This post is written by a dear friend, Gena. She is a single mom doing the very best she can for her son. This post was written as a “vent” to explain the pressure and anxiety that comes with raising a child with Autism.
“They call them rude awakenings for a damn good reason. They come without invitation or warning. They arrive when you’re comfortable. When you feel like everything is just ok enough, calm and quiet. You’re in a good routine in life and then the metaphorical foghorn goes off.
And it sucks so hard!
Reality hits you like a shot in the back; you’re in a room of teachers, administrators and specialists, all telling you that your son is failing to meet the expectations of his grade. He’s not performing at the level of his peers. In fact, he’s actually functioning a couple levels lower than expected. The reality is that he will just improve from the level he is at. They’ve set the bar far lower for him. They’re accommodating him. You see words on paper that are a nasty, ugly reality. He will never be expected to catch up.
Well, that’s just awful right? And no one feels the awfulness quite the way you do as a mother.
Then you are forced to deal with it the best way you know how, under an intense amount of pressure; pressure that is self-induced or not. The success and well being of your child is at stake here. Don’t F**k it up!!
Maybe you can’t relate to the picture I’m trying to paint here. Maybe your kid is an awesome student and functions fine in the academic environment. They come home excited about how they aced a test or learned about climate changes. Maybe you can’t get them to shut up about anything. They want to share everything and anything with you. Maybe they don’t have learning challenges. They read well, know how to answer ‘why’ questions, and can tell you that one plus two is the same as two plus one. Maybe you have that kid.
I am raising a son with ASD, or Autism Spectrum Disorder. He is not in the 3rd grade. He just sits in a 3rd grade class. He is tested against the expectations of other 3rd graders; he is not on their level. My son’s goals for next year are on a level well below the standard in every subject, which will be a great improvement for him. He’s expected to fall short.
How’s that for keeping it 100?
I don’t expect people to relate to my challenges as a parent. People won’t get it. Even if they do research about ASD, they won’t find much. Watching a movie or TV show, or reading about a very high functioning person with ASD is misleading. It really can’t be conveyed, life for a person on the spectrum, or to love a person on the spectrum is different for everyone. It’s very much a tailor-made thing. It’s a suit that fits you, and only you. It’s a fingerprint. It’s a snowflake. Get my point?
My son will continue to face challenges, like any other child. My reality is that he will fall short. He has an Individual Education Plan (IEP) because falling short is expected, whether I like it or not. And I hate it! That’s my truth about it. My son is at a disadvantage, through no fault of his own. He’s doing the best he can. And it’s not my fault either. I refuse to let guilt take the wheel here.
My own personal challenge with my son’s schooling is shifting and changing. Adaptation is constant. This isn’t the first time I’ve heard that metaphorical foghorn and it won’t be the last. They will raise the bar on him with each grade he ‘progresses’ to, bridging the gap between his challenges and where he should be will become harder and harder in the years to come.
But it’s not impossible.
I have a duty to my son to advocate for his best interests inside the classroom and out. I have a duty to set the bar higher for him, even if I know he will fall short. I have an obligation to make sure the right tools are in place to help him succeed, not only in class, but in life. I have an obligation to take advantage of every opportunity that will help my son become a functioning person. I want him to start with earning a high school diploma. I am not unlike any other parent.
But I’m not like other parents. I’m am snowflake on a mission. The mission is to see my son with Autism in a cap and gown. It will be no small accomplishment for my son, or for me.
My point is to not lose site of the big picture in all the little details, and no matter how hard the goal is to reach, shoot for it anyway. My son may not reach this goal, but it won’t be because I did nothing to help him.
When that damn foghorn goes off, use it as an opportunity for growth. Use it to adapt. Anticipate it. Welcome it. Learn to love it.