly a neurodivergent family. We don’t ask for pity, all we want is understanding, acceptance and inclusion!”

Courtesy of Samantha Ortiz

This story was submitted to Love What Matters by Samantha Ortiz of California. You can follow her on Instagram. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

Read more beautiful stories of children with autism here:

‘She was rigid. Not normal toddler tantrums, but unbearable breakdowns. The pride I felt turned into worry.’: Mom of 2 kids with autism says they’ve given her ‘purpose, perspective’

‘You want to ride that roller coaster?!’ I asked my son in shock. ‘Sure!’, he replied. My heart was pounding. I was terrified.’: Mother of son with autism surprised by his enthusiasm, learns lesson in overcoming fear

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