To say that motherhood is blissful and wonderful and awesome and beautiful and fulfilling and laughter and rainbows and flowers and kisses and hugs and bows and bow ties would be describing a fraction of it. A very small fraction. The fraction that stays with us because it’s the happy one. Because when it comes to our kids, we cannot and do not want to remember any moments that were less than perfect. We repress these memories forever. Our kids are perfect, to us and that’s all that matters. Even if they have that slight lisp, even if they walk with a little limp, even if they have had hearing tubes as a baby for repeated ear infections, even if they had to get a tonsillectomy for recurrent sinusitis, our babies are perfect. Even if they had leukemia when they were 2, even if they had to get a kidney transplant, even if they went through an open heart surgery to repair a VSD, they’re perfect. It’s easy enough to forget most of the tiring, dull , exhausting , godforsaken moments when you hear your child talk, play, laugh, love and live to the fullest. We take pride in returning them to health. And we should. It’s a victory over life and what it sometimes so mercilessly hands to us. But very few victories come our way when we are dealing with special needs that are cognitive in nature.
My relationship with autism is bittersweet. It’s bitter because it took my child from me. She is a different person from most. She is 9 but has limited cognitive function. She’s a fun-loving girl in the restricted way most autistics are. But her areas of interest aren’t where she would make friends with other kids.
My relationship with autism is sweet because that’s who my daughter is. Seven years into it I have realized that autism isn’t my enemy. Because autism is Minha and Minha is autism. And my daughter is pure love.
Whatever I may say about my in-laws, they were the first to pick up on signs of delayed development as early as when Minha was 3 months old. Guess it’s hard to believe people who have never been openly antagonistic but are subtle in their back-handedness, sophisticated in their insults and sarcastic in their compliments. However, they did pick it up as early as 3 months.
I’m a physician but had rarely heard the word. I didn’t worry about it much because soon Minha was ahead of her peers. She was talking (repeating), quite athletic for an infant and wouldn’t sleep all night. While I was a resident in an intense internal medicine residency, my husband stayed home on parental leave for a year. He didn’t pick up signs and I didn’t either.
We couldn’t ignore for long stereotypical hand movements and lack of communication. We had her evaluated. We were told she had autism.
To say that the world crashed around us would be an understatement. I was recovering from a miscarriage and a major issue at my residency while my husband had just been laid off. Perfect American Life? By no means.
Minha started early intervention four months after her second birthday. She started with speech, ABA, OT. She started a preschool for special needs kids in the fall of 2012 when she was 3.
I have experienced pretty much the whole spectrum of the services and providers of these services. Don’t think that this is their calling in life universally. Most of them are bad therapists who are in it to make a pretty penny as the government is willing to pay anything to get more resources mobilized to curtail the epidemic of autism.
I’ve met women who are aces at what they do. And women who are total nut jobs and wouldn’t be hired by the local grocery store to guard the door, they’re so insincere. But when something is provided by the government you can’t choose. You’re just glad you made it to the top of that wait list.
We moved to DE from NYC in 2013. Minha started more private therapy. Her days were full of therapy. If you ever wanna know what would hurt you more , your kid getting bruised while cycling versus your kid trying to learn biking with an OT, yup you got it! All the bruises in the world won’t hurt me as much as it did to see Minha working on a SPECIAL trike with an OT and a PT and still struggling for weeks. (My mom finally jumped in and said “what the hell” and Minha is an ace bike rider now. All thanks to my mom who doesn’t think autism is limiting, bless her heart).
Minha is still learning to talk. She has few scripted sentences. She usually uses her iPad and the program on it to communicate. She goes to an autism school. She spends most of her week at school or therapies. She is on a restricted diet and a multitude of supplements.
I know many of you are struggling. Some of you struggle to get the diagnosis, some struggle to accept it and some struggle to live with it. Some of us also struggle with our partner acting out at the same time life starts to act out. My husband became as much of a chore as Minha’s therapies were initially. He mourned the child he thought he had. He grieved for a child still alive but lost to autism. His grief is very unique. He is the most dear man but can’t express his feelings to save his life.
My relationship with autism is mostly calm and sophisticated. I hope all my autism sisters find that inner calm.
Not all days are calm. But not all days are supposed to be calm. Life is supposed to be chaotic 3/4 of the time. Life isn’t perfect. Life is bittersweet too. Just like autism. My child will define her own autism in time . That will be her success story and it’s already in the making.