Sometimes I watch other parents with their “typical children,” and I wonder what life is like with that kind of child. Things like back and forth conversation, silly questions toddlers ask, so natural and innate. I always wanted a big family. I have only one child, which makes my life, my experience, very exclusive. I am in a small community even within my own autism community. There are families who have more than one child on the spectrum, and there are families who have one child on the spectrum and other children not on the spectrum. Truthfully at times, it is difficult to accept that I may never have the relationship I observe and study with any child.
This unexpected life is described very well in the special needs poem Welcome to Holland by Emily Perl Kingsley. In this poem the parents are en route to Italy. They have researched and carefully prepared for an amazing adventure there. Geared up and excited, they anticipate a wonderful trip. When the plane lands, the flight attendant says, “Welcome to Holland!” They are not prepared for Holland, it is completely different than Italy, and it wasn’t what they were expecting.
My experience parenting a child like mine is just like that poem. I have had to discover new territories, speak new languages, and use my survival kit to manage this life. At times it is extremely rewarding. Other times it is the toughest and loneliest life on the planet. I know I am part of a community but because no two people with autism are alike, I find myself navigating on my own as each milestone is mastered or developmental set back happens. I find myself angry at times because my child has challenges and always will. As a mother, I want to rescue him and take all his pain away. His happiness means everything to me. I have realized my son may never have specific relationships with other people or experience them in the way I had once wished and hoped for. As with most things on the autism spectrum, relationships look and feel very different.
I once read about a young man living with autism who explained what relationships mean to him. His relationships are built upon the objects within his world. His map collection was a special relationship for him which fulfilled his need to connect and spend time with something, he explained, and it wasn’t necessary for the object to be another human. Interestingly, as mammals we are programmed to seek out others like ourselves and fulfill a need to be connected somehow, someway. For a child with autism these types of connections can be extremely confusing and frustrating. Non-verbal cues, body language, social-reciprocity do not come naturally. So this internal need for connection gets fulfilled in other ways, ways I am only beginning to understand.
I find myself watching my son with his favorite toys or treasures. He communicates with me by scripting his favorite movie lines. Each movie line is unique and is expressed with emotion. Because I now speak and understand his language, I easily translate his scripts. This lets me know when he is excited, joyful, scared, sad, and angry. I realize that our connection is biggest when I am in his world speaking his language. In those moments I am immersed in this beautiful and unique interaction with my child. Back and forth, eye contact, and socializing. It reminds me of one of my favorite quotes, Sometimes the heart sees what is invisible to the eye. (author unkown)
As a mother, I love my child unconditionally as long as he is content and fulfilled in his own right. And yet, even “fulfilled” needs to be redefined when you’re parenting a child with autism. I have to understand as a parent that my expectations need to adjust and change as he grows, develops, and matures.
I have found a way to handle the grieving of what may never be and instead see and enjoy what is happening day to day. I’m exploring Holland, immersing myself in the sites, and letting go of Italy. And while I’m here, it’s my mission to enjoy the hurdles and accomplishments no matter how big or small and appreciate how my son has managed to navigate this complex world and be happy.