“It was at 18 months old when we really started to observe a difference in our son, Jacob. Up until this point, when we questioned anything, we would put it down to, ‘Oh, he’s still so young, all babies do that.’ At age 1, Jacob started walking and he started to say a few words. We were overjoyed with emotions. As the months rolled on, Jacob started to say a few more words such as, ‘Mom,’ ‘Dad,’ ‘bus,’ and ‘plane.’ It was a very exciting time.
At around 18 months old, it all changed! I would say to my husband, ‘Have you heard him say a word recently?’ or, ‘He is really not looking at us as much as he used to.’ Over the course of a few weeks, Jacob had lost all of his words. Alongside this, Jacob had also lost all eye contact, became a very picky eater, and also started to wake up a lot during the night. We now know this is called the ’18-month regression.’
On our first visit to the pediatrician, he said to us, ‘Wait and see. He is still very young. Come back to me when he is 2 years old.’ At 2 years old, we returned to the same pediatrician, even more concerned Jacob had not gained any speech at all. We also brought up the word ‘autism’ and were quickly shut down: ‘He does not have autism.’
We went away from this appointment extremely unhappy, so we decided to get a second opinion. We got a referral to a clinical psychologist and this was the best decision we ever made. Upon hearing Jacob’s story, this lovely lady quickly recommended we book him in for an autism assessment, and we did.
At the age of 2-and-a-half, Jacob and our family sat in the office and heard, ‘I am diagnosing Jacob with Autism Spectrum Disorder, level three, requiring very substantial support.’ I cannot accurately describe the many emotions which ran through my mind when I heard this, although I will tell you I felt a lot of relief. We could finally move forward and were able to figure out the best plan of action to help support Jacob to live a happy life.
Of course, we felt sad emotions as we grieved a life we had imagined for our son. It is okay to grieve, I had to learn that lesson. My husband took longer to grieve. He took it harder than I did, and he didn’t see the light at the end of the tunnel. It has taken over a year for us both to come to full acceptance of this new life and adapt to our new way of living. Now that we have, we want to help others come to acceptance as well.
We have had a few experiences when we are out in the community. Some people haven’t been so accepting. One time we were at a dentist appointment, and I had to wait in the waiting room with the kids while my husband had his turn. Jacob has a rather loud stim where he yells at a high pitch. Anyone who knows Jacob knows this means he is happy. However, I could feel the staring and people shaking their heads at him while we waited there.
I tried my best to ignore them, until we were getting ready to leave and someone said loudly, ‘Thank god he’s leaving.’ I whipped my head around as my husband explained, ‘He has autism.’ My blood boiled, and from that moment on, this event fueled my passion for wanting to make the world a much better place for my son to live in.
My advice for new autism parents is simple—you are the expert! You are with your child all day every day, don’t allow any professionals to impose on that. You decide what’s best for your child and family, and you demand a second opinion if you are unhappy with the first. I would also advise you to connect with others going through the same process. The amount of support I received from other autism parents truly made for a much more positive journey.
Jacob is incredible, already showing so much progress through early intervention and living his life happily. Are we worried about the future? YES! However, I constantly need to remind myself to focus on the now and try to live our best family life outside of therapies and interventions.
It is so easy to become all-consumed by Jacob’s therapies and autism life—you can begin to feel overwhelmed. Take quality family time, take a break—you really do need it. Jacob may be non-verbal, but he has A LOT to say. He communicates in a different way and brings us into his world of wonder. In coming to acceptance, we learned to step into his world and see the happiness different things give him.
Jacob loves the water, a very simple thing. But the smile on his face when he splashes at the beach brings us all so much happiness. He is happy, and this is all that matters. Jacob is also big into music and will hum along to different nursery rhymes, and it’s just the best thing to hear.
The reason I share our story is because we are not alone. I use my social media platforms to help support other autism parents going through the same journey because it is not easy. I hear numerous stories of parents being turned away, and how hearing our story helped them to stand up for their rights and demand an autism assessment for their child. I hope to create a positive community that can support each other to be able to advocate best for their children. We also want the entire world to become more accepting and aware, so we can have a more inclusive world.”
This story was submitted to Love What Matters by Jessica Otter of Australia. You can follow their journey on Instagram and YouTube. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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