Mother’s Day in the U.S. was this past weekend. And it got me thinking about being an autistic mother. Not too long after I got diagnosed I did try looking up information on autistic mothers. I couldn’t find much online. I did find a couple of good articles but otherwise a lot of results for Autism moms showed up. Which is not the same thing as an autistic mother. An Autism mom has an autistic child and advocate’s on their child’s behalf and they usually are a part of an online community of other autism parents/caregivers. I did read a couple of books by women who were diagnosed late in life. And they did mention motherhood but it was not the focus of their books. They’re really good books about autistic women diagnosed late in life. They are Odd Girl Out: My Extraordinary Autistic Life by Laura James. And Autism in Heels by Jennifer Cook O’Toole.
So like I said there is not a lot out there about autistic mother’s even though I’m sure there are numerous of them. People tend to forget that autistic children grow up and some of them will become parents. While I cannot describe what all autistic mothers are like I can describe what one mother is like; myself. So I will share with you what this one autistic mother is like.
When my husband and I decided to have a child I didn’t know at the time I was autistic. I did know I had an anxiety disorder, a history of depression and some minor health problems. I also knew there was a chance I could possibly lose my ovaries one day due to dermoid cysts. My doctor described them as having characteristics of a tumor and a cyst. And I had one on my right ovary the size of a lemon and one on my left ovary about the size of a grape. My doctor removed the one on my right side and he was unable to remove the one on my left. He said if he removed the one on my left I would lose my whole ovary because the dermoid was located in the middle of my ovary. He knew I wanted to preserve my fertility. The dermoid that was removed was benign. But my doctor said my dermoid could come back and there was a chance my ovaries could eventually be removed. It was a small chance but I wanted a baby right away.
So all this happened while my husband and I were engaged. I persuaded my husband that we should try for a baby not long after we got married. Our daughter arrived summer of 2015. Pregnancy was awful! I have sensory issues so all my symptoms were amplified. I had morning sickness for 16 weeks and I was fatigued the whole pregnancy, I found out my 3rd trimester I was anemic so that explained the severe fatigue. I had more serious issues in my 3rd trimester. It was hard. I was happy (despite having many health issues) right until the 3rd trimester.
There were some minor complications during labor and delivery. And my daughter was born with a 102 degree fever. Tests had to be run to make sure there was no infection thankfully she turned out to be fine. But between that experience and my history of depression a storm was brewing. I ended up having postpartum depression. I loved my baby very much but was afraid something would happen to her. I checked on her constantly when she slept. And I washed my hands like crazy to make sure I wouldn’t get her sick. And I had thoughts of suicide because I felt I wasn’t good enough for my daughter; this irrational thinking wasn’t helped by my inability to produce enough breast milk. Luckily I overcame postpartum depressions with the help of a support group, therapist and medication. By the time my daughter was 6 months my postpartum depression was manageable. And I really started to enjoy motherhood and had so much fun being a mom.
Around that time I had decided to go back to work because money was tight and I missed interacting with grown ups. Of course by the time I started working, my daughter was fun to be around I missed her like crazy while at work. She wasn’t happy at first about being left in day care. And that broke my heart. But later she loved it. Currently though I am staying at home with my daughter. I went from working mom, to working as a nanny to a stay at home mom. I wish I was still a nanny but I got really sick last year and was in no position to take care of someone else’s kid, I could barely care for myself at the time. So I’ve been through all sorts of work situations as a mother. Working as a nanny was the best situation for me as a mom. I wish I could continue to do that. I got to spend time with my daughter, my daughter called the girl I watched her sister, I felt useful and made money. I feel better about myself while working even if I’m not at the best work environment. My favorite job I’ve ever worked was being a nanny because it was a great job all around.
Right now being a stay at home mom is hard. I feel like I need to work outside the house to be ‘useful’. I clean, do laundry, take care of my daughter, manage some medical bills, take of my daughter to her appointments and take myself to my appointments. But I have this idea in my head I’m not doing enough. Right now we have her in part time preschool so I can go to my appointments without bringing her along. She has a very hard time sitting still during my appointments. Having her in part time preschool helps me. But I feel guilty because I think I need to have her with me at all times to justify being a stay at home mom. I love my daughter very much and work very hard to take care of her. But I’m just full of guilt for not being healthy enough and for not being the perfect mom. Which I know is ridiculous because there is no perfect mom. Also I realize neurotypical moms also experience some form of mom guilt. But I feel like I have to work harder and prove my worth as a mom due to my chronic health issues. Also since I’m choosing to be more open about being autistic I put pressure on myself to prove I’m a great mom. I know these are unnecessary expectations to impose on myself but I have a history of having unrealistic expectations for myself. It’s a hard habit to break.
Being an autistic mother is exhausting. Sometimes I need space to wind down so I can have more patience with my daughter. Sometimes I need to walk away from my daughter so I don’t end up yelling back at her. Sometimes I still end up yelling at her for yelling. Sometimes I get upset that we are constantly late to places. Sometimes I feel like I’m losing my sense of self when taking care of my daughters’ special needs. Sometimes I feel ashamed for being too overwhelmed to hold my daughter, I hold her anyways. Sometimes I get bored playing my little ponies and wish she was old enough to watch documentaries and discuss current events, but I play anyways. Sometimes I cry about having to raise my beautiful, sweet daughter in this cold, cruel world.
But being an autistic mother is also amazing. My daughter is one of the best things that has ever happened to me. I always love her and she’s always teaching me new things about love. She helps me open up my heart to love more and more each day. I see awe and hope in her eyes. I get to love someone who loves me (mostly) unconditionally. Sometimes I’m a mean mommy because I implement consequences for poor behavior. But the next 30 minutes I’m the best mom in the whole world. She loves when I read to her and knows all of her letters. She asks a million questions a day and loves to learn. She’ll listen to music and dance with me. She has a good eye for detail and is a wonderful artist. She warms my heart everyday with her sweet kisses and hugs. My daughter has helped me find out how incredibly strong I am, the moment I brought her into this world. She reminds me again and again I have the strength to bring her up in this world. I’ve learned I’ll do anything for this girl. My daughter has taught me how to appreciate my own mom. And I get to watch how strong and determined my daughter is despite her own special needs. And I can see how kind and compassionate she’s going to be because of her special needs. And I get the privilege to be her mom.