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The Narrative Needs to Change Around Parenting Children With Special Needs

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Editor's Note

Hi there, this is just a quick note to let you know that you’ve reached one of our older stories here on The Mighty, and it contains some outdated language. We’ve updated our editorial guidelines, and no longer use “special needs” to refer to children or adults with disabilities. “Disabled” is not a bad word, and children with disabilities have human needs, not special needs. You can learn more about the reasons for this change here. We’ve updated our vocabulary, and we hope you will, too.

I’ve spent a lot of time reading blogs over the past few years regarding disability and disease. Much of that time I’ve spent also reading blogs about parenting children with special needs. The over-running theme in many of these articles is one of burden and sadness. While I don’t disagree that it is hard to raise a child who has considerable needs, I also believe airing my laundry to the world about the difficulty is not the right thing to do.

I even got caught up in it.

You can scroll my personal blog and read entries full of pain, agony and frustration. There are letters to people about what they should and should not say, and there are entries about the grief and pain I was feeling as a mother. I got caught up in the narrative often forced down our throats. The media want us to believe raising a child with special needs is hard, a burden and impossible for anyone who is not super human in strength and mental well-being. The truth in all of this is that whether you have a child with special needs or not, parenting in any capacity is hard.

Every single child comes with a personality, skill set and development timeline. Biology determines most of this before he or she even enters the world, and we as parents are required to navigate raising the child. There are children who are spirited, defiant, angry, sad, clingy, picky eaters, suffer from separation anxiety, have colic, and the list can go on and on. Every child is unique, and parenting any being from birth to adulthood is hard.

But I refuse to say that because my child has diseases or developmental delays that my situation is harder than any other parent in the world. Our set of circumstances are unique, and we are presented with making choices I never dreamed of making, but at the core I am still raising a little boy who loves dinosaurs, monster trucks, coins, animals, swinging, jumping and playing in his sandbox. When I list that out, it sounds like a 3-year-old. It’s funny because… he is 3! He doesn’t know he’s sick. He doesn’t know he’s delayed, and none of the children around him seem to pay any attention to his differences or what we face.

I got caught up in the fact that he was different, not realizing every single child who surrounds us is different. I watch my friends struggle to parent their healthy children and face making decisions they also never dreamed they would have to make.

There is no preparation for parenthood.

Once you have a child, it’s all a process of learning on the job. I have friends who have had to learn to parent strong-willed children, ones who have had to learn to parent sensitive children, and others who have had to learn to parent children with separation anxiety. When I started to surround myself with other parents, I began to realize every person faces challenges and adversity every single day.

Back then I was caught up in what he could not do and engulfed in a disease I was afraid would take him too young. I was not living in the moment and enjoying who he was becoming as a person.

I’ve seen this narrative over and over — on websites, news publications and blogs. The stories continue to validate that it’s difficult to parent a child with special needs, that no one understands and that our struggles are harder than everyone else’s. I’m going to go out on a limb as a parent to a child with several life-threatening diseases and say my life is not harder than any other parent raising a 3-year-old. I have a child who has meltdowns over how I look at him, cries when he doesn’t get his way, gives the most amazing hugs, loves to snuggle and watch movies and take walks with me.

I hope more parents feel empowered to share the positive stories of raising a child with special needs. The most important factor in why I’ve changed my feelings about this topic is that my son is going to grow up to read and understand what I’ve said. He might have motor processing delays, but he is incredibly intelligent and also sensitive. I would never want him to see my entries riddled with grief and think he was a burden.

While my own grief and sadness has been a part of this story, it cannot be a part of his story. His story is what is important. He is a child beating the odds each and every day, and he does it with a smile on his face. As he grows I want him to know I fought hard for him not because he has special needs but because he is my son. If he would have been born with a body that had no issues, I know in my heart I would still be the feisty fighter I am. He is my cub, and I am his mama bear.

All any parent wants is for their child to be happy, taken care of and to grow up with fun memories. That is what I plan to do as his parent. He doesn’t need to know all the hows and whys of what we did, and he also doesn’t need to see any more blogs about how difficult it’s been to raise him. Raising any child is going to be challenging, but it is not difficult to be a parent if you have genuine love for your child.

What is a narrative you would like to see change about parenting?

Follow this journey on Without a Crystal Ball.

The Mighty is asking its readers the following: Describe the moment someone changed the way you think about disability, disease or mental illness. Check out our Submit a Story page for more about our submission guidelines.

Originally published: June 9, 2016
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