April means Autism Awareness and Acceptance month and I felt compelled to write about a realization I recently had about my oldest son, D who has autism. My realization was that he’s not a hero, he’s a person. I want to say that first and foremost, I got permission from him to write this post about him because at some point in the journey, it became his story to tell. I also got his permission because I’m trying to be better about boundaries when it comes to writing about the people in my life. I could actually write more about boundaries but that’s another blog post.
My oldest son was diagnosed at the age of 5 and I was 22. I’ve written about him in a previous post about how he was my hero because of all of the obstacles he’s conquered and how proud I am of him because of that. Here’s that blogpost:
One thing that I didn’t address in that post was how receiving this diagnosis meant me receiving a new identity, a mom with a child on the autism spectrum. Or we are often called autism warrior moms or whatever is trendy at the time. From the age of 22, this identity was deeply ingrained within me. I’ve lost count of how many articles or books I’ve read about autism. I’ve lost count of how many parent teacher conferences or IEP meetings I’ve attended having to fight or advocate for services for my son. I’ve lost count of how many therapists or counselors my son has had. You get my point. Being a mom to a child with autism is not easy. It’s hard, really hard. I’ve mentioned before how my child started to flourish between 3rd and 4th grade and he went on to be successful in his academic career throughout high school. Throughout all of this, I didn’t realize it but I put my child on a pedestal. I don’t know if it was the BPD or me being super excited about my son’s progress. Don’t get me wrong, it was a good and healthy thing to encourage my son and support him; but at some point idealizing him put an unhealthy amount of pressure that started to feel like a burden. I won’t say what happened next in this story but I will say that he’s now thriving as a regular 23 year old. I realized this week that at some point I stopped being an autism warrior mom. I think that I understood this sometime in 2016 after my son turned 18 but really accepted it this week. It’s weird when I used to start talking about myself, being a autism warrior mom would be one of the first things I would share and now I don’t feel the need to. When someone who knows me and my son mentions he’s quiet, I’m just like “well he’s just shy”. Like I first mentioned in this post; it’s just no longer my story to share. When I talk about my son, I just say “ he’s D, pretty awesome most of the time but kind of annoying at times.” I’ve also let go of this idealization of him I had. I still admire him and love him for who he is but he’s not a hero; he’s a person. He’s a person with his own set of issues and insecurities. He’s a person with goals and plans for the future. And talking to him, he wants to be seen that way. I also want to mention that I’m not speaking for all the moms with children with autism, I’m speaking just for myself. Getting here has been difficult but it’s been an important part of the process of me becoming not just a better mother, but a better person as well.
I wrote this poem in 2019 when I was reflecting on a past memory of my oldest son playing with Legos shortly after he was diagnosed with autism in 2003. At the time I was 22 and absolutely clueless at what his future would look like and it scared me. I was also clueless as to how to help him but knew that it would be up to bear the responsibility of making the right choices for so he could succeed. Being a parent in itself is rough; but being a parent a child with special needs is a different kind of rough.
Legos are scattered everywhere, as he tries to find pieces that perfectly fit Legos of different sizes, shapes, and colors waiting to be put together by a little perfectionist Legos that help create the universe that swirls around in his head Legos that help bridge him to others Legos that make him seem almost typical to outsiders Legos-beautiful-legos Hard to decipher the puzzle of what the pieces will become just little its creator
It’s been a long 4 years since I last blogged and two themes seem to follow: my dissatisfaction with life and the progress with my oldest son D, on the autism spectrum.
The Good: My boys- My oldest son D, graduated from high school in May with a 4.0 GPA and is starting the university next month. Also, he graduated with over 30 college credits and many honors and awards. He literally is my light at the end of the tunnel some days when everything seems so overwhelming and bleak. My middle child T, is the opposite of D, meaning he’s extremely social but does not do as well academically. He is definitely the most sensitive child out of my three sons and that presents challenges. My little one M, is now 6 and is as happy and energetic as ever. I always say he’s a good combination of my oldest and middle sons. He does well academically and is a social butterfly. I feel like aside from the usual childhood angst, nothing really gets him down. I envy him.
Other things- I joined a local Toastmasters Club and have grown more confident in my public speaking skills. I’m also on the board of a storytelling organization that empowers our local community by telling one story at a time. I’m actually proud that it was telling my own immigration story in October that prompted the board to invite me to be on it.
The Bad: I have severe anxiety and depression. Some of it is circumstantial. Some of it is just me and my awful brain. I took a job working from home with Child Support Services in October of last year and my mental health went downhill. Dealing with angry clients every day on the phone while also dealing with not the most positive work environment. Most people would argue that this would be an ideal work environment but for me it was just the opposite. For one thing, it’s fucking isolating, especially when the only human contact are your colleagues/supervisors via Skype and the angry clients on the phone (because about 75% of the people on the phone are ANGRY and rightfully so). The other thing is fucking technology not working right and being monitored on a continual basis. Both of these things just added to an awful and stressful situation. And of course, there is my husband who doesn’t have the motivation to find a job and therefore is home every day. I resented him more with each passing day. While I’m being verbally abused every fucking day, he has the audacity to tell me to get over it. And to top it all off, my “perfect” oldest son started skipping school because of his own anxiety and I couldn’t help him. It was a recipe for me feeling like a worthless piece a shit to everyone so eventually I decided to do something drastic (that’s another blog post). Eventually, I did quit that job and landed another job in February of this year (not high paying at all) for the school district. It’s a job working with high school students with special needs. It’s actually quite an amazing and rewarding job in many ways but not one that pays the bills.
So this awful summer, I have been out there again, looking for jobs and while I have gotten a few interviews, none of them have panned out. It’s frustrating and almost hopeless. I told my husband, “We are just going to end up at my parents’ house soon” because this is how I truly feel. He responds that we’re not but how can I possibly trust him when he does NOTHING to re-mediate the situation. I told him I’m probably going to end up in an institution or dead to which he said nothing at all. Maybe that’s the only response he can come up with. I stay in this relationship mostly for my children’s sake. I keep thinking there is a light at the end of the long tunnel that is depression but I can’t seem to find it yet.