The Autism Mother Letters: ๐ #2
"Different Boat" A Letter To My Fellow Moms Raising Autistic Kids
Welcome
Hello! Iโm Emily Lupita. Iโm a travel writer & artist from rural Iowa currently living between my hometown south of Des Moines - and Ankara, the capital of Turkiye. Iโm also an English teacher & editor.
The Autism Mother Letters is a series of illustrated letters ๐ written to my fellow Moms raising Autistic kids on - Emily Lupita Explores - my creativity journal where I share โexplorations from my art desk & cultural travels, as well as motherhood with my two Autistic sons.
๐ #2 โDifferent Boatโ
Dear Mama,
My mission with this letter series is to reach out to my fellow Moms raising Autistic kids. I hope by sharing my story, you will see that you are not alone.
My two sons are both Autistic. Archie, now age 6, is diagnosed with level 2 ASD, and Charlie, now age 9, is diagnosed with level 3 ASD. (You can read about the signs and symptoms of Autism Spectrum Disorder [ASD] on the CDCโs website.)
Both Charlie and Archie have been in therapy and under a doctorโs care since they were 18 months old (the earliest diagnosis possible at the time) and are legally classified as intellectually disabled.
Itโs emotional for me to write about my boys. I tried writing these letters last year, but it didnโt feel good so I stopped and went silent instead, which didnโt feel right either. Iโm beginning again.
Different Boat
Grief is not a word usually associated with becoming a mother. But when I talk with my fellow Moms raising Autistic kids, and we get all the small talk out of the way - and we start discussing the core feelings of our daily lives - of course, the primary emotion is love for our beautiful children. Of course, it is. But the other core feeling I find that we have in common - is grief.
Feeling grief is not acceptable for mothers of Autistic children in our culture. We are expected to be positive always and perk up whenever anyone asks us how weโre feeling - respond with a spirited smile and say, โIโm fine. Iโm blessed.โ
Indeed, I am fine. I am blessed. I have seen the world with my own eyes (17 countries and counting) and I realize that I am one of the most blessed people on planet Earth because I have a safe place to live, food on my table, and my precious children next to me.
And I am grateful. I believe in gratitude. I practice daily gratitude. ANDโฆI am grieving daily.
Think of it like this - thereโs a storm. And weโre all in the same storm - riding the waves together. Or itโs a gorgeous day out on the water and weโre all coasting along enjoying the sunshine - either way - Autism parents are in a different boat than parents of neurotypical kids. It seems unacceptable to say or acknowledge, but thatโs my honest truth.
Weโre in a different boat. We just are.
And soโฆwe have a totally different experience out on the water.
We can stay out there for different lengths of time.
We have to have more preparations to leave shore.
We get crushed in the waves more easily.
We canโt go as far as fast.
Some of us donโt have lifeboats in case of an emergency.
Some of us are sinking, literally drowning in our daily lives.
My Experience Matters
My experience is that I am grieving the time spent in doctorโs offices instead of with grandparents as specialists poke and prod my beloved sons. I am grieving the time spent at therapy instead of playgrounds as specialists pull and stretch my beloved sons. I am grieving their first day of kindergarten in a mainstream school with their peers. I am grieving our conversations after school about their day. I am grieving knowing their favorite color and cartoon characters and how they like their hair styled. Because they cannot tell me these things. Not yet. Maybe never.
I am grieving the words of their pediatric neurologist who said, โYour sons will most likely never work or live independently or have a family of their own.โ
We still belong on the water. We still feel joy that weโre out sailing on the sea of life. But how else am I supposed to feel about this diagnosis - this boat that I canโt figure out?
I feel joyful that my sons are here with me. AND I grieve that they do not / will not get to experience life in all the ways that most others do. I think itโs natural to grieve a life-long chronic condition for our child. I think it is harmful that the โrightโ to grieve is taken away from Autism mothers in our society.
This is my life experience as Charlie and Archieโs mother.
There is grief in my life and I have a right to feel something in my heart about it.
And so do you. You have a right to your feelings. Your experience matters.
I Do Whatโs Best For My Family
It is important for me to say that I believe Autism - and Neurodiversity in general - is not just ALL something to grieve. Absolutely not. Itโs a Spectrum - as I know youโve heard so many times. Iโm also neurodivergent. I also experience real fundamental challenges. But there are gorgeous & magical benefits as well. As one small example - check out The Autistic Mom by fellow Mom, Julie Green, where she regularly includes posts about a few of her favorite (Autistic) things.
This is such an important point, I believe, to understand this range of life experiences based on level of need, accommodations provided, resources available, and overall support.
For example, my son Archie is 6 years old and has had intensive (basically daily) therapy since he was diagnosed at 18 months. He has specialized swimming lessons, goes on horse therapy rides, and has a 1 to 1 reading teacher who assists him with his homework. Archie has made such incredible progress - he is blossoming.
But if he were in a different situation where he did not have an early diagnosis and he did not have specialized therapy and he did not have appropriate accommodations at school, then he would not be blossoming in this same way. We have the resources to provide this support to Archie, but my parents did not have the resources to provide this type of support to me and my siblings. And my grandparents had even less opportunity to provide support for my father and his neurodiverse siblings.
There are Autistic children all around the world who will never get the chance to develop their special gifts because our modern society does not provide the support they need. Isnโt this something to grieve? This loss of the incredible giftedness of our neurodiverse children and adults? If I didnโt have the resources to provide for Archie in this way, I would grieve that loss for him. But since the accommodations seem to be working and Archieโs making his way, I donโt grieve for him anymore like I used to.
That grief I felt when Archie was a toddler and all the specialists were telling me he would never be independent - itโs being healed now. But it was very real when he was younger. I felt like I wasnโt allowed to grieve for Archie OR for Charlie then, and it was harmful that others dismissed my fears and worries. It was harmful to shame me for having normal human feelings.
What Can I Do?
Looking back, it would have really benefited me to have another mother say:
Here are some resources to get you started.
Seek support so you can do whatโs best for your family.
I canโt go back in time, but what I can do now is tell my story to my fellow mothers out there who might feel similar to how I felt. I can also be honest and say that I still grieve Charlieโs diagnosis. Charlie is now 9 years old and has had all the same opportunities as his younger brother. But Charlie never started using full sentences. Charlie still has trouble holding a pencil and writing, although he can read and write now, which the specialists told me he would most likely never be able to do. Charlie still has extreme stemming, elopement, and some self-injury.
Charlie is making his own progress on his own timeline. Heโs on his own Autism Spectrum journey thatโs different from his brotherโs even though they have access to basically the same resources and support. I donโt know if Charlie will ever be able to live independently.
I can see the benefits of Archieโs neurodiversity shining through. And I cheer him on daily. But Charlie - he struggles so much every single day. I also cheer on Charlie daily. Iโm the one who walks beside him every single day as he confronts these challenges. His father, Archie, and I are the ones who witness and support Charlieโs struggles behind closed doors every single day.
How will we take care of him as he gets older and bigger and stronger?
Who will take care of Charlie when me and his father die - hopefully not for a long, long time - but - tell me - who?
Archie? Is this fair to expect Archie to provide a lifetime of care for his brother?
Will Archie even be able to take care of himself AND his older profoundly Autistic brother?
Tell me - WHO - will care for my son Charlie when heโs an old man and still needs 24/7 assistance and support?
How can their father and I - as we do now - make sure Charlie and Archie are both loved and supported in the appropriate ways - except do it from our graves?
How do we construct a boat that can keep on sailing by itself if our boys canโt take over the Captainโs chair after we are long gone from this Earth?
Weโre trying our best to figure that out. I know many families who are in similar situations - in similar boats. It helps to know that we may be in different boats, but we still belong out on the water. Weโre not alone out here. Letโs link up our boats for a while and share our stories.
Iโm a neurodivergent mother of neurodivergent children and my family belongs. Iโm here to tell my story so that my fellow mothers raising ADHD / neurodivergent / Autistic children know - your family also belongs. You. Are. Not. Alone.
Love from one ๐ mother to another,
Iโd love to hear your ideas. Please share your thoughts with me in the comments.
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