There is a constant neediness of special needs parents. They are always asking for more money for schooling, a cure, healthcare, and on and on. It is almost as if they believe they are owed something. They continually complain about parking spaces, their “rights,” and all the stinking terminology! It’s truly maddening! Somehow, they have made themselves believe that those with normal kids are to blame for all of their problems. I don’t understand why they can’t just build schools and neighborhoods where they can all go be big ‘ol whiners together!
You are right. We do complain. We do advocate non stop. We never stop talking about those rights or the need to improve them. Want to know why? We do it because we love our children. We watch them cry because they can’t ride a ride at an amusement park because it isn’t accessible. The pain becomes etched into their being. The message that their desire to have fun isn’t worthy of the cost to make it so they could join in too is received loud and clear. Those tears become a potion that calls special needs parents to action. They start to think and quickly, a skill that becomes more honed than an Olympian on the center podium. So, they put their eighty pound child on their back and take every step necessary to make things as right as they can for them. With every step, they keep their mask firmly in place as they inwardly cry. They push past their physical limits while tamping in their emotional ones. We focus not on how doing this day in and day out takes its toll, but on normalizing our child’s life. In short, we strive to make our kids just like everyone else in a world that digs its heels in to not have to do the same. We speak loudly and often because we have next to no visibility and our rights are continually subjected to ridicule and questioning over their very necessity.
We are not sorry.
This is not an us versus them. We are continually trying to create only an “us.” We are all on the same team, but it’s as if we are scrimmaging day in and day out. We want you to know we hear you. We understand that we are taking away funds from the football team to purchase a communication device. Unfortunately, we just really believe our child should be given the opportunity to be heard more than the football team needs to paint the concession stand. We recognize that a continual heartfelt plea to help fund medical research gets tiresome. Trust us, we get it. We don’t like asking for money, much less money in hopes that our child won’t die. It’s emotionally exhausting. Although, love and fear are excellent motivators to overcome that.
Overcoming is what we do best. We overcome obstacles like changing our larger incontinent children in restrooms not equipped to do so. We move mountains to create safe places where our children can learn with their peers. With unflappable determination we strive day in and day out to make our children’s lives better. What you need to understand is that our “better” may not even be the quality that “typical” children are fortunate enough to experience. We don’t blame you for seeing things through your privilege. We envy it. We wish with every cell in our body that our children could be just like yours. We want the same things for our kids: Happiness, acceptance, friendships, and a future full of possibilities. Yet, our playing field just isn’t level. It truly is an uphill climb both ways.
Leveling the playing field does not mean sending our children to schools segregated from the neurotypical or able-bodied population. What we are asking for isn’t special treatment or to take away things from your children. We are asking for what we need to take down barriers literally and physically to our children being able to reach their goals. Like every parent, we are looking for them to surpass our goals for them. We are not trying to be disagreeable, unpleasant, or provoking. We, special needs parents, are asking for the laws in place to be executed without us having to be any of those things. It takes more energy than we have in reserve to continually remind people that we aren’t asking for special favors but for our rights to be respected. Those in wheelchairs don’t climb the ladder of success, they take the elevator! So, let’s make sure one is available!