I think of myself as pretty determined. Someone who doesn’t take “no” for an answer. A person who doesn’t give up easily. When Emma was diagnosed I thought of “autism” as something to battle, wage a war on. I saw it as something we needed to get rid of, a detrimental condition, which needed to be excised. Emma is not “high-functioning” and while there are many people who reject these delineations of high and low functioning in describing autism, I do not know many parents of children with autism who fall in the moderate to severe category who object. A child who needs support with daily living skills, while also being non-verbal or almost non-verbal has a very different set of issues than a high-functioning child who is mainstreamed and will most likely need support in holding down a job. Both will need support, but one will need a great deal more and may never have the opportunity to live independently. There is a difference.
In the over seven years since I learned of autism and first heard the word applied to my daughter, I find I am slowly letting go of the desire to wage an all out war on Emma’s autism and have been coming around to a slightly different view. A view I hope will prove to be more productive and less stressful, for all of us. Allow me to state the obvious - Emma is a little girl, first and foremost. She is funny, has a great sense of humor, loves music and dancing, loves to perform. Emma feels tremendous anxiety when she doesn’t know how to do something or is asked a question she doesn’t have the words for or is unable to fully grasp the concept of. She tries hard. She makes Herculean attempts to do what is asked of her. She has sensory issues, which I still do not fully know how to help her with. She has internal issues I no longer expect anyone to be able to diagnose. And she is my daughter.
A few years ago she went through a period when she raided my lingerie drawer on a regular basis. Richard and I (and sometimes guests) would be sitting in the living room when all of a sudden Emma would burst forth, donning a bra and pair of my underwear, but otherwise naked. The bra haphazardly flung around her shoulders, the cups puckered, the underwear sagged and falling off, she gripped a corner in one hand to ensure they didn’t completely abandon her. The first time she did this, Richard began laughing, while our guest, I think it may have been an electrician who was fixing a blown lighting fixture stared in stunned silence from his perch on a ladder, while I hustled her back into our bedroom, out of view. The second time she appeared, wearing the same combination – never any of the more colorful and attractive lacy lingerie I happen to own, always the same set of sensible, no-nonsense skin-toned bra and underwear – I was able to laugh with Richard, before telling her to go put everything back. Her raid-mommy’s-lingerie-drawer episodes were interspersed with raiding my shoes, thankfully never at the same time, it was one or the other, for which I am grateful. Her favored pair of shoes was a pair of red suede pumps, which she would clomp around in. During these forays into my things, Richard would say things like – “She’s mommy’s little girl!” or “She’s such a girl!”
That I love her, goes without saying. She is my daughter, Emma. Who happens to have autism. The autism piece is complicated, the beautiful little girl/daughter piece is not. I used to view Emma’s autism as something separate from her. I used to think of it as something, like a tumor that needed to be removed. I am coming around to having a less draconian point of view. I am beginning to have some acceptance around it. I find myself thinking less about ridding her of it and more about helping her be all that she can be. Waging war has been exhausting. Maybe, in the end, it all comes down to nothing more than semantics, but I am tired of battling something that does not need to completely define my daughter. I am lucky, Emma is verbal, Emma has shown that she can and will learn to read, write, communicate more appropriately, focus, and is able to understand abstract concepts such as time, names, part vs whole, same vs different, etc. It just takes a great deal more practice and time.
For more on Emma’s journey through a childhood of autism, go to: Emma’s Hope Book