This week I asked several moms to help me write. Why? To help all readers understand the true spectrum of Autism Spectrum Disorders – not only between children, but between children in the same family. Every day this week you will get to meet a new child (or children)…they are very different from Tucker, and yet, so much the same.
Keep reading – on Saturday I will post a ‘wrap-up’ with some final thoughts about the spectrum itself.
Today? Meet Brandon…
My son Brandon is 13. He was diagnosed with autism at age two. Brandon started experiencing regression around 22 months. Our local AEA came into our home four days a week, we enrolled him in preschool, you name it – we did it in hope that our boy would come back. But he never did. Brandon’s words never returned and his personality was never the same.
He is mostly non-verbal, but does use some words to communicate. He does a lot of “scripting” which is memorizing parts of movies, commercial, and songs. He repeats those 3-5 words over and over. You may hear, “Stop SpongeBob” 10 times in one day and then not again for a year. My current favorite is when he sings, “You don’t have to be lonely, at famers only .com”
I hope someday my bundle of joy will be able to express himself though some sort of communication device. I would love to hear his stories. He is quite a comedian – he makes our family laugh all day every day. He brings so much joy!
Like most people on the spectrum, Brandon’s sensory system is always on overload. He has spent an immense amount of time in occupational therapy. Even with all of this time, he has not completely overcome the difficulties. The sensory issues really interfere with his everyday life. He has a hard time using his hands because of textures. This presents issues with dressing, brushing his teeth, combing his hair, bathing, using utensils, putting on his coat and shoes – so I do most of those things for him.
Brandon’s school life is really limited because of the difficulties with his hands. He does not write because of weakness in his hands and these sensory issues. He is capable of so much but with the communication barrier he is unable to really succeed in academics
These tactile issues also include clothing and eating. When he is at home he is in his underwear only or his underwear and pants. Never a shirt. NEVER. He mostly eats dry and crunchy things (he LOVES french fries). Brandon is able feed himself with these crunchy finger foods.
On some days certain noises really both him and he spends his day with his ears covered.
I am usually able to calm his sensory issues through deep tissue massage. He is so smart and is beginning to understand how to get his own sensory input. Brandon has a tube of goop that he likes to mess with, he will sit for 20 -30 minutes just playing with the goop.
Every day is something new and random.
Except there is no randomness when it comes to his schedule: school, pick up, come home. Every once in a while we can throw a grocery stop in the schedule, but if it’s anything else he melts. This means he gets very agitated, has a sad cry, and repeats ‘Go home?’ over and over until we are on our way.
He has low muscle tone which is another spectrum indicator. This muscle weakness has prevented him from throwing a ball overhand, jumping like he used to jump on a trampoline, running, and riding a normal bike. Because of this he has frequent falls and needs constant supervision.
Adding to this difficulty is Brandon’s insanely high pain tolerance. His non-verbal communication makes it really hard to know what specific area he is having pain. His body language is easy to read, so I know he is in pain but I am in the dark on where and how bad it hurts. He does say “doctor” if the pain is intense.
He also struggles to sleep and this causes him to miss school- which doesn’t help his difficulty in academics. For instance, last week he was up until 4 AM on both Tuesday and Wednesday. It’s nearly impossible to get him to school when he has only had three hours of sleep.
Like many children on the spectrum his ‘ASD’ diagnosis is joined by several other diagnoses. We don’t only cope with autism…we cope with food allergies, selective IgA and IgM deficiency, a possible connective tissue disorder, an unexplained interferon on chromosome 13 arm 22, and OCD.
Brandon enjoys being at home, his movies, his iPad, swimming, swinging, and riding his adaptive bike at school. He is now involved with pool therapy to help strengthen his muscles and it’s going well. Our outings are limited. If he’s in the mood, he’s up for anything – if he is not, we stay home.
If I were to write everything I know and love about Brandon I would have to write a novel. Our life with Brandon has been a journey. Trust me, I have been mourning his change since the day it began. There are months where I wouldn’t think of changing him and then I become angry. My mind becomes occupied with all the reasons that this may have happened. But no one knows why and truly, the unknown can be such a downer.
When you give birth to your children you have dreams and visions of what they will become and do in life. I am often forced to compare these dreams and visions with reality, a sort of self-pity (which I think we all deserve from time to time) Brandon will not graduate like his brothers, he won’t drive a car, have a girlfriend (he dislikes people in his space), go to prom, get married, have a great job, go to college, or ever be a daddy.
Regardless, I LOVE that boy so much it hurts. I’m glad I am his momma. Even after all of the downer’s and self-pity, NOTHING needs to change. I will continue to STAND BY HIS SIDE. I can’t even begin to explain how he has changed my view on life.
I just hope he goes to sleep at a decent time so he can attend school tomorrow.