‘I said, ‘Ask me anything!’ My 7-year-old niece was quiet and hesitant. ‘Is he going to be like this forever?’: Mom of autistic child offers support,’ Know there are so many of us with you’

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“‘Is he going to be like this forever?’ My 7-year-old niece was quiet and hesitant with her inquiry.

Her mom and dad have talked to her about my son’s autism, and I was thrilled when they told me she had some questions for me. I love spreading autism awareness. I especially love talking about my sweet boy and all the unique, wonderful, and challenging pieces that come together to make him so very special.

I could barely contain my excitement that someone so young was taking an interest in learning more about autism. I said, ‘Ask me anything!’

‘Is he going to be like this forever?’

I wasn’t expecting that. I was certain she was going to ask about why he screams so much, or doesn’t listen to her, or why he lines up his toys over and over again. I started rambling on and on about how he will always have challenges and possibly be delayed for his age; but he won’t stay like this. I’m quite sure I lost her.

I do know I avoided saying ‘yes.’ But I couldn’t say ‘no.’

I don’t allow myself to think too far ahead when envisioning my son’s future. There is so much fear and worry about the unknown. The stress over it tends to send me down a spiral to nowhere.

When my son was almost 2 years old, the long road to his autism diagnosis began. I remember the day his pediatrician told me he had failed the autism screening at 18 months. I knew nothing about autism, and left that appointment feeling shocked and worried. But hope and denial kept the real gut-wrenching fear at bay for a few more months.

I felt helpless most of the time. Progress was happening all around us in classmates, our friend’s children, and our daughter. My sweet boy wasn’t talking, and he was growing increasingly frustrated. His sensory sensitivities and how much his developing system could handle was, and continues to be, so unpredictable. He would often experience fear, sadness, anger, confusion, and pain; and all his senses overloaded at once. He would completely lose control.

I cannot count the number of times my husband or I have had to carry his flailing, screaming body out of public spaces. The park visits, birthday parties, and special events cut short or skipped altogether. The full grocery carts abandoned. Of course, there are also the times when I just broke down and sat and cried with him. Every outing needs to have calming, exit, and recovery strategies in place or we won’t go.

By the time we reached the meeting with the psychiatrist, where the diagnosis was officially delivered to us, we had been through months of evaluations, research, and waiting. And while it still stung, we expected to hear what the doctor had concluded.

The months that followed were filled with more research, hectic schedules, parent trainings, speech therapy, occupational therapy, ABA therapy, and visits with every other kind of MD in-between. We learned about scripting, stimming, and eloping. We continued to deal with episodes of smeared feces, pica, and other behaviors long after it was considered typical toddler behavior.

Then came the aggression, self-injurious behaviors, and anxiety. These are things you never imagine discussing in meetings about your five-year-old.

It’s been recommended parents should ‘choose their battles.’ Autism parents don’t always have that choice. We face some of the same battles, day in and day out, over things like chicken nugget brands, missing treasures the size of a crumb, and change of ANY kind.

The days can be emotionally heavy and exhausting. Your mind cannot help but wonder how long your child will endure these challenges. Many behaviors are phases. Some are not.

We know the anxiety some parents face. The loneliness felt from long days spent with a child unable to read your emotions. The difficult medical and educational decisions you struggle to make. The push-pull of telling yourself it’s ok, when it really doesn’t feel ok. When your patience has been depleted. We have felt the lows and celebrated the victories too. We know the fear and the worry you wrestle with daily, and the immense pride you feel over the slightest progress.

Know there are so many of us with you.

We continue to learn from our sweet boy. For us, autism is in the moment. It’s unpredictable. Some days it is two steps forward and one step back. It’s phases you cannot wait to get out of, and moments you want to freeze in time. It’s taking the long way. Routine and repetition. Pure innocence. Unconditional love and loyalty. It’s falling down and getting back up.

Eventually, our son learned to use some phrases to communicate in his day-to-day life. When he wants you to read him a story, he’ll hand you a book and say, ‘Once upon a time…’  And he says, ‘You’re welcome!’ whenever someone on the television says, ‘Thank you.’ He also sings the cutest song to himself, several times a day, to fend off anxiety.

He has learned so many words, but often they are tucked away and take a lot of work for him to access. Can you imagine how frustrating that would be? This little guy works harder than any of us, and his resilience continues to amaze me daily.

We still struggle with meltdowns out in the community. Bystanders don’t understand the complexity of what our boy is going through. To them, he just looks like a kid that seriously needs some discipline.

That’s really too bad, because getting past what meets the eye is where the good stuff lives. Like when his whole face and body light up because he’s happy to see someone, something, or some place. How he studies the world upside down, sideways, and from every other possible angle.

For someone who ‘lacks appropriate eye contact’, when he does look at you, he REALLY looks at you. He studies every wrinkle and freckle, he touches, smells, and tastes.

He is so complex and yet celebrates such simple happiness. He is enamored with his reflection and dances with his shadow. He says, ‘Hi!’ to strangers. And if it involves jumping, bouncing, or spinning, he is IN! The faster the better. He loves music, blowing out birthday candles (it doesn’t matter whose birthday it is), and anything and everything to do with pirates, trains, and keys.

No doubt, this little man changed our whole world. We have a new perception of hard work, perseverance, and happiness. Every struggle along the way was just a stepping-stone to get us to where we need to be.

Autism has changed me. Sometimes I’m sleep-deprived, cold, or short-fused. But I’m undeniably braver, stronger, and better. I am so thankful for this boy. We are helping each other become who we are meant to be.”

Courtesy Lauren Emmett

This story was submitted to Love What Matters by Lauren Emmett. 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.

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