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Autism 101

How important are words? Parents of non-verbal kids learn that words convey everything. Non-verbal kids struggle with lettting parents know that they are hungry, thirtsy, in need of a bathroom break, or anything. Giving words to a non-verbal individual is giving them the world. Maureen was able to give Charlie a phone. The first thing he did was open text messaging and text his mom!

Now Charlie can express his needs, wants, and feelings! This opens a whole new world to Charile and everyone who knows him!

The most difficult thing about parenting a non-verbal child? Without question, Maureen says it's not understanding why Charlie is upset. When he's upset, he sits on the couch, grabs his knees and hums in a tone that can only be described as pained.

Why doesn't she embrace him and tell him it's going to be okay? She wants to, more than anything, but touching Charlie in this state will further upset him. Unfortunately, through experience, Maureen has learned this. Sometimes, sensory equipmet like the trampoline or a heavy blanket will help. Other times, Chalie prefers to ride the wave that flows through his body on his own as his mom is simply a spectator of the thing called autism.

Back to school is often a dreaded time in the life of the Puzzled Family. Charlie thrives on routine. He's barely had time to get use to his summer routine, and then school starts again. Not only is school starting again, but he has a new teacher, a new classroom, a new aide, and new classmates. But fortunately, one thing remains the same. His best friend, Violet, is in his class again and she's very excited to share another year with him!

Charlie's school has a peer-to-peer program where students help other students who tend to fall behind, mostly due to different abilities, like autism. Violet will be Charlie's peer throughout the school year. She will help him in the classroom and on the playground. They'll sit together in the cafeteria and at their desks. Charlie and Violet couldn't be happier with the arrangement. And Maureen? She's relieved and excited, which she has never associated with back to school in the past.

That Grandpa will do anything for Charlie. They have a special connection. Because Charlie has autism spectrum disorder he doesn't show affection as often as other children, but Grandpa knows Charlie adores him and he loves him right back. When Maureen was growing up, to see Grandpa, her own stepdad, jump off the raft would have been a miracle. But, it's funny how Charlie can make him do things Maureen always thought were impossible.

Grandma and Grandpa of Puzzled Family are great helpers. Not every special needs family have an accepting extended family, but this family does. This grandma and grandpa spend their summers at a lake in Northern Puzzled Universe. The kids love to visit (with Maureen and Norm or without)! There's swimming, fishing, campfires, and all that love from Grandma and Grandpa! Even "non-verbal" Charlie lets his preferences be known, and that preference is for Grandpa. He doesn't say much, or anything in complete words, but his utterances are enough to let his grandparents know they are loved.

It's time to broach the meltdown. What is a meltdown? How is it different than a temper tantrum? Tantrums have a purpose: to get what one wants. A meltdown, once it has started, can only run it's course. Maureen knows this and jumps in to prevent the meltdown episode from even beginning in the first place. When Charlie was younger, Maureen wasn't so quick to jump into preventing a meltdown. So, Charlie had more meltdowns. As he has gotten older and Maureen has learned what to do to prevent meltdowns, the whole situation isn't nearly as ugly.

Maureen's tips can be applied to most sensory seekers and food motivated ASD kids. First, attempt to prevent damage to items (like the iPad) or the child. Second, offer a desired food. This will help draw attention away from the meltdown inducing event. Third, give a big squeeze. This, in sensory seekers, will help "reset" the brain. Do not attempt a bear hug squeeze on children who do not like touch when they have meltdowns. Finally, a proprioceptive activity like bouncing on a trampoline helps to fully calm Charlie and some others like him. This routine works for Charlie and Maureen knows it. It may not work for every sensory seeker who is food motivated, and it takes a parent a lot of practice to get to an expert in meltdown prevention, but Maureen's got it down!

How did that playdate go? Charlie has a real friend. She accepts him for who he is, and he adores her. If that means Maureen gets a little teary-eyed, so be it.

Charlie and his friend, Audrey, met at school. Charlie's school has a peer-to-peer program, where some students are chosen to be role models for other children, especially the children with autism spectrum disorder. Real friendships come out of programs like this, and Charlie and Audrey are a perfect example friendship. Peer-to-peer programs end up being beneficial to both the child who needs assistance and the children who assist.

The joys of a parent of a real friend calling to play with their kid are enormous. This is especially relevent for the parents of an autism spectum child. Making friends does not come easy, especially when you can't talk. But Charlie has a true friend who really likes spending time with him, and Maureen couldn't be happier!

Sometimes, words don't need to be uttered. Charlie is non-verbal but he often lets Puzzled Family members know exactly what he wants without words. He wants to dance with his mom whenever she plays music. He feels the music to his core. Anna often joins in on the fun, and although rare, the whole family has been known to cut a rug. All because Charlie pulled at his mom's hand to get her to dance with him.

Eating with an ASD kid? Can you say "quirky"? Eating is, really, just a process. Charlie likes to break it down into logical steps. He wonders why all those NTs (that's neurotypicals for those who don't speak ASD) don't do the same thing. As "quirky" as we think Charlie may be, he thinks we're just as illogical.

IEP. The acronym brings with it the most dread many autism parents feel. An IEP is an Individualized Educational Program (or Plan) for special education students. A good majority of Autism Spectrum Disorder children fall into special education. The IEP meeting can be anything from a battle to a consensus, depending on the school district and the parent's demands. No matter the case, it always feels like getting ready for an IEP is torture. Unwinding can be neccessary, and usually reccomended by other IEP parents. Maureen puts on her battle face and takes no prisoners.

The r-word. Ugh! It almost hurts to type it. But, this situation happens for the Puzzled Family more than it should happen for anyone. There is a national campaign to End the r-word, and everyone should pay attention. The word has outlived it's lifespan. It's time to end the r-word. Like, yesterday.

Spread the Word to End the Word

The brothers are at it again, proving that autism is different for everyone. This time they're discussing their need for movement to keep focused on such important tasks as learning. Charlie needs to move his entire body, while Owen is satisfied just moving his fingers.

Sometimes, neurotypical children just need a little perspective. “Flappy is happy” works for everyone. Charlie flaps when he is excited, and gets even more excited when his peers flap with him. It’s like belonging to a special group. So go out there, and flap on!

What is the most important thing about autism? It never looks the same from person to person. Owen and Charlie are very different from each other, not just in their ability to speak, but in many other ways. Autism is so varied, it almost doesn't make sense to have the same diagnosis, but it is and they both have it, words or no words.

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© 2017 Allison Woodworth