EDITOR’S NOTE: in order to do justice to the mission of raising awareness and acceptance for people with autism, we must take a hard look at all points of the spectrum, and we must do so without judgement of choices or parent criticism. Anyone who is brave enough to share the darkest days, in order to bring about change, deserves respect, attention and our action Stories like my friend Darlene’s deserve to be heard. Thank you for this guest post, Darlene
I’m standing in the middle of the kitchen, egg yolk dripping from the computer screen, a chair overturned, puddles of water and coffee on the floor. I can still hear the screaming from upstairs. But the storm has passed and I start to cleanup.
I have trouble putting these thoughts on paper for so many reasons. These outbursts don’t define who Ben is or how our family works. My reaction is to cleanup and quickly move on- writing it down would preserve it too long and then it becomes part of our family narrative. But today weighs heavy. It’s only 9:30 on Good Friday and I feel like we’ve lived a day and a half already.
I made egg sandwiches- bread, melted cheese, bacon, fried eggs. I gave Ben his sandwich first, then assembled Lila’s, our 12 year old daughter. Most of the time, it all goes fine. Ben uses his iPad to communicate thru a voice output app. At almost-18 years old, he can’t talk. I realize this may sound strange to people but 1/3 of all people with autism remain nonverbal their whole lives. Ben uses his iPad to ask for pizza. No its breakfast, I’m making eggs. He nods yes. He can say “Ba”, sometimes “Na” or “Ga”. “Ba” gets louder and louder and I explain over and over that it has to cook. He needs to wait. This will continue for every meal for the duration of the cooking, every day. I direct him to the family room to watch TV or look thru a book (a picture book because Ben can’t read). He leafs thru the picture book about the ocean, fish and dolphins, his favorites since elementary school.
As I put his breakfast on the table, I don’t notice how fast he is shoveling it in his mouth until he gags, then swallows hard. I notice his eyes- wild and his hands and body are rigid and tense. He is spiraling unable to control this impulsive brain as he screams and bolts across the table to grab his sister’s breakfast. She and I respond together yelling “NO!”. He is reaching and grabbing and screaming and at 6’1” , 240 lbs, we need to get out of his way. I salvage 1/2 the sandwich and help Lila out to the back porch keeping my body between Ben and Lila’s food. He is relentless but we are quick, I close the slider door and she is safe.
I send Ben to his room not knowing if he understands the punishment, he is angry, screaming but finally walks upstairs to his room. Later, he strokes my arm, his version of “I’m sorry”.
This impulsive behavior around food, even when he has just eaten and is full, is so unpredictable. We keep a lock on our refrigerator so he doesn’t drop a jar on the ground and eat around the broken glass. In the past, he has crunched on glass.
Because we have the autism you don’t usually hear about, when we speak about our family’s journey we are met with varying responses…
Those close to us will say “he must be upset we are visiting, upsetting his schedule”. Nope.
Recently an educator who should have known better implied Ben would be able to talk if she had gotten to him earlier. Thanks.
The autism community admonishes us for not appreciating the gifts and unique qualities of this autism. Sigh.
We don’t know why he didn’t respond to the same interventions that helped others talk. Why do some kids learn to talk while others cannot? The list of interventions we tried and continue to try are too numerous to list. But sometimes autism just unfolds.
Because he is also intellectually disabled he is served by DDS (Department of Developmental Services) In 3 years, when he turns 21, he will begin vocational work in day programs for those with IDD. Aren’t we lucky? After all, many people with autism don’t qualify for DDS because they have a high IQ.
Except those programs were never set up with autism in mind. Sensory friendly lighting? Limited background noise? Separate areas to compose oneself in a safe, calm area? The basic autism friendly adjustments are all but nonexistent. How can they expect success? How will this decrease behaviors? Answer: “Your behaviors are not a good fit for our program” is the party line.
Sheltered workshops are closing or closed. Although the chief objection to sheltered workshops is financial exploitation, wage-earning is not the primary purpose of many of these ventures. Importantly, workshop compensation typically represents just a small fraction of the benefits conferred on the disabled individual: the full support package may include Social Security Income (which can be reduced as wages increase), Medicaid-funded supports, in-home assistance, residential care, behavioral support, respite, recreation, and other therapeutic services. This does not even include the money paid to workshops for providing training and supervision in safe, structured environments – necessary structural fees that often dwarf the compensation paid directly to participants.
Without vocational options, a future of isolation is inevitable. I have no choice but to tell our story and try to create a better future for Ben.
A lawyer-friend of mine with a son similar to Ben also tries to create a better world for her son. She received this message on Facebook:
“I’m sick of looking at your feed and being told not to use the word retarded. I’m sick of being told I have to hire retarded people and spend my tax money to educate them. Doesn’t it make more sense to educate normals kids, they’re the ones who make a difference in the world and grow up and make money and have families of their own. That is what matters. How about poor kids who don’t get educated, who is a lawyer for them. At least a normal poor kid can grow up and be something with an education. Im sick of hearing that you have a retarded son, get OVER IT. Life is tough for everyone and I don’t feel sorry for you. Be a lawyer for people who really need it not for people who don’t even know you are helping them.”
No wonder you don’t often hear about our type of autism. It’s too hard to handle the day-to-day challenges, the isolation, the pushback from others with autism, and people who believe that social services shouldn’t be wasted on our type of kids.
With the future barreling at us like a meteor, I am in a massive hurry to create something for Ben for when he turns 21. It seems an impossible task. I need help. I appreciate The World According to Eleanor, for sharing our story. We need a movement to help us but this is a start.