We interrupt our normal podcast schedule to bring you an interview with a very special guest on a very special weekend. Tay interviews his Dad, a veteran United States Marine right before Veteran’s Day.
NOTE: Anytime you hear someone making noises in the background, it’s Tay’s big brother. That’s our house for you! 🙂
When someone walks in your kitchen and says ” Hey, I’m hungry”, that’s communication. When someone walks in your kitchen, grabs the cereal box off the counter and hands it to you, that’s also communication, correct? Most would agree with me, but when it comes to raising and helping those in our community who are non verbal, it often gets forgotten that behavior is communication. This valuable lesson was engrained in my brain after one particular Autism related conference that I attended several years ago, and it might have saved my son’s life. Let me explain.
The Nisonger Center is a part of The Ohio State University that is dedicated to research and services for those with developmental disabilities. They often hold educational seminars and conferences that can be attended by parents like myself. One such conference was about the medical care of those on the ASD and the challenges that it can present. One particular speech was given by Dr. Christopher Hanks, one of the physicians of CAST, Center for Autism Services and Transition, here in central Ohio.
During his speech he explained how there were only a handful of centers like it in the nation and that they were pioneering the way medical services were given to young adults who were transitioning out of pediatric care . He was explaining how complex medical care can get for those on the spectrum, especially those who are nonverbal or limited verbally. He went on to give a few examples that changed the way I look at my own non verbal son, forever.
One example was of a young woman who had come to the clinic with a behavior of pounding her chest with her fist. She had been exhibiting this behavior for some time, but, after a thorough medical examination, they found that she had been suffering from GERD for years. They treated her for it, and her chest pounding behavior went away. She was trying to tell someone she was in pain for years, and it wasn’t until she made it to medical doctors who listened to her non verbal communication that she was finally heard.
Another story he told that I can recall was of another young adult who started exhibiting the behavior of stomping his foot. To most people, it just looked like he was being defiant. Again, after being examined by their doctors, they found this young man was suffering from a broken bone in the same leg. Not everyone on the Autism Spectrum reacts to pain in the same way. Their neurological systems can cause their sensory experience to be vastly different from those who are not on the spectrum. For instance; hunger can go unrecognized , or bad pain can be experienced as a tickle. (Go HERE to learn more.) Up until this point, I knew that my son getting overly hyper meant he had tummy issues, but I realized that I needed to pay closer attention to his behaviors because I could still be missing a lot.
Fast forward a few years after the conference. My son has never slept through the night all the way and now he’s exhibiting hyper, loud, yelling spurts at school that are followed by low points where he has no desire to do anything all and seems sleepy. I take him to a GI specialist to help his tummy issues, but still, there are lingering concerns. Even after treating his GI issues, the hyper behavior is still present and he is still is not sleeping through the night. He starts taking other people’s hands to smack them against his head, almost daily. We treat it like a headache and give him the appropriate over the counter pain relievers.
One day , while I was walking him out of school, he stopped in mid-stride while staring at the ground. His left hand was in mine, while his right was stuck in mid-air. He did not respond when I said his name. I watched every inch of him as I said his name a second time. His right hand tremored, and I said his name a third time before he finally looked up. He seemed lethargic and sleepy after this and his pupils were dilated.
After compiling all of his latest documented behaviors from school and home, I went to his pediatrician to tell them what I had just saw outside of the school. They sent him to a neurologist who then ordered a two-day, two night EEG. Sure enough, he had seizure activity that happened mainly at night, which explained his years of disrupted sleep. A majority of the activity happens in the left hemisphere of his brain, which explains the tremor I saw in his right hand, because the each side of the brain controls the opposite side of the body. He was definitely having headaches too which explains him taking our hands and hitting his head. We are now pretty sure his hyper behavior that’s immediately followed by exhaustion is his reaction to a daytime seizure too. He’s been experiencing all of this for a long time, but could not tell us verbally.
Absence seizures are usually diagnosed by the patient having staring spells, but how do you catch that in someone on the spectrum who stares a lot anyway? By paying attention to the other nonverbal behaviors. My son is now on a medication that helps stop the seizure activity from happening and it helps lessen his chances of having a Grand Mal seizure in the future. It’s not an absolute guarantee, but he’s way better off than he was before the diagnosis and his behavior now reflects that.
It’s interesting to see what all information you can get from someone’s nonverbal communication once you’ve delved into the possibilities with someone nonverbal. I’ve found that my son gets upset if you talk to him about his inability to speak words. He’s well aware of his disposition in this super verbal world, which I can only imagine is beyond frustrating on a daily basis. Along side looking for hints to medical issues, I’ve learned other behaviors that have meaning too. For instance; he walks up to me and stares me in the eyes right before he wants to snuggle with me, and he still gets loud and yells if his tummy issues are acting up. It’s easy to miss or miss understand when you are not attuned to it.
Harvard University offers courses to their law students that teach the art of reading and understanding non verbal communication during negotiations. Why? Because it’s an inconspicuous, though salient, part of how we communicate with one another. It’s easy to dismiss behavior coming from someone non verbal as defiance or unexplainable self harm, but we need to look closer and figure out what they are actually trying to say with the behavior. It’s all communication, and everyone deserves to be heard.
In our second podcast, Tay talks about his older brother, Anthony, who is non verbal. He discusses what it’s like being a little bro to him and what his brother is actually like once you know him. Have a listen and see if any of you siblings can relate!
Introducing the very first ever podcast hosted by The Spectrum Perspective, Tay Time!
Taylor is my 8 year old son who is; intelligent, creative, moody, thoughtful, and happens to have both Autism and ADHD. He’s a little brother to Anthony who is nonverbal and on the spectrum too. This is an intro to our new weekly podcast about what it’s like to live life as Tay. He hopes to spread acceptance through his stories, and make a few friends along the way! FOLLOW us on FB to keep up with the podcast as it airs every Tuesday!
One morning a few days ago , like most mornings, my husband got up and made my coffee a few minutes before I decided to roll out of bed. He started getting breakfast ready so I got up and I woke up my youngest, Taylor, who was on the floor in front of the couch. I put him to bed in his bed the night before, but he always winds up out in the living room with his older brother who hates sleeping in his bed. He seemed way more cranky than his usual, but I brushed it aside.
During breakfast I realize that Taylor was sadly staring into oblivion over his cereal with his head in his hands. I asked him what was wrong, expecting a generic “I don’t want to go to school.”. Instead, he explained how tiring it is to be in school all day. How he doesn’t feel like the other kids, he feels different. He says , “I don’t want to go to school ALLL DAY. It’s so exhausting.”
I had attention and anxiety issues back then too, only it was considered a detriment to your kids to admit they weren’t just “being a kid”. I didn’t find out until I was drinking age that I legitimately had an attention issue. My son was fortunate enough to come through me in a more accepting time so I got him tested and diagnosed at the earliest of signs this past year.
About a week prior to this breakfast, I picked him up from school and asked him if he wanted to go get ice cream. He replied ” I just want to go home, Mom. I’m exhausted.”
When I look back on it, those school days seemed ridiculously long to me too.
I wasn’t able to pay attention, and because of that, I would day dream. I would spend hours in my own world, lost somewhere beyond the fence in the back of the school property that I could see from the classroom window.Â
I would see how long I could go without looking at the clock, which moved so unbelievably slow and it always seemed to be as big as the wall so you couldn’t miss it.
I didn’t learn early how to properly manage my issues with the anxiety that came with my attention problems, so school was hell for me most of the time. I faked sick constantly in attempt to stay home.
I hear and see everything that’s going on around me, which makes is super difficult to concentrate in a classroom setting or anywhere that’s full of other people. Taylor is the same way.
He gets nothing but praise from his teachers for being a good student and for being a great helper. No one can see just how much he struggles to keep it all up every day because he hides it so well. Until he has to do a task that seems daunting to him, then he struggles to finish work in class and needs time out in the hallway away from the distractions to finish.
Taylor is also on the Autism spectrum so he hand flaps or stiffens up when he’s excited about things when he’s home or out with us. At school, he hides it, and all that energy that is not redirected aids in that drained feeling he has at the end of the day. I’ve often wondered if I’m on the spectrum too since I did and still do similar things to hand flapping. It’s all so exhausting when you are made to suppress yourself all day, because once again, I felt I had to in school as well and I know how it feels.
He can’t deal with major changes in routine either, and he go into full blown melt down mode sometimes, even at school.
So when I see him with his head in his hands at the table staring down at his cereal saying he doesn’t want to go to school, I believe him. I know it’s not because he dislikes school, he loves his friends and his teacher, and he genuinely loves learning. It’s not that at all. People who have not been in our shoes have a hard time understanding what it’s like to function like we do in a typical day and generally just label us as lazy, which is not even remotely the case. Taylor is used to being a big brother figure to his older brother who is non-verbal, so I think it’s hard for him to admit that he struggles too.
For me, it’s hard to watch my kid struggle through the same issues that I did. I can’t help but feel a tinge of guilt about it.
I tell him it’ll be OK, and that he can ask for a break if he needs it. I made a note to myself in my phone to call the school and ask for a meeting to discuss further accommodations for him. In the beginning of the school year the teacher and I Â had discussed waiting to see how he did with being in school all day in first grade before we went ahead with a 504. It was now time to discuss moving ahead. (A 504 is a formal plan made for accommodating a special need or needs.)
His Dad took him to school that day and my heart was left hopeful but sinking for him, all at the same time. He’s got me, his biggest advocate, and I will make sure the changes are made that he needs in order to be successful in school, but he still has to go do it all over again until I can get the changes that will help to take place in few weeks. It sucks ass that as a parent I can’t wave a magic wand and make everything better right this second for him.
All of the energy was sucked out of the room when they left that morning. I sat staring at my coffee, at it’s stillness, and realize that I’m thankful that I’m not a kid in elementary school anymore. That I’m an adult now who understands and can help Taylor through this.
A few quiet moments passed, I made the phone call to the school, scheduling one more appointment for the books, and I ate a little more breakfast. I had things to do but I knew I’d have a hard time focusing on any of it, knowing that Taylor is struggling.
My thoughts went like this;
I wonder what my son is doing in school right this minute? I wonder if he remembers what I told him before he left for school this morning? I hope so. That he can ask for a break out in the hallway if he feels overwhelmed, and not to be afraid to ask. I told him not to suffer in silence, like I did. I hope he’s learned the clock game, because I remember seeing a clock in his classroom. I also hope he remembers that he’s got an ally on the other side of that fence, the one way out in the back of the school property.
The Spectrum Perspective 