“Autism doesn’t come with a manual, it comes with a parent who never gives up”
Sandra A. Hernandez, 29, is mother of two boys. Her youngest, Sebastian, 4-years old, was diagnosed with Autism on January 16, 2015 at age three.
Shortly after starting daycare in early 2014, the teachers noticed some developmental delays on Sebastian. Although they conducted an evaluation themselves, they encouraged his parents to take him to his pediatrician and seek referral to a specialist. And it was they who will give the diagnosis of Autism Spectrum Disorder(ASD), placing him on the moderate level of the spectrum.
With a disorder that has so many unanswered questions, there is not better expert to speak on it than a parent who is living their own day by day journey with an autistic child.
When did you first notice symptoms?
I definitely noticed them. Just his behavior was different than his brother’s and his cousins’. And I’ve known about autism, I have a friend that her son has autism so I was familiar with it. It was just something that I always thought about. Certain things that he would do when he was younger, like I would joke that he was anti-social but I kind of had a feeling it was something else. So yeah, mother’s instinct.
What has been the most difficult aspect of the diagnosis?
The most difficult, I wouldn’t say the diagnosis itself is the difficult part but what comes after. Like in the future, knowing that he has autism isn’t difficult, it’s just thinking about the future. The difficult part for me is thinking that he is not going to be able to be independent. He’s developed so much since the diagnosis and part of me says ‘it’s just his development and his pace’ but then there’s the diagnosis. Him having autism isn’t difficult is what comes after the diagnosis, is just the tomorrow. Like he’s doing good in certain areas but there will be other areas where I’ll see that are more what you hear of the typical stories of autism, like the tantrums or how he can’t control himself with his sensory issues. But the diagnosis itself doesn’t scare me, It’s just the future, how he’ll develop and how he’ll be able to take care of himself when I’m not here. That scares me.
How do you cope with his behavioral differences?
It’s hard because he’s gonna be five soon, and yeah he’s the little brother and Julius his brother does see him as a baby but the reality is that he really isn’t a baby, physically. But thankfully at this point, Julius does think of him that he is. I know that is going to go away, the bigger Sebastian gets, physically, it’s not going to make that much sense to Julius knowing that he was five just 17 months ago and that now his brother is not doing the things that he was doing when he was five. At this point is not that noticeable but it’s gonna get there. And it’s just like anything else with this, I just take it day by day.
What are your hopes for the next five years?
We were so lucky to find a school that specializes in kids with disabilities and autism is something big at his school. Unfortunately, it only goes up to second grade and honestly I’m at a blank at this point. I’m scared, but I’m thankful that he is where he is. Where they’re focusing on his needs and I hope he’s able to go to mainstream. I hope he’s developed enough to where he might need some assistance but not all-day assistance. So my goal for him IS mainstream in hopes that he’s able to take on that task. If I see that mainstream isn’t the place for him I would like to find a school for him that’s going to focus on his needs. But that’s in the future, that I’m not so focused on right now. It’s day by day and day by day I hope he learns more and I hope he’s able to speak and do everything that will give him the capability of being in a mainstream school.
As a mom, where do you find your strength to deal with this day by day?
In him. He gives me that strength. Evey morning,he comes to my bed, he wakes me up with a kiss all in my face and that’s where my strength comes from. It’s me seeing that he comes and he’s acknowledged that before, I used to go and give him kisses every morning to wake him up and now he does it to me. And that’s me seeing that he’s learning. That he’s seeing that routine of saying good morning and giving kisses. He might not say it, but that’s his good morning to me. With that kiss that’s how he wakes me up physically and he gives me that strength. Like it’s another day, another day of learning, of working hard and get him where we need to be.
What is one piece of advice will you give another mom going through the same situation as you?
I don’t think there’s a mom going through the same situation as me, ever. Any mom that has a child with autism has their own journey. Learn your child, see what your child likes what your child doesn’t like. I would advise you to push your child a little bit. Get him outside his/her comfort zone. Every day, do something that is going to get them outside their comfort zone. A lot of people might say to not take them out because they might not be comfortable or sensory overload. Pay attention to your child, learn what their limits are and push them, slightly. If the only thing you’re gonna do is benefit them, keeping them in a bubble or keeping them indoors or keeping them away from situations that are going to make them uncomfortable is maybe not the best thing. Because the more they’re exposed to it, the more that’ll be the norm for them. Sometimes it might not work, but as the mom, you’ll know that it’s not going to work or that it’s too much. Don’t be scared to push the limit a little bit, just for their benefit.