I recently watched a video on Autism, and in that video moms are shown with their children, meltdowns are taking place, some kids are hitting their parents, you hear the babbling of nonverbal children (all trying to make their voice heard), kids that are too big to be carried clinging to mom, vying for her attention.
It’s real, and sometimes it’s the exact life I live. However, many of the moms in that video don’t realize their children can hear what they’re saying about them, nor do I feel they see the qualities their children possess. I don’t feel they’re trying to hear wheat their child is saying when they make a noise, hit them, or fall on the floor in a meltdown.
For this post I will focus on the first point. Our children hear what we say. Even when it looks impossible, like our child doesn’t understand the world around them, they CAN hear us.
I was surprised by what the mothers in the video were saying in front of their kids. At the same time, some of it sounded familiar because I’ve been there, saying very similar things. I still find myself making comments that I shouldn’t.
The moms in the video were saying:
This is so exhausting. (Referring to taking care of the child.)
She wants all of my attention.
He’s so difficult.
She’s like a baby.
He can’t be left alone for a minute.
My son, Jeremiah, is nonverbal and it took me a while (too long) to come to the realization that my son understood far more than what I thought he did. When I saw Jeremiah smiling in response to us talking about what he’d done, I started to recognize what he understood. Then he began to laugh at funny things he was doing, or funny things we said and it continued from there, me realizing what this kiddo understood, and how much I didn’t. Some of you are shaking your heads, saying, “Duh.”
When your child doesn’t obey simple (or so they seem to us) requests, it can lead you to believe they don’t understand anything you’re saying,
and that just isn’t true.
We also need to treat those with special needs with respect. Maybe you would say those things about a typically functioning child, but many wouldn’t. Stress makes us do things we normally wouldn’t.
It’s also really important to recognize that meltdowns are a child’s way of communicating, so are most other behaviors. And one woman, when describing her hand movements (stimming), said it was the song of her heart. She was communicating through her hands. When individuals are nonverbal everything is tucked inside, maybe it sounds obvious now, but I feel the fact is easily forgotten.
I also highly recommend everyone read the book, Out of My Mindby Sharon Draper. It gives us a glimpse into the life of someone who is nonverbal, but has much to say. It’s an easy and quick read, but so much can be gained from reading about Melody’s world.
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It was a simple blood draw. Oh wait, did I say simple? Nothing in life is simple when you have a child with Autism. Everything, and I mean everything looks different for our family. I thought that if there would be a place where people understood it would be the blue smocked folks in the hospital. Nope, I was wrong.
Blood draws are done on individuals with Autism Spectrum Disorder for numerous reasons. Jeremiah needed one (several vials) to check for vitamin deficiencies and for certain genetic components. It’s suggested by some medical professionals that a child with Autism have a blood draw while under anesthesia. Jeremiah FREAKS out when a bandaid is stuck on his skin or when a bracelet is placed on his wrist, so yeah, I think anesthesia was a good idea when considering a sharp, penetrating needle.
He wasn’t able to eat or drink anything prior to the procedure so we scheduled it for early morning. I thought we were going to have a screaming boy all the way to the hospital, and in the waiting room, surprisingly we didn’t.
In an Autism Speaks article one parent relayed their life as Groundhog Day (the movie). Yes, we live it too, and occasionally Jeremiah is able to go with a diversion in the plan. So, when we woke him up, put his coat on, didn’t feed him, and drove to town in the dark without his Sissy, I couldn’t believe we didn’t have a siren in the backseat.
We checked in and the receptionist informed us that he would begin in Pre-Op, and then be moved to the OR without us. What?? I wasn’t a fan and was considered leaving when she said, “Oh no, I guess he’ll stay up here the whole time and you can be in there.” BIG flood of relief.
BLOOD PRESSURE AND BANDAIDS
He did pretty well (only a little whining in the waiting room – benefit of a very early appointment is there wasn’t too much waiting to do) UNTIL…someone he didn’t know tried to get a blood pressure reading. Remember what I said about bandaids? He doesn’t understand what they’re for and he has Sensory Processing Disorder. This means that his body is extra sensitive and he processes stimuli differently.
Now something foreign was on his body and he fought to get it off. With four of us holding him, the nurse couldn’t get a reading. We explained that he has Autism, but it wasn’t enough of an explanation, as she seemed a little irritated. She had a look on her face that said BRAT.
NURSE SANDRA TRIES TO HELP
She left the room and a nurse (let’s name her Sandra) asked if Jeremiah would like a toy. Justin said no. (Justin wasn’t being unkind to Jeremiah, he just knows his son well. He knew that Jeremiah would have no interest in a toy, first, because we were beyond the toy phase. Second, he doesn’t like many toys period. He loves his doodle pad, swing, and an occasional sensory toy. Third, put something in front of him that he doesn’t want and he’ll be upset. He can’t tell us with words that he’s angry and doesn’t want a toy, so what are his options?)
Nurse Sandra asked if Jeremiah has a favorite color. I knew she was trying to help, and to keep from looking like neglectful parents, I went with her to pick out a toy.
Back in the room (Jeremiah ignored the squishy toy I found), Sandra asked if he would let her put the name band on his ankle. You know those beautiful bracelets everyone who is a patient at a hospital receives, just in case they forget who they are? Yeah, no. Did she forget what it was like getting his blood pressure? Not happening.
Next was the cute smock covered in Tiggers. Yes, bouncy, can-do Tiggers. However, this boy was not thinking bouncy, positive, happy thoughts. He had no idea where he was, what was being done to him, or why. Thankfully Nurse Sandra was understanding and let him do the procedure in his pull-up.
Nurse Sandra now needed a heart rate, after three of us tried to hold his little finger still, she did get a quick two-second reading, but it was anything but a normal, resting heart rate. Jeremiah was MAD, and I don’t blame him.
WE ALL KNOW, NOTHING NEEDS TO BE SAID
Justin held Jeremiah and he clung to him, I reached out and Jeremiah turned away. This isn’t a rare occurrence, Jeremiah is more attached to Justin than to me, it’s always been this way. (Something to do with Autism and their attachments to people or things.) I wanted my son to cling to me, I wanted to be the one to console him in the hospital where he was so confused and scared.
As Nurse Sandra watched this, she said, “He sure likes his dad.” Yep! Not sure why people need to label this fact. It couldn’t make me feel any schmuckier. It’s obvious that he loves his Dad. Does this mean he doesn’t love me? Well, he doesn’t talk, so he’s never said, “I love you,” but in my heart I have to believe he does or that heart would break in two.
Then the Anesthesiologist entered the room, talk about stoic! We went through the list of 101 Questions again, repeating that, no he hadn’t had anything to eat or drink. Then he said, “I can do a blood draw without anesthesia.” See, he had missed the part where four of us couldn’t hold Jeremiah still enough to get his blood pressure or heart rate. I’m thinking, “Nurse Sandra, would you like to share what’s been going on in here?” I’m surprised the entire floor didn’t hear the screaming.
What I actually said was, “Jeremiah has Autism, and it’s recommended by his doctor that a blood draw be done under anesthesia.” He nodded.
HEY KID, WATCH THIS VIDEO GAME AND ALL YOUR TROUBLES WILL DISAPPEAR
He asked if Jeremiah likes any video games or APPS. We said no, but he handed me his phone, and while Justin held Jeremiah, Dr. Anesthesiologist held Jeremiah’s head from behind with the mask over his nose and mouth, I was supposed to play Angry Birds while the little guy watched. Jeremiah was an Angry Bird! Thankfully it didn’t take him too long to dive deep into sleepy depths. He didn’t fight it, or cry, either because those two were holding him so tight he couldn’t budge or because he was terrified. I go with number two.
I was thanking God that we’d decided to put him under for the blood draw because it took Nurse Sandra several attempts to find a vein to draw from. Several sticks, several vials. Oh, it would’ve been torturous if he was awake.
ONE HAPPY MAMA
He woke up and I was one happy Mama! Nurse Sandra tried to get another heart reading, with three of them trying to no avail. Dr. Anesthesiologist waved his phone with the Angry Birds in front of Jeremiah’s face while Jeremiah screamed. I can only imagine what he would’ve said if he could talk!
SHARE AUTISM WITH THE WORLD
I left the hospital realizing that many medical professionals don’t know about nonverbal Autism. What can we do? Bring awareness to the world. Talk to others about what it’s like. On LinkedIN, Sharon Fialco talked about the difference between bringing awareness of Autism to the world verses acceptance. She’s right, we don’t only need the world to be aware of Autism, but it needs to accept Autism. However, I think awareness would come first. So, share your stories, the good and the bad. Our different is awesome and unique, but if we stay quiet, or pretend that nothing’s different about our children, how will others know how to respond?
*There are many wonderful nurses and doctors who have an understanding of Autism, it just didn’t happen to be our day to run into them. I give Nurse Sandra and Dr. Anesthesiologist kudos for making efforts to help Jeremiah.
Is your child high or low functioning? If you have a child with Autism Spectrum Disorder, it’s probable you’ve been asked this question. How did you answer? Do you have a planned response if someone asks you this?
The Autism Spectrum is large, it encompasses a vast array of abilities, and now that Aspergers is included on the spectrum, it makes the range even greater. So this makes it difficult to answer the question of whether our children are high or low functioning.
I don’t know about any of you, but when we got our sons diagnosis we weren’t given a place on the spectrum. We didn’t get a pretty little star placed on a graph that explained our son. No, in my experience, our son is anything BUT explainable. Thankfully we are able to (sometimes) recognize that this is what makes our son unique. There is a way to figure out patterns, wants, needs, and communication styles of our children, but it isn’t without intense awareness and investigation into his daily, or more appropriately, hourly routines.
There are children on the spectrum who have arms and hands that curl into their bodies, there are children who don’t talk and children who do, children with comorbities such as Angelman’s Syndrome or Fragile X Sydrome, children whose sensory needs overwhelm them, children who understand more than others.
Jeremiah is nonverbal and gets extremely frustrated when he can’t communicate his desires. His sensory needs can overwhelm him and make him act hyper and out of control, or he can manage them well. He has no fear of cars in the street or of anything else really. Does this mean he’s low functioning? But there are children on the spectrum who don’t function as well as he does.
Jeremiah has good fine motor skills and can follow routines and directions if they’ve been in place daily for more than a year. Does this mean he’s high functioning?
Maybe people ask if a child on the spectrum is high or low functioning because it’s the only conversation piece they can think of when it comes to Autism. When I’ve told people (friends included) that my son has Autism, they look at me and kind of nod, like I just told them Safeway grocery sells bread. So, maybe the question of high verses low is better than nothing.
Maybe people ask where a child is on the spectrum because they are trying to make connections to what they know. That would be Rain Man versus Einstein right?
I wonder what outcome the questioner is looking for. If my child is low functioning, does the person feel bad? (Some Autism parents don’t want sympathy, but really, what else is someone supposed to feel for us? Apathy, joy?) On the other hand, what if I told them my son is high functioning? (He’s not, but let’s say he is for now.) Do they then feel like it’s no big deal? Like those who have a high functioning child on the spectrum have it easy, that it’s similar to having a neurotypical child?
A child on the spectrum is a child on the spectrum, and no matter where they fall on the graph, it presents many challenges for them and their parents. My heart goes out to parents of children who struggle more than my son. There are times when I can view Jeremiah’s disABILITY differently because he’s not in a wheel chair, he smiles at me, and makes eye contact. But the off days can weigh heavily on me, just as it can on any parent who has a child anywhere on the spectrum. So, in my opinion I’m not sure this question of high or low matters so much. I think excitement in the progress and sympathy in the struggle is warranted.
Have you been asked if your child is low or high functioning? How did you feel about the question? What do you feel are questions people can ask or comments people can make that would support you and your child?
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