“Mom, why do kids at school hate me?”
I’m sitting on the floor in the living room with the baby and my two school-aged kids who just came home from school. The heartbreaking question startled me on that rainy Tuesday afternoon and I immediately stopped folding the warm towels I just pulled from the dryer to embrace my son.
I looked into his eyes,”Why would anyone hate you, buddy? What’s going on?”
“I don’t know mom. I like them. They just say they hate me. They say I’m dumb.”
Max was diagnosed with PDD-NOS at age 4, which falls under the umbrella of autism, and he also has ADHD and anxiety.
My several-years-long fear has turned into a real life daily sadness since my son began Kindergarten in August of 2016. His trouble with social skills and relating to others, lagging skills that were once chalked up to immaturity and ones he’d “surely grow out of,” he…well… hasn’t.
Now a seven year old, some of his peers are old enough to recognize these differences. As a result, his Kindergarten year and the start to his first grade year have been full of angst, anxiousness, and poor behavior. I’ve received a LOT of phone calls to come get him from school, even though his diagnoses are well documented.
As a result, my son is no longer in the General Education classroom. The way he’s affected by autism, in combination with his ADHD and anxiety, resulted in a removal from the classroom and instead he is in a class for students with behavioral issues. In multiple meetings, this was deemed to be the best fit for him. As a result, we are seeing an INCREASE in verbal and physical aggression. (I’ll write more about the classroom setting another time).
This last year and a half (since Max started Kindergarten) has brought many tears, questions, sadness, confusion, and visits to doctors. It’s been a time of continuous mourning. When your child struggles, you as the parent struggle too. I’m a fixer. I want to make things right for everyone — especially my children. Clearly I can’t “fix” my son’s autism, so this has been a big personal struggle for me, even though I sometimes try to hide it. There’s a lot of guilt surrounding the issues Max deals with. Is it something I did or didn’t do? With the causes of autism still a large debate (The rule applies: never discuss religion, politics, or whether or not immunizations can “cause” autism!), I have lost hours and hours of sleep trying to figure out how to help him and blaming myself over his struggles. I’m sure many parents of children with special needs of all types are with me on this.
While the awareness of autism is growing constantly and the resources in the Indianapolis area where we live are plentiful, there is still a lot of stigma surrounding it. Parents and schools seem to care more about inclusion; for that I am thankful. But when you look at Max and there are no obvious physical markers, many people don’t seem to understand that his struggles extend far beyond intentional misbehavior. If he had a feeding tube or was deaf or blind, he’d be treated differently.
Do I want sympathy? No, not at all. Pity is not what I’m after – he’s my boy and I love him for who he is, just like any parent loves their child just as they were created. What I do want is for people to slow down and not be so quick to make assumptions about my child or my parenting. In Max’s case, people often tend to just think that he is “bad” or that my husband and I “aren’t tough enough on him.” People have SAID and insinuated that if we simply parented differently, he wouldn’t act like that. Ohhhh if only it was that simple. Trust me, neither of those things are true and I take them both very personally.
I realize people don’t know what to say when you share the diagnosis and I would never expect anyone to have the right words.
Max doesn’t have many of the stereotypical signs of autism (every child is different, but people tend to associate non-verbal actions or what they’ve seen in movies with all cases of autism). His diagnosis is PDD-NOS, which is actually a diagnosis that no longer exists; a child who went through the testing today would instead be considered “on the spectrum.” He’s verbal, with some speech delays largely relating to holding a conversation. He makes eye contact BUT he can totally tune you out if he wants. He can read and write and count and fill in the blank numbers from 1-100. He’s not like Dustin Hoffman’s character in Rain Man, but he can pass standardized tests.
He can ride a bike without training wheels and has been able to since he was five. He’s pretty concrete when he speaks mostly stating the facts, yet he has been in to making us laugh lately by making funny faces. He is as ritualistic as they come. He NEEDS to know what is happening next and his schedule is really important to him.
He’s often heard commenting about specific days (like if it rains on a Wednesday, he’ll say, “It rains on Wednesdays”). The rituals and attempts to predict what is coming give him a sense a comfort in the hustle and bustle of life. He needs that constant. He also is very fixated on things, such as fire drills and tornado drills – the anticipation and the sound of the alarm are just too much for his brain. If his class at school is told they’ll have a drill that day, the impeding drill is all he can concentrate on for hours, then once it’s over he is fine.
So why am I happy my son was diagnosed with autism?
I’m happy because I know what is going on in that amazing little mind of his so I can best help him. I’m happy to not feel like his behaviors and quirks are a result of poor parenting. I’m happy because know I can put my heart and soul into being his advocate in the public schools (and in other situations) so that I can make sure the supports are in place to help this kid soar! He needs me!
While the words, “My son is affected by autism,” are still hard to say, and hearing, “Max has autism,” nearly knocks the wind out of me each and every time I hear them, I’m glad we have a diagnosis. As much as I dislike labels, I know early intervention is the key to long term success.
There is one thing I must point out, however.
Autism doesn’t define my son.
Autism isn’t Max.
Max isn’t autism.
Max is a bright boy. One who loves with all his heart. One with a sweet smile strangers comment on and a laugh that makes my heart sing. A boy who loves his little brother and sister. A boy who loves baseball. A boy who immerses himself in play, into his reality world. Who else could come up with the idea to play “Dunk Tank” in the bathtub? He’s one of the most creative individuals I’ve ever known. He wants so badly to fit in. He’s simply a boy who is affected by autism. He looks at the world in a different way that you or I do – and that’s ok. The world would be a pretty boring place if we were all the same. And just like people who aren’t the spectrum, he is so wonderfully and beautifully made. And he’s mine.
I look at him, trying to blink back the tears from my eyes about other kids lack of acceptance. I take him into my arms to embrace him. I tell him that he is loved. He looks back at me, long eyelashes fluttering,”I love you too mom. You fold laundry on Tuesdays.”
If you need any information about autism and its signs, have received a recent diagnosis, want to find tips for being an advocate for your child, or would like to get involved, visit AutismSpeaks.org.
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