Without a Crystal Ball

Our Journey through Chronic Illness & Autism

  

I have spent a lot of time reading a lot of blogs over the past few years regarding disability and disease. Much of that time I have spent also reading blogs about parenting children with special needs. The media and 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 that has considerable needs, I also think that 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 blog and read entries that are 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. In many ways, I got caught up in the narrative that is forced down our throats by the greater media. They want us to believe that raising a child with special needs is hard, a burden and impossible for anyone that 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 the simple answer is that parenting in any capacity is really hard.

Every single child that is born comes with a personality, skill set, and development. Biology determines most of this before they even enter the world, and we as parents are required to navigate raising the child and all of their DNA. There are children that 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 until they reach adulthood is hard. I refuse to sit on a pedestal and say that because my child has diseases or developmental delays that my situation is any 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 that 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 has no idea 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 that every single child that 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 that have had to learn to parent strong willed children, ones that have had to learn to parent very sensitive children, and others that have had to learn to parent children that have separation anxiety that leaves them with no time alone. When I started to surround myself with other parents, I began to realize that every person faces challenges and adversity every single day. What I was doing was getting caught up in what he could not do, and getting engulfed in a disease I was afraid that would take him too young. I was not living in the moment and enjoying who he as becoming as a person.

This is something that gets written about over and over. We can see it on huge websites, news publications and blogs about how difficult we have it as parents of children with special needs. The stories continue to validate the same narrative that it’s difficult, no one understands, and that our struggles are harder than everyone else. I am going to go out on a limb as a parent to a child with several life threatening diseases, that my life is not harder than any other parent raising a 3 year old. I have a child that has melt downs about 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 loves to take walks with me. My hope is that more parents feel empowered to share the positive stories of raising a child with special needs.

The most important factor in why I have changed my feelings about this topic is that my son is going to grow up to read and understand what I have said. He might have motor processing delays, but he is incredibly intelligent and also very sensitive. I would never want him to see the 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 that is 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 that I fought so hard for him not because he has special needs but because he was 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 fiesty, fighter that 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 in the media about parenting?

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2 thoughts on “Why the Narrative needs to change about Parenting Children with Special Needs

  1. Kira McCall says:

    Good for you! I’m glad you have made this decision to stay positive about everything. I’m glad you’re making peace with what you have been given: A beautiful, loving Sign-Sign. I think when he grows up, he will see that yes, it was hard at times, not simply because of his special needs, but because you wanted the best for him. I will continue to hold out my light for you all and continue to pray that he continues to beat the odds and grow up to be the best Sign-Sign he can be, whatever God’s purpose is for him.

    Like

  2. As my children get older, I find it easier to throw out the “expected” and go with “what is”. So it takes longer to learn things, so they might be at home past 18 years old. I’m actually okay with that. They’ll get there, it might just take longer. They don’t need to be compared to the fastest learners in the group. Every child has challenging seasons, and difficult moments thanks for the reminder! Parenting is hard.

    Liked by 1 person

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