A few weeks ago, my Butter was especially hard to get up and around in the morning. He’s not able to communicate verbally, so this gave me cause for concern that he was feeling ill, or perhaps was upset by staff changes at his day program. Without an obvious cause, I could only guess. When his motivation improved the next week, I attributed it to better weather, better health, and maybe better sleep.
One day just before Halloween, I went to wake him and start his morning routine. He was all stuffed up and sniffly, so I decided to keep him home for the day to rest up. I didn’t ask him, I just quietly closed his door and let him sleep. By the afternoon, he was up, pacing back and forth, and very loudly vocal. His father commented that he seemed restless, but I thought it was more than that. Frustrated? Anxious? The next morning, he was up and ready to go before I even got out of bed! Strange, unexplained behavior! Stranger still, he went into the bathroom and I heard him using his electric razor by HIMSELF. What the….? They were having a Halloween dance at his day program. Maybe that was it.
I was surprised –absolutely shocked, really– to read yesterday’s note in his communication log that said that he’d made a friend, and she would like to arrange to see him outside of their time at day program. I read the note several times, allowing it to sink in… A FRIEND! AN INVITATION! HOLY COW!!!
I gave permission to share our contact info, and later that night I got a call from Butter’s new friend. She told me that a few weeks ago, her power wheelchair had broken and she couldn’t attend program for the week. (Hmmmm… about the same time that a certain someone didn’t have an interest in going to program anymore. Imagine that!) We set up a time for all of us to meet and eat lunch together. I was excited, and nervous, and a bit shell-shocked by the idea that Butter had developed a social life that I didn’t know much about.
Tonight, I got another call from this lovely young woman. She wanted to let me know that today Butter played disc golf with a group. When he came back and she asked if he had fun, he repeated, “FUN!” Let me repeat that. My big, sweet, non-verbal guy said, “FUN!” And he said it in response to a question. Be still my heart. Feeling the tears starting to come, I thanked her for telling me, saying that he can’t share what happens at program when he comes home. Her reply:
“I know he doesn’t talk… but if it’s okay with you and him, I can tell you what happens every day. I can be his voice.”
The bedroom door creaks open, spilling in the unwelcome light from the hallway.
Instantly, I’m awake. A glance to the bedside clock. 3:21 AM.
“Ummm… Mom?” comes the loud whisper of my daughter.
And I know.
I know in the way that every mother knows what to do when a door opens in the middle of the night, and a child’s voice asks for Mom.
My husband twitches in his sleep. I stumble out of bed, over the basket of neatly folded laundry that somehow never makes it into the dresser across the room. I go to her, moving in the familiar dance of Motherhood. She is my youngest of three. There have been many night whisperings and cries for help before this. A terrified toddler with a bad dream to share. A feverish forehead. A cautious babe seeking shelter from a booming thunderstorm. They come to me, and I go with them.
Two hours later, her hair washed clean of her sickness and her body smelling like baby powder, she crawls into her freshly made bed and once again closes her eyes.
The floor needs to be scrubbed. And the bath tub.
There is laundry to do. Lots and lots of it.
Downstairs, I notice the empty bottle of two-months-outdated pineapple juice sitting on the counter. I’d cleaned out our minibar fridge earlier, and the half full bottle had gone in the trash. Yet here it is, empty.
Abandoning the overflowing laundry basket, I shoot off like a world-class sprinter. Up one flight, two flights, three. In my son’s room on the third floor, I see his oversized water bottle on the floor, empty. The foul pineapple juice is gone, and he is in bed rubbing his stomach. He does this… with whiskey sour mix, lemon juice, and even once with vinegar. I clean out the trash can and place it near his bed in preparation for the inevitable sickness.
As the sky lightens with the first sun’s rays, I settle in for what I hope is a few more hours of sleep.
Later, at a more reasonable hour, the plans to attend a family outing will be canceled with a tired-yet-familiar-to-everyone apology, my well rehearsed Sorry-But-We-Can’t-Make-It speech.
Motherhood may not be for everyone, but I love it.
I love them.
I wouldn’t trade my life as a mother for anything.
This is my life. This is my family. This is my day.
Forty years ago we did not see people with autism in the community, because most of them were locked behind walls of institutions from an early age. Today, they are living in our communities, which are also their communities, and teaching us all exactly what they have to share with the world. That’s progress.
I am a believer in awareness that leads to education and acceptance. When my son was younger, I harbored some negativity about the public jumping on board for one day/month every year and then disappearing the rest of the year. I thought it was a way of making themselves feel good. Now I see that there is nothing wrong with that. If acceptance starts with one day of them feeling better about themselves, so they want to continue to raise awareness, then so be it. That’s progress.
My son is now 20, still non-verbal and severely autistic. If the world can look at him when he’s jumping and flapping in a grocery store line and realize that he has autism, and that through his flapping he may be expressing that he is happy or overstimulated, then he may be able to navigate his community and forge relationships more easily. That’s progress.
It’s not a perfect world. People with autism and other disabilities continue to be excluded, bullied, and sidelined. Wearing blue and displaying blue lights won’t solve everything, but it is the beginning of our world moving toward acceptance. My wish for my son, and for those who are on this journey with us all over the world, is that we continue along this path. In the past half-century, we’ve gone from locking people with disabilities away because we believed they had nothing to offer, to celebrating that they exist. That’s progress, my friends. Progress.
Today I spoke in front of our Health and Human Services Committee, sharing the details of my family life over the last nine months since Butter graduated from high school and the bottom dropped out while we continue to wait for adult services funding. My voice wavered and tears stung my eyes several times during the presentation, but I willed myself to get through it. It never gets easier to share the intimate details of aggression, self-injury, problems juggling work, health issues from living with stress, sacrifices made by my other kids, and the overall train wreck that is sometimes the Mother Autism life. The best possible outcome is that they will hear my testimony (and that of other parents going through this and worse… some have divorced and lost their homes due to this 1000-person waiting list), and increase the cap (currently only 21.5 hours/week) to 40 hours/week, so that these adults with intellectual disabilities and autism will be served, and families will be able to work outside the home instead of losing income because there is no appropriate place for the disabled to go. When I finished my presentation, several members of the committee looked sympathetic, even relieved that I was done speaking… They could see that it was painful for me to share our situation with them. That’s okay. Sometimes we need to let others see our pain. Sometimes knowing that you can ease the pain of others is a powerful motivator.
Here’s what I said:
I’m here today to tell you about my twenty-year-old son, who is non-verbal and has autism, and graduated in 2014. We’d made the decision to keep him in public school for as long as we were able, even though that meant he didn’t get to march in his high school graduation with those peers who had learned sign language and attended his birthday parties. We chose to sacrifice this because we were trying to bridge the gap between children’s services and adult services. It may not seem like a significant sacrifice to others who are not in our situation, but understand that my son will most likely never graduate from college, get married, or have children. What’s left? Graduating from high school with your friends around you.
Once he’d graduated, he lost the 40 hours of structured programming provided in public school. As a person with autism who finds unstructured time stressful, he began showing increasing aggression and self-injurious behaviors. There were adjustments made in our family life. I’ve had to dramatically adjust my work schedule to be home with him while his name lingers on a wait list for adult services funding. While I am a warm body at home with him to keep him safe, I am working as best I can, and can’t neglect the duties of my job to take him into the community and be his direct support worker.
My son is someone who requires a great deal of physical movement to regulate his moods and behaviors. Between school and his Section 28 services, he was able to participate in physical education every morning, and accessed the public pool and walking trails. He even volunteered at a fitness center over a period of several years, where he developed confidence and social relationships with community members. Without funding for support services, he has only been able to visit the gym twice per week. In the past nine months, he has become depressed and developed compulsive eating habits, which in turn resulted in a weight gain of 25 pounds. I suggest to you that most of us would be depressed and agitated if we gained that amount of weight in only nine months.
His doctor has authorized an increase in medication when my son is especially agitated, but it should be noted that he did not need this additional medication when he was adequately served. Is medicating a better choice than providing support to someone who wants to be engaged in his community, and has so much to offer?
We have had to lock up our food and suffer through his rages because we’ve made it harder for him to use food as a coping strategy. Our family has made sacrifices and accommodations to keep both him and us safe and functioning as best we can. DHHS/OADS consistently suggests that families utilize respite funding and “natural supports” as an alternative when structured programming isn’t available. I find this to be insulting and frustrating, when families are losing jobs, homes, dealing with increased behaviors, and watching their loved one lose skills which have taken a lifetime to build. How can he access natural supports, when his aggression is escalating and his ability to regulate himself decreases with each unstructured day?
My son is a young man who, less than a year ago, was able to regulate his behaviors without increased medication, engage socially with the use of his communication device, and follow a structured schedule with 62 hours per week of school, transportation, and Section 28 supports. For the other 106 hours each week, he was calmly engaged in day-to-day family activities. I’d like to note here that the increased behaviors, the need for additional medication, the weight gain and depression… this has all occurred while my son continued to receive 22 hours per week of Section 28 [home and community] supports. This is especially concerning, since the current cap for Section 29 services is less than the amount he’s been receiving. Where do we go from here? Crisis services and/or hospitalization will be significantly more costly, both to MaineCare financially, and to our family emotionally. We are asking for you to increase the cap on funding for Section 29 services, so my son and others like him can have needed and deserved support.
Thank you for your time.
Butter is a compulsive eater, meaning he needs to “finish” things.
You know the whole Lay’s potato chips slogan, “Betcha can’t eat just one” chip? Well, they won that bet, hands-down.
In the past few years, he’s emptied vinegar bottles (ugh!), 100% lemon juice bottles (double ugh!), Cosmopolitan and Whiskey Sour drink mixers (just plain YUCK!), as well as more desirable things like cheese doodles, frozen pizza, chicken nuggets, and six liters of soda in a single night. He’s eaten birthday cakes before we could celebrate, licked the icing off ALL the cookies intended for my office Christmas party, and most recently, he devoured twenty Hot Pockets (pepperoni pizza flavor, to be exact), in less than 24 hours. At least he cooked them first.
We hide food in the strangest places. Sometimes we don’t remember where we hid it, only to find it with gray fuzz months later. More often, he finds the hiding spots and we’re forced to find new ones. He obsessively “free ranges” at night, when he should be sleeping. He has been known to visit our fridge in the garage, looking for the soda that he couldn’t find inside.
We want him to modify his behavior, since locking things up teaches him nothing, and since he has managed to circumvent other locks in the past. So we dealt with the free ranging, pantry-emptying, fridge-raiding, and put off locking things up for a few years. There are many reasons, not the least of which involves not wanting to live in a home where the whole family suffers because autism has taken away yet ANOTHER basic freedom.
Unfortunately, we’ve been unsuccessful with teaching him portion control, as his compulsive behavior overrides his stomach… and in some instances, his taste buds. Hello, VINEGAR!?.
So here we are.
Today we have installed a ten-digit passcode lock on a room just off the kitchen area, where we can keep the things that he may “over-indulge” in, should he readily have access.
It’s not a perfect plan. I could foresee some of the scenarios playing out as we installed the lock… and as I type this, I can hear him pacing and making his “unhappy noises” from the kitchen.
THIS IS AUTISM.
Sometimes nobody wins.