#AuthenticAwareness of autism demands that we understand the mental and physical toll of unrelenting stress and exhaustion.
The family likes to take walks when the weather is nice, with their dog. S gets to ride on his adaptive bike, while they push him along.
By B Blake
I recently drove my son S to his aunt’s house, and I began to cry, overwhelmed by how difficult our life had become with his severe autism. As the tears flowed, I thought — I could check out of this life and drive us off this bridge, and we would be together forever.
That was the moment I knew I needed help.
Hi, my name is B Blake. I am 50, married, and have four boys. My oldest two children are from my first marriage, and my youngest, S, is 12 and has developmental delays and severe autism.
When S was a baby, he was behind with the typical milestones. He didn’t talk or play with toys and would often rock back and forth, flapping his hands, without making eye contact. He didn’t walk until three years old, and I began to suspect autism early on. Even in suspecting autism, there was guilt. Guilt that I had done something wrong to cause his delays. I was nervous, scared and probably in denial.
After he was diagnosed, I felt mostly relieved after we finally knew what was going on, but not at all satisfied. And today we still don’t have real answers. And for those who might judge me for my despairing thoughts, you have never lived the unrelenting stress that is my life.
“And for those who might judge me for my despairing thoughts, you have never lived the unrelenting stress that is my life.”
One issue is pure exhaustion. S has never been a good sleeper, and for years we have been falling deeper and deeper into this exhausted black hole of hopelessness. S has nights where he cannot fall asleep, and if something wakes him up, he is up for good. For example, last month our power was out for about 16 hours. S woke at 2 a.m. because it was too quiet and did not go back to sleep until 9 p.m. the next night. Being sleep deprived causes my fragile mental health to do a nosedive. I binge eat. I stuff donuts, chips, or whatever junk food is on hand into my mouth, and this, of course, leads to more weight gain which doesn’t help solve any of my problems. I become irritable and sometimes physically ill from the lack of sleep. I’m sure my work and relationships suffer as I become more withdrawn.
S also has issues with food texture and chewing, so all of his food is cut into small bite-size pieces. Drinking liquids is also difficult because he doesn't understand how to put his lips on a cup or bottle to form a seal and swallow. He has never grasped how to use a straw and instead bites it rather than sucks from it. We use a water bottle, but he’ll only take small sips throughout the day. Honestly, he’s probably often dehydrated as most of his fluids come from applesauce.
S is still in diapers and has no real sense of when he needs to go to the bathroom, which is exhausting as I look to the future and wonder if I’ll still be changing him when he’s 40 years old. He also has no sense of danger, and we have to keep a hand on him the majority of the time outside of our home. Even with a fenced-in yard, S has escaped twice and now we have padlocks on the gates. I am on edge 100 percent of the time when we are in public which is why we recently bowed out of a family vacation to Disney World. I knew the stress would be too much for me, and my family wouldn’t appreciate S’s outbursts.
When S gets excited he likes to clap his hands hard or smack the nearest person on their chest or back which is concerning because I know he isn’t trying to be mean, but the recipients of these actions don’t appreciate his enthusiasm. He also throws items, and we had to recently replace our TV due to his toy hitting it and shattering the screen. When he breaks something it just seems to be a reminder of how broken my life seems to be at times.
Since S cannot talk, it is hard to let new people into our life. I am terrified that someone will do something or take advantage of him, and I would have no way of knowing because of his limited communication.
My stress level is always on high alert, and I am up every two hours at night, looking in on S. I worry as he gets older if he will develop epilepsy, or start showing aggressive behaviors with the arrival of puberty as I’ve heard from other mothers. I also worry about what happens when we can no longer care for him. The stress has already affected me in many negative ways including weight gain, panic attacks, back surgery due to a herniated disc (from lifting and playing with S), and periods of depression.
That day when I thought about driving my car off the bridge was a definite wakeup call. When I am in a good state of mind, I would never dream of hurting myself or S! After that day, I didn’t recognize myself anymore and reached out to my doctor for help. She prescribed a daily antidepressant and although it's not perfect, I have more happy days now. It’s disappointing that my circumstances cause so much anxiety that I had to resort to meds, but it is what it is.
As a family, my husband and I work together to care for S, and we often allow S's 15-year-old brother to stay at his aunt's house because of how loud S can be. My two oldest boys have agreed to take over as caregivers when my husband and I can no longer do it. One is working on becoming a chef, and the other is now a behavioral technician working with autistic children. They love S and want him to be safe and happy, but I still worry that asking this of them will be a huge burden on their lives.
Our life with S has helped us as a family become acutely aware of the differences in people, and to abstain from forming snap opinions about a child who is acting out. Raising S has also made me kinder — which is a blessing in the scope of life. If I’m honest, being S’s mom has also made me bitter at times. I can’t, on a whim, go off on a girl's weekend — or even out for dinner. We always have to be sure that S is safe and happy, with someone to care for him.
The isolation is overwhelming at times because we tend to stay cooped up at home with him, and we don’t have family close by. Even if we did, I think it would be difficult for them to truly understand what we go through on a daily basis.
When I think about S’s future, I tear up. Honestly, I don't know. I would like to see him be able to do some things for himself like eating, dressing, and maybe even bathing! And, of course, talking at some point would be great; if I even dare hope for that miracle.
“Speaking of hope, I want to have hope, yet, I also don’t want to be disappointed so I live in this weird space of reality and hope.”
Speaking of hope, I want to have hope, yet, I also don't want to be disappointed so I live in this weird space of reality and hope. I think it is easier to say I accept S for who he is and continue to work on ways to help him communicate and interact appropriately with the world. I would love to get a residence for him near us when he becomes too big for us to handle. Ultimately, I want him to be happy and healthy, a desire I’m sure many mothers can relate to but I also need happiness for myself and the rest of my family, and I’ll continue to pursue this ideal until the day I die.
B Blake resides in West Virginia with her husband and two younger sons. She works full time at home for a medical billing company while also serving as S’s primary caregiver.
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