I was connected to Sunday Stillwell via two other bloggers (Minky {moo} and Mom-in-a-Million). One blogger leads to another, and so on. We moms like to talk about our feelings, which may come as a surprise to all of you readers out there.
Sunday blogs about life as parent of two special needs kids at Adventures in Extreme Parenthood. She has mastered skills that I have not in three important categories: how to use Twitter effectively (REALLY effectively), how to create special needs memes of Ryan Gosling, and how to stay calm and happy in the course of raising not one, but TWO autistic boys. She’s just so compliant with the whole thing. I use that word because I am usually the opposite. I am still struggling against autism, like some sort of teenager who doesn’t want to listen to her parents, who have the wisdom and knowledge about the world that she still lacks, because she’s so stubborn about accepting the whole thing. Sunday just rolls with it, like some sort of yogi who inhales life’s problems and exhales peace and general “shrug-your-shoulders-and-move-on-ness”.
Another interesting thing about Sunday is her approach to “tri-parenting”. She did what many of us special needs parents wonder if we could accomplish, if our marriages were to end – she got divorced and found another person out there who was willing to fully embrace all of the responsibilities of raising special needs kids that most of us end up with, rather than choose. AND…she still hangs out – in the same room – with both of her husbands (current and past), even on holidays! High fives, all around, Sunday.
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I have two sons diagnosed on the severe end of the autism spectrum. Sam is nine and his brother Noah is seven. However, their similarities end there.
Sam and Noah make up a perfect example of ying and yang.
Sam loves music, playing on his computer or iPad while curled up under a heavy blanket, and playing his Nintendo Wii games such as Wii Music and Just Dance. He likes to escape into a world of music, foreign languages, and dance. Sam is my thinker.
During the entire time that I was visiting Sunday and her family in their home, Sam could be found listening to music via the TV or computer. This is one of his favorite activities. Autistic people often have an affinity for music. Having grown up playing music myself, this is one of the few areas where I kind of "get it". I can actually imagine how that music makes them feel, and how it can be a physical and intellectual form of input.
Noah LOVED those bubbles. He was a ball of energy, squealing with joy and chasing the bubbles down, constantly indicating to his parents that he wanted more.
Sam was diagnosed with autism at eighteen months of age. His diagnosis did not come as a shock to anyone. Sam struggled developmentally starting at birth. He reached his milestones very late if at all. He began speaking after the age of 4 and with countless hours of one on one speech therapy. He also received occupational therapy and attended a self-contained classroom designed specifically for children on the autism spectrum.
Noah was diagnosed just after his second birthday when I noticed he was no longer making eye contact, would not respond to his name when called, and preferred spending large amounts of time by himself. The doctor’s confirmation that he also had autism hit me like a ton of bricks to the heart. I felt as though something was stolen from me. How could a child go from babbling, smiling and talking to staring into space and crying out in pain when I wanted to hold him?
Even in their autism Sam and Noah are opposites.
Sam loves loud music and Noah will hold his fingers in his ears and hum loudly when it plays.
Sam hitting the "drums" and listening to the sounds. Like many autistic people, Sam is very interested in exploring the world of sensory input. In his case, sound is what draws him in.
Noah loves to run through an open field jumping in the air and Sam asks to go home and “play with iPad.”
Sam will talk non stop to another person about music and his favorite types of percussion instruments but Noah’s speech is made up entirely of scripts from his favorite Dora the Explorer episodes.
Noah is sensory seeking to the point of being obsessive while Sam avoids sensory environments like the plague.
Noah loves to throw, dribble, drop and toss things. He sat on this playground, watching how the wood chips and dust tumbled through the air and trickle through his fingers (another fascinating sensory experience for him).
However, despite their differences the boys do enjoy a few things side by side. They both marvel at bubbles, activities which include water, Baby Einstein videos, and last summer we learned they can’t get enough of a good carnival Ferris wheel.
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I am often asked about how I came to terms with raising two children with autism. It is not the easiest question to answer because I feel like it evolves and changes as the years pass. Ultimately it is my faith in God and my belief that He has a plan for every person He creates that comforts me most when I feel my sanity slipping.
This is Sam and Noah's "minimalist" room, which they have added their own design touch to with the help of crayons (I guess there are some universalities to all children, in this category). Noah does not sleep on a mattress at all, since he recently "filleted his bed like a fish" to see what was inside, according to Sunday. Sometimes, it's easier to just work with your autistic children starting at where they are than try to get them to fit into our world of beds and furniture. : )
(Maya talking here) This is Sunday and Mike's homegrown security method for keeping the boys safely in their rooms. The windows are blocked off with safety bars and wood to prevent the boys from escaping through the screen window (I recently had my husband put screws into every single window frame on our second floor, after a neighbor came to our door to inform us that our son's feet were dangling from our bedroom window). I don't know what it is about these kids, but they just love to escape. One of the similarities I've found between most of the homes I've visited for this project is the toddler doorknob block on important doors in the home. We autism parents often rely on this basic child-proofing tool in order to keep our kids from running out the front door into the larger, un-autism-proofed world.
In 2008 the boys’ dad and I separated and in 2009 we divorced. I hear the same statistics floating around the internet about 85% of marriages between parents raising a child with autism end in divorce and I can tell you that autism had nothing to do with the end of ours.
Bruce and I realized a few years into our marriage that we were two very different people. By this time we had Sam and we wanted to make our marriage work for his sake and also because we still loved each other very much. By 2007 I knew I didn’t have anything else to give to my marriage. It was my decision to end our marriage and my only regret was that I had to hurt someone I really liked in the process. The day I moved out of our home was the day I lost an entire family I cared about very much.
The one blessing during our divorce was that the boys took to the new changes and routine without skipping a beat. They spent every other weekend with their dad and the remainder of their time with me in our new apartment. Their school schedules were not disrupted and for the most part they seemed happy and well-adjusted to such a major change in their life.
Sam and Noah with their father, Bruce
In the beginning of 2008 I met Michael at a divorce ministry group run by our church. I remember the moment I realized I liked him. He had come over a few times with a group of people to help me finish some odd jobs that needed to be done and each time he went above and beyond. He was always the first one there and the last one to leave. He replaced two bi-fold doors that were broken and in the process of cutting one down to size nearly fell over the edge of my second story deck. I fell for him just as hard and within two weeks we were talking on the phone, emailing, and realizing we were falling in love with one another.
In September 2009 Mike and I were married and the boys and I left our apartment to move in with him. The boys liked Mike and his big dog, Ernie, and Mike loved rough housing with Noah who seemed especially drawn to him.
That first year of marriage was a real learning experience for all of us. Mike got a crash course in being a parent to two children with autism, Bruce made some occupational changes which allowed him to be a larger part of the boys’ lives, and I found myself writing a blog and entering the world of social media, where I found an amazing network of special needs parents like myself in desperate need of a community for support.
I have often heard it said that it takes a village to raise a child and I believe that is especially true than when raising children with autism or other complex needs. In our family our village includes doctors, therapists, teachers, aides, and friends. But I truly believe what makes our village special is that ours is lucky enough to include three adults instead of just two.
Together Mike, Bruce and I celebrate the major holidays, the boys’ birthdays, sometimes we go to lunch or dinner together, and when taking the boys on field trips it may include all three of us together, myself and Mike, or just Bruce and I. We have proven that a marriage may end but working together dedicated to our children and their needs does not have to.
by Maya Wechsler
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