Life in a Box -Mother of Autistic Adults
You know how after a while you get so tired of job, you want to quit. Maybe it’s no longer fulfilling. You feel unappreciated and undervalued. Maybe it’s become monotonous, feels unproductive, like maybe you’re not growing enough as a person. It could be the unrelenting stress that has become just too much. Let’s not forget, the big one …you’re not being paid enough. Sometimes, it’s not even about the pay.
Many of my jobs have not been for money. They have been more about serving, caring for, and connecting with other humans. I must admit after twenty-six years as a mother, twenty-eight years as a wife, and eleven years as caregiver to my mother, I am the epitome of job burnout. I thought I was on my way to freedom when my children became adults. I was wrong.
I relocated for my job. I happily gave up my life in L.A. From “California Love,” we moved to hot, no-breeze-having in the middle of the park, hot, humid, blue dot in a red state, Republican-voting, Texas. I left a thriving life in L.A. where I had family and life-long friends, to San Antonio, Texas in 1996.
What was I thinking? I could kick my own ass!
But hey, the cost of living is cheaper. The schools are better. I can be more more available to my children. It’s safer than raising them in Los Angeles. It will totally be worth it.
One year to the day, after giving birth, to my first son Kendal, we moved to so that I could afford to be a full-time mom. What I did not know then, was that I was actually a special-needs mom.
It would be another two years before my son would enter the Preschool Program for Children with Disabilities. As he was approaching age three, I had him evaluated and he was diagnosed with a speech delay. I noticed his speech not developing alongside our neighbor, Christian, who came to my house for care while his mom went to work. The boys were four days apart in age. I watched Christian’s speech take off in the course of that year, while Kendal’s speech was garbled gibberish. This was 1998, the days before they were handing out autism and ADHD diagnosis like candy on Halloween.
Just as we were figuring out that Kendal had special needs, I was in the midst of baking baby boy number 2, who would also later be diagnosed on the autism spectrum.
I was already a bonus mom to my 7 year-old son, Adrian. My husband had full custody of him when we got married in 1994. Yep. I took on motherhood like a champ!
My husband saw me coming. This girl loves family. She spends weekends with her nieces. She will be a great mom to help me raise my son! Sucker!
So let’s count now. That’s one, two, three, sons, and two of them are on the spectrum. So much for my single party days. O.V.E.R. This was what I prayed for …a husband who loves me, and a family.
Can you see my eyes rolling up in my head? Yes. I’m rolling my eyes at my younger self.
Autism was not something that had ever been on my radar. It wasn’t a part of my dream. No one in our family had ever been diagnosed. I have a little ADHD, but even that has never been diagnosed. I learned to be a good B student (and that’s generous). I learned to compensate in areas of weakness with my charming personality. Their father has not been diagnosed, although to this day, I have my suspicions. Of course, he would vehemently disagree.
In those early years, my husband was traveling around the world, legally hacking into computer systems, doing Project Management, and later Executive sales for a major technology company. He was living the glamorous life of business travel, while I was stuck in Texas with no family support system. I’m sure he hated having a quiet hotel room with a door to close every night. No children to put to bed or fights to break up. Eating in all those spiffy restuarants must have been a real burden. Can you feel my resentment?
I tried going back to work as a Loan Analyst for World Savings. Between my husband’s travel, and no one to call when the boys were sick, teething with a fever, or just had doctor’s appointments, my attempt to go back to work failed. They didn’t pay me worth a damn. It got to a point where it wasn’t worth it. I had taken a forty-percent pay-cut from what I had been making in California b.k. (before kids). In my humble opinion World Savings moved their headquarters to Texas for cheap labor and tax breaks.
When the boys entered middle school, I started a blog…
Confessions of An Asperger's Mom
My friends on social media are real. Recently, I lost one of them. I met Kate Goldfield through this blog. Kate was a…
I started off writing mostly for myself as an outlet to help me keep some semblance of sanity during my loneliest days. The blog became a no holds barred, public diary of my day to day raising teenage boys.
By then we had moved to a suburb of Austin, Texas. There was very little diversity in their schools at first. My boy’s brown skin stood out in the sea of white students and teachers. I became heavily involved at their school as a volunteer, and as a part of their Individual Education Planning team. I made sure my presence was known at school to ensure that they got the best possible education. There would be no discrimination either because of their lack of communication and social skills, or the the color of their skin on my watch.
One of my goals in writing the blog was to spread awareness in my community online and off. After a while, word on the street got out to teachers and administrators in our school district. I made a name for myself writing about the boy’s education process. The staff at their schools knew they might get read publicly if they f*#%ed with my boys. I wasn’t beyond making phone calls to the Superintendent or the Texas Education Agency when there were infractions on their special education plans.
I also wanted the blog to paint a picture for our extended family who were not a part of our day to day. I used writing to describe the picture of the special kind of stress that had become my life. Another motivation was the hope that at least one person who walked in similar shoes, might read our story and feel less alone.
Writing “Confessions of an Aspergers Mom,” and subsequently starting the online autism support community, is one of the things I am most proud of in my life. It was not a lucrative endeavor in the least. Again, for me it wasn’t about money or popularity. It was about connecting with moms around the world. The blog and online community helped helped all of us find our people.
The blog became what I felt like was a success. I had thousands of loyal readers. I developed a public Facebook Community where I interacted with followers. They came to appreciate the honesty of my daily posts. I told the raw truth of my day to day life. The more stressed I was, the humor of my post became a huge source of relief. It gave all of us the freedom to laugh and cry together. We could admit some not so pretty truths and be met with nothing acceptance and love.
When my first born (Kendal) moved out of the house and in with his older brother, (Adrian) I started to slow down on the blog a little. By then I was fully saturated by stress, depression, and full of anxiety. I thought maybe if I changed my focus and set better boundaries, I could reduce my stress level. I was tired being an Aspergers Mom; tired of everything in my life revolving around autism and these boys.
Kendal was my child who took up all of the oxygen in a room. His behaviors were attention seeking and exhausting. This kid would actually stand in front of my car, so that I wouldn’t drive away. When I came home from say, the grocery store or brunch with a girlfriend, he would burst through the garage door before I could get out of my car. He was a lot!
After he moved I worked with my therapist like it was my job. She encouraged me to take more time for myself. I started traveling and having regular “me days.” The youngest son made it through high-school and was starting Community College, which gave me a little breathing room. I was making up for lost time; entering into a phase of indulging in self-care. I encouraged my readers to come along with me on the self-care journey.
Life with room to breathe was brand new to me. What do even enjoy anymore? I used have friends. I still had lifelong friends in other cities. I realized that my local life had become extremely small. It was time to get out the house and do adult things. I became active in the yoga community. I actually had the energy for social interaction again.
Then 2020, CoVid-19 and quarantine shut everything down. My small life that had just started to flourish, became almost invisible again. Kendal moved to California to live near my family. It didn’t mean that my headaches with him were over. They were just further away. I still worked to help him get connected into the mental health and autism community. I dealt with his anxiety-ridden phone calls every time he had a thought or a feeling, he felt the need to share it with me. A part of the reason I indulged him was my guilt and anxiety about having him so far away.
Quarantine life was like living with the two husbands I never wanted. 24/7. Work at home. College at home. Writing at home. Deciding on breakfast, lunch and dinner together. No social outlets. I thought I was going to die.
Every time I think I’m getting closer to freedom, something happens that makes me realize, parenting even so-called high-functioning autism may never be over. My life may never look the way I dreamed it would when my kids became adults.
At age 22, and 26, I am still learning, how to be their mother. Just a month ago I implemented new boundaries around intense discussions with the 22 year-old. He has matured enough to work on this boundary with me. We agree to table controversial conversations for 24 hours, sometimes longer, so that we are not as “activated” and end up saying all of the horrible things. Some things we won’t discuss at all until we are with a therapist.
My responsibility as their mother constantly presents new challenges. Last week Kendal sent me a scathing message via text. And by scathing, I mean the most horrible words he’s ever said to me. I was devastated. But it gave me the freedom to me create and sustain new boundaries with him. I no longer feel obligated to take his daily phone calls. In fact, I haven’t spoken to or texted with him since then. Whenever we reconnect, he will not have license to call me every day. Once a week, will be fine. I know that his anger towards me is projection about his own internal battles. I’m realizing now more than ever, that this is his life. One day I won’t be here. He will have to figure things out and connect with his own support system.
I have raised three black men in this house. Two of them are on their own. I have one to go. They all made it out alive. Now let’s just hope the cruel world will allow them to make it through adulthood.
Our marriage has survived through 28 years of all of these ups and downs. The last two years have been the most exhausting because of Co-Vid, and quarantines. My husband is no longer traveling on a regular bases. Business travel is what saved us for so long. I take my own occasional trips, but not nearly as much as I hoped at this point.
Motherhood is a lifelong journey. I’m getting better at it all the time. And by getting better, I mean divorcing myself from their outcomes, setting new boundaries, while knowing I have done my best. I have every right to be exhausted and to take care of myself like it it’s my new job.
To read more of our story visit my blog.