5 Must-Know Things For The Special Needs Parent

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Special needs mom kisses son with autism holding Toy Story's Woody doll on cheek
Courtesy of Ellie Whetzel

‘I think we can say with confidence that Leo meets all of the criteria for Autism Spectrum Disorder…’

I sat on the floor of the room where my son, Leo, was being assessed, absorbing the doctor’s words. I reached with confusion for the tissue box she set out before me, only to realize my cheeks were stained with tears, silently streaming down my face.

I knew before those words were uttered. Before she handed me that piece of paper with his newly minted medical diagnosis… I knew. Yet, there was so much I didn’t know. So much yet to learn. Here are 5 things every special needs parent should know as they begin their journey:

1. Don’t compare to others

Your child possesses qualities which are uniquely their own. It is often said, ‘If you’ve met one person with Autism, you’ve met everyone with Autism.’ Let me introduce you to my boy. Leo is 10 with moderate to severe Autism.

Nonverbal, or pre-verbal, depending on who you ask. He can request for cheese, chicken, and a variety of his favorite food items, but is unable to express (verbally) if he is sick, why he’s upset, or even happy.

We don’t spend an inordinate amount of time focusing on what he can’t do, though. We work on those challenges daily, but they have not, and will never, define who he is.

Who he is, is kind, affectionate, courageous, and genuine to his core. He’s a brother, a son, a friend. And a great many more things to many others.

His joy is pure and unfiltered; his beaming smile on display, when presented with his favorite cheesy slice of pepperoni pizza, or the wind brushing against his cheek. Or the feel of dirt sifting between his fingers.

His giggle is beautifully piercing, and infectious as he awaits tickles from Mom and Dad. Or watches a scene from one of his most cherished films, as if he’s experiencing it for the very first time.

Leo is funny, and smart, and wonderfully complex. And in the words of my mom, since Leo was tiny – Leo is love.

He is my sweet boy. He has been since I cradled him in my arms for the first time, nearly 11 years ago. Before I had an inkling that Autism would tag along for our journey together. Before IEP’s, and therapies, and all of the challenges that encompass. Always, my sweet boy.

2. You will feel judgement and criticism

Some years ago, during an IEP meeting for Leo, the term ‘helicopter mom’ to describe my mothering was meticulously inserted into the conversation, by a Special Education Department head at the time, as a means of dismissing concerns I was raising.

While the dichotomy of rationale or causes behind Autism may have evolved over the years; parents, and mothers in particular, still in many instances face the brunt of blame and criticism for their child’s challenges.

From not being maternal enough to being overly so, somehow that blame persists. Consequently, perpetuating the idea there is something that requires fixing within a child with Autism, or any disability, rather than cementing the fact they are who they are meant to be, and perfectly so.

I am extremely fortunate to have been on the receiving end of incredible support since beginning this journey. Yet, the criticism by a few, whether overt or strikingly inconspicuous, still lingers.

To the parents, many of whom are their own worst critics, who love fiercely and advocate with all their might. For those who feel the weight of the world on their shoulders, whose worries remain long into the night, filtering through their dreams… concentrate on the light and love of your amazing children and rest assured, you are enough.

3. Keep hopes and dreams strong

‘What are your dreams for the future?’ Not long ago, I stared blankly at my computer screen, contemplating the morning’s check-in question for Leo’s virtual schooling.

A common one frequently posed to young students along with, ‘What do you want to be when you grow up?’

Scrolling through the list of responses from Leo’s peers, my heart swelled – what was once a question, not too very long ago which caused me heartache and uncertainty, gave me hope.

‘Leo, what are your dreams for the future?’ I asked my sweet boy, sitting beside me. He stared back at me, his magnificent green eyes filled with wonder, while smiling widely, vocalizing his joy in that moment.

He wasn’t able to tell me, in words. But my boy has dreams, like any other child. They may look different than those of his neurotypical peers, but I will do everything in my power to help them be reached.

Dream big, my boy.

4. If you want to know how to treat a child with special needs, look to siblings

Leo’s ‘baby sissy,’ Eva, hangs on every move he makes. She doesn’t find him ‘different,’ but rather the coolest kid around.

‘Bro Bro!’ As she so adoringly refers to him, is her idol. And while we’ve done as much as we can think to do to help facilitate their connection, certain bonds are beyond explanation.

She watches him with intensity, keenly aware of every vocalization, every script…every stim… She is fascinated by her brother, absorbing each extraordinary quality he possesses.

I am infinitely grateful Eva has Leo to teach her, albeit unwittingly perhaps, the importance of embracing one’s passion, and marching to the beat of your own drum, despite pressures by some to conform to social norms.

I am certain she is already soaking in every ounce of joy he emits into the universe and that she will continue to understand and emulate acceptance, love, and kindness through every one of their beautiful interactions.

5. The challenges can feel insurmountable

Some years ago, during a conversation with my husband, Andy, I stared pensively at my boy, wondering what life had in store for him. ‘It’s hard sometimes,’ I said softly, perhaps more so to myself than to Andy sitting across from me. ‘Life is so ambiguous,’ I continued, ‘with so many questions that have yet to be answered for Leo.’

Andy’s gaze slowly turned towards our boy, his concerned expression gently giving way to one filled with peaceful certainty. ‘It always amazes me,’ he began, ‘how even today there is still so much negativity surrounding Autism.’

‘One of the best things about Leo,’ he remarked, ‘is how genuine he is. When he’s happy, he lets you know. When he’s upset, he lets you know. His emotions are pure and there is no pretense. The sad part is people will say this is abnormal. When really, this is how more people should be.’

I listened, as Andy went on, his words giving me strength with each passing syllable. ‘Somewhere along the way someone said Leo is going to be different. We’re going to wire him differently. Not everyone will understand him, but that’s okay. And even if he only touches these two people’s lives, he will have made a difference. Of course there will be frustrating times ahead. But we will never allow it to affect his quality of life. And if this boy, who faces constant challenges, can wake up smiling every day…he’s going to be okay.’

Tears quietly streaming down my face, I allowed my husband’s beautiful message to seep in. It is difficult to evade the worries of tomorrow – and the months and years that follow. But what we can control is making sure our children with special needs will always be cared for and loved wholly and unconditionally.

And when I close my eyes and imagine a grown up version of my sweet boy… the future, while many parts unclear, presents one constant, vivid, and unwavering certainty. That radiant smile existing always, and his beautiful soul touching our lives and so many others along the way.

Special needs family embrace on blanket during autumn
Courtesy of Ellie Whetzel

Parenting a child with special needs is hard. Yet, when I stop and think about our journey over these past 10 years – about the stressors in my life, related to raising a child on the Autism Spectrum – those feelings are emphatically trumped by the incredible joy this sweet boy continues to bring forth into my existence.

For those Moms, Dads, and Caregivers at the starting point of their own journeys, there will always be stress and worry rearing their ugly heads. But just know you will receive invaluable lessons from your child, who invariably views the world in the most beautiful and magical light. Follow their lead.

This story was submitted to Love What Matters by Ellie Whetzel. You can follow their journey on Facebook. 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 stories from special needs parents here:

‘At least he doesn’t…’ As a special needs parent, I hear this all the time. Each one takes a little slice out of me I can’t fill back in.’: Special needs mom urges you to ‘validate’ those who ‘give you a glimpse of their challenges’

‘We don’t get to hear how our child’s day went. We worry parents haven’t taught their kids about differences before they enter the classroom doors.’: Special needs mom shares candid reality of school drop-off day

10 Things Special Needs Parents Wish They Had

‘You don’t fit in. Old friends move on without you. They go to theme parks. You go to hospital rooms.’: Special needs mom pens ode to ‘the parents who feel like they don’t belong’

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