My Friends Think I’m Flaky – But I’m in Hiding as A Special Needs Parent

Many little girls grow up with the dream of being a mommy. I was no exception. I spent my entire childhood preparing for the role. I played house, I practiced fixing owies, heck, I even gave birth to a Cabbage Patch doll in my bedroom. I thought I had it down, that I had mastered the art of child-rearing. I expected that the hours I put in rocking my baby dolls, along with instinct and intuition were sure to make me the mother I had always dreamed of being. The mom who fell into the role of motherhood with simplicity and ease.

I wanted to be the mom that baked cookies and kept a clean house. The mom that never yelled and was always available to her children. I’d rock an adorable topknot while wrestling with my babies on the floor. I’d be that mom. But more than anything – I wanted to be the mom I had when I was growing up. One that was involved, easy-going, and was literally bursting with love at every seam. I wanted to be a mom that I could be proud of, that my children would be proud of.

To an absolute fault, I believed I was prepared for what was to come. However, I didn’t realize that when it comes to motherhood, and basically anything in life, you can’t prepare for the unexpected.

When my husband and I were expecting our first son, a routine ultrasound showed a soft marker for Down syndrome. It triggered a bunch of additional testing, a ton of anxiety – and a lot of questions. What would our life look like if we had to parent a child with special needs? At the time, I convinced myself that I could handle it – that my husband and I could handle it. We spoke openly with our friends and family about our tests – and when the word came in that our son was clear of any chromosomal abnormalities, they all celebrated with us.

I’ve always found it cathartic and important to be transparent about the good, the bad, and the hilarious that comes with life. There is always someone who can relate – which is helpful when you’re feeling completely lost and alone in uncertain times. This is why it’s new for me to keep something like my son’s recent challenges so close to my heart. As his mom – I’ve felt this incredible pressure to protect his innocence and the world’s interpretation of him. 

I’ve always known my son was different. It started when he was wiggling around in my womb – earning himself the nickname ‘wild child’ – one that still rings true 4.5-years-of into his life. When he came into our world sporting blonde hair and piercing blue eyes – a rarity when both of your parents see the world through brown – we knew he was certainly one-of-a-kind. 

By 4-months-old, our son stopped sleeping. And I know parents claim their kids don’t sleep – and I feel for those parents. But what I’m talking about here is no naps during the day, up-all-night, ‘mama needed to start antidepressants because she was so exhausted’ type of sleep deprivation. Yet, despite all of this – we had the happiest baby on the block. A kid who could truly function without sleep – and not just function, but giggle and laugh, and eventually harbor enough energy to climb countertops and literally hang off of the chandeliers. 

Not long after my son turned one, new behaviors started to rear their head and my happy-go-lucky baby slowly started to fade into the background. When something as simple as a redirection or a ‘no’ would trigger a 30-minute tantrum – I chalked it up to terrible-twos…starting at the early age of one. 

Up to that point, my son had typically been ahead of his peers in his development. He crawled at six-months-old and walked at nine. He knew his entire alphabet by a year old and was identifying letters and numbers before 18-months. 

My friends were always in awe of just how advanced, intelligent, and wild my kid was. And eventually, it went from being in awe of his intelligence to shock of his wild and care-free behavior. Because here’s the thing I’ve learned – wild behavior is only cute until a certain age, and then it goes from cute to “can this rub off on my kid?” or “wow, he must keep you really busy” and even “why don’t you try this to stop that?” While these comments may seem innocent to some – to me, they broke my heart.

My instinct was telling me something more was going on with my child, and as friends and even family began to speak up about how to correct his behavior, I became more adamant to protect him.

Around 2-years-old my son’s behavior had hit a new level of extreme. Tantrums were lasting anywhere from 30-minutes to two-hours and included behaviors such as kicking, screaming, punching, and throwing. He was growing more and more frustrated with simple tasks – and his separation anxiety hit an entirely new level of extreme. 

Everything with our son has been extreme. Lack of sleep in our home was – and continues to be – extreme. His separation anxiety – extreme. Navigating the ‘terrible twos’ – you guessed it – extreme. 

He’s always been smart; he’s always pushed boundaries – and he’s always fallen into a category we’ve come to know as “spirited”. As he’s grown older, however, he’s gone from a curious wild-child to a sensitive spirit just waiting to erupt. 

He has triggers and passion. Strong-opinions and deep associated fears. 

He refuses the leave the house.

He refuses to get dressed.

He refuses to do anything that requires a redirection from something he’s come to find comfortable. 

The word “no” is a trigger. 

Transition is a trigger. 

Tags on his clothes is a trigger.

Everything these days appears to be a trigger.

It makes going to the grocery store hard, the toy store impossible, and now, it even makes talking on the phone or hanging out with friends a minute-by-minute decision. Because of the overwhelm, the exhaustion, and the unknowns – I’ve become the flakey friend. Canceling plans last minute, changing plans around – telling friends I can’t meet them at the McDonald’s play place because I know leaving will draw a dramatic scene. Some people understand – but most don’t. 

In the beginning, I tried being open about what we were facing but the feedback was always the same: more discipline, more boundaries, less giving in to his needs.

This experience and fighting for my son – trying to find support for him and his needs – has been draining, isolating, and lonely.

With COVID19 shutting down all support services, diagnostic assessments, and treatments, our son remains undiagnosed. He’s lost his resource consultant, his sense of structure and stability – and his behaviors have been growing more and more extreme as social distancing drags on. As much as I want to scream how hard this is from the rooftops; I remain fairly quiet because the fact of the matter is – we still don’t know what we’re facing. 

The truth is, special needs parents are hurting more than ever right now. Every sense of normalcy we’ve worked so hard to create for our children has been ripped away from under our feet. Those pretty, color-coded schedules circling the internet don’t work for parents like us. Homeschooling through Zoom and virtual classrooms don’t always work for our children. Sitting still, taking direction – being contained to a house with no access to parks or IEPs or play therapy makes every single day daunting. And hardly anyone can understand, except for other special needs parents – but most of us are trying to protect our children, so we don’t exactly talk about it.

For me, I don’t want the first thing people think when they see my son is “oh, there’s her kid – he has ADHD or Sensory Processing Disorder”, – or whatever we might be facing. I want them to look at my son and see a happy little boy who approaches life with a little bit of quirk and a lot of heart. 

Whatever my son is facing, he’s not facing it alone. He has his dad and me by his side every step of the way. We’re laying all the groundwork to get him the support he needs to go through these early years of life with confidence and pride in who he is – and I refuse to expose him to anyone who will do the opposite. 

My son is sensitive, kind, compassionate, loving, fun, vibrant, and yes, he is wild.

There is not a person in this world I would allow to kill his spirit.

And to the friends who love him and cherish him as their very own – I’m eternally grateful. Because they’ve never asked for an explanation, they look past his hard days and see him for who is – a beautiful, blonde-hair, blue-eyed little boy with so much greatness to offer the world.

This post was submitted by a New Mom, Who Dis? contributor who wished to remain anonymous.  We’re so thankful she shared her story.

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2 thoughts

  1. Sounds like he needs a sensory diet. I have an autistic son. Also has he been checked for PANDAS? If not I would recommend that. Hang in there!

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