Special not entitled, and other bitter pills to swallow

I’m going to write about something that won’t be very popular with special needs parents but I feel it is something that needs to be brought out and discussed.

Our beautiful children have special needs to help them reach their potential in life, but they aren’t entitled. I know that sounds harsh. I am a parent of two special needs children—one with autism and one was born with physical disabilities.

            As with anyone else faced with the challenge of raising a special needs child, I was in no way prepared. Not just for the logistics involved—the doctors’ appointments, the therapies, becoming an advocate and a researcher.

I wasn’t prepared to mourn the life I believe they should’ve been given, the life I should’ve been given. I mourn it in some way every day. Some days are better than others, but even after all these years, I still am brought to tears when we are faced with a situation which would’ve had a different outcome if only they didn’t have “special needs”.

My son with autism would’ve been able to handle the social aspect of team sports and would’ve been a football player. My daughter who wears leg braces would’ve been a dancer. Because of their special needs, they can’t.

My daughter still takes hip hop because sneakers fit over her braces and my son swims because the stress of the team success can be redirected to his own success.

They have to adjust. I have to adjust. The world around them doesn’t. But, it’s a bonus if it does.

Their teachers and coaches are incredible accommodating and enjoy having them, but we all know their limits and support them to meet their greatest potential.

            You might ask where I’m going with all this. Recently, I read about a dairy farm who made their own ice cream, and also grew a sunflower field around their store. They charge a dollar or two for people to walk through the field of sunflowers and donate the money to St. Judes. A family came through and they had two special needs children who were in a stroller and unable to walk through the field. They tried to push the stroller through the mud and uneven terrain, and were asked not to go through because of the damage they may do to the flowers and it was unsafe for the stroller. They were outraged and went to social media to blast the family-owned operation for not accommodating them—calling for a boycott of the business and even threatening to sue.

            From my perspective, as a mother of two very different special needs children, this is what I see—a family who has not come to grips with their children’s situation. They are angry and bitter, not just because they were denied entry into the sunflower field, but because they can’t just walk through like a typical family. They can’t go places and live care-free like a typical family and they aren’t ready to accept that yet.

Sometimes parents of special needs kids feel the rest of the world owes them. I know I envy the parents who don’t have to map out their day to make sure everything is accessible to their child before they show up. I even have to make sure we have food because I have a child won’t, or can’t, just eat whatever we find for lunch.

            There was another story I heard about a family with a small child who went to a children’s movie in a movie theater. Their child was developmentally delayed and didn’t understand they had to sit and be quiet during the movie. They ran up and down the aisles and yelled out the name of the characters as they appeared and were having a great time. However, they were also being a distraction and ruining the experience for others. The theater asked them to leave if their child couldn’t sit and be quiet. They were enraged and also threatened to sue.

            I get it. My son with autism couldn’t sit for a full movie until he was 10. Even then, I had to take my father to help with my other children so when the volume of the show got to him, we could go outside for a break. But, I didn’t take him to a theater and let him treat it like his own living room.

            I get how embarrassing it must have been and how unfair it must have felt. However, it is a disservice to the child to put them in a position they aren’t going to be able to handle and then blame those who point it out. You can’t punish society for having a child with special needs. You must also conform the best you can and not just expect society to conform to your child.

            Children has the right to an education, to be fed and cared for. They don’t have the right to go to a movie theater or to a sunflower patch and expect the rules don’t apply.

            Accommodations for people with special needs have come a long way. Are they perfect? No. Not by a long shot. But, making a scene and threatening to sue doesn’t help anyone and just fuels anger and animosity.

            Movie theaters offer times for children with special needs, when lights are left up and the sound is turned down. Disney and many other amusement parks offer accommodations for people with special needs to better access and enjoy their parks. Coaches, teachers, community leaders, all have become more open to working with parents of special needs children when the parents approach and discuss the possibility.

            In my own experience, I am very up front with what my children can do, and what they would need to succeed. By discussing this with others, we can gauge if it is a possibility. I can sense the openness with which they will embrace the idea and truthfully, if my child will enjoy it. By demanding and expecting, it leaves everyone angry and the child confused.

            Here is the thing. Whatever the experience, however the parent handles it...what is it going to teach the child? You won’t always be around to demand things for your child. What do you want them to learn about the world and living in it? Do you want them to feel that since they have a wheelchair, can’t stand loud noises, can’t read instructions or are blind or deaf, the world must bend to them? They won’t be successful if that is the route you want to go.

In my opinion, they won’t be independent because they will always rely on others to meet their needs.

Speaking with successful people, who happen to have a disability, what I found is they are just that. Successful people who happen to have a disability. Life and success wasn't given to them, they had to fight for it in a world that wasn't always accommodating. Most often they were the ones with the most grit and determination. 

Playing off society's pity is not how I want my child to go through life. I want them to be a happy, successful individual first, and a person with special needs second. For my children, I want their special needs to be part of them, not who they are. I want people to know them as the “sassy one with grit”, not the one that wears leg braces. I want my son to be identified as the one who is “always smiling and is determined”, not the one that has autism.

To be a parent who raises those children, I have to swallow the bitter pill that life is not fair and the world owes my child nothing. I have to teach them to ask, not demand and to approach unfair situations with honey not vinegar and a sledge hammer.

It’s not an ideal world, it never will be. But, my child has to learn how to live in it and that it is not fair.

It goes against your basic parental instincts to protect and fight for your child. But, think about what you are fighting for the long run. I chose my battles and teach my children to accept those that aren’t really fighting for.

My most often used phrase when confronted with something my child can’t do or a situation that won’t accommodate them is, “We will figure something out. We always do.” And then I ask them, “What do you want?”

Most often they may be disappointed for a moment. But these disappointments also breed flexibility and perseverance. It’s not going to be the first or last time they are hit with a roadblock.

It’s my job to teach them not focus on the unfairness and the bitterness of their life, but to develop the grit and perseverance to get past it.

For that, I will swallow all the bitter pills--in the end, our life will be sweet.