I was asked recently why I am trying so desperately to overcome autism. It’s a valid question and it made me think about the challenge of writing about one’s child in a way that honestly captures that child with all their complexities. A week or so ago I wrote in my post entitled A Cure – “Emma cannot function in our world, she is not mainstreamed, she cannot take a shower, wash her hair and dry herself off without support. We are not discussing nuances here. We are talking about a child who is more than “quirky”. My husband, Richard and I love quirky. Quirky is GREAT! We’ll take quirky. But that’s not what Emma is.”
To me, that summed up why we continue to search, why we continue to try various things, but it does not adequately describe Emma. Emma cannot function in our world without hands on support. We cannot have a conversation with her or ask her questions. I am still trying to capture Emma on video and post some clips on here, but haven’t had the time to do that yet. The question I began this post with, made me realize that for someone reading this blog they cannot know her through my writing. Perhaps one gets a sense of her, but there’s too much left out, too much I don’t think to mention, the cadence and inflections of her speech, the words, which I can understand, but which may not be understood by someone else. I try to give an accurate portrait of her, but in the end, it is just that, an interpretation and not representative of the whole.
When we first received Emma’s diagnosis I was determined to find a “cure”. I felt sure that I would find one too. (Hubris? Arrogance? Ignorance? Stupidity? Denial? All of the above?)
After those first few years I realized I might not find a cure for what ailed Emma. And after another few years and three trips to Central America for stem cell treatments under our belt, a “cure” seemed more and more elusive. I have come to accept that. Perhaps more importantly, I am less focused on the miracle of a cure and more focused on pushing Emma to expand her world. There’s a balance we have tried to achieve with Emma. We try to follow her lead whenever possible, but we also encourage her to stretch and do things beyond her comfort zone. Our most recent attempts to expand her diet is a case in point, her literacy and math program are another.
Which isn’t to say that I don’t continue to research and do everything in my power to find treatments to help her. I am convinced Emma’s digestive issues are exacerbated by her environment – the foods she ingests, the air she breathes, the water she drinks. This Friday I am taking Emma to a doctor who has worked with hundreds of children on the spectrum. He and I spoke on the phone yesterday for over an hour, going over her history, her GI issues (inflammations and ulcerations), chronic constipation, recurring strep throat, porous teeth, cracked heels and limited diet. While a few years ago, I would have eagerly anticipated this appointment with the same degree of excitement the devoted view a visit from the Pope, I no longer do. I have come to see all of these people, no matter what letters may follow their name, with tempered interest.
Last week Emma’s school bus matron told us Emma refused to buckle her seat belt and when the bus matron tried to help her, Emma kicked her hard in the chest. We immediately went over with Emma the behavior we expected from her. We rehearsed buckling her seat belt and made sure she had her ipod and ear buds with her so she could amuse herself once she was seated. We went over the importance of not hurting another person. We tried to consider what sort of support she might need to help her control herself. We are lucky in that Emma seems to have understood and has not struck nor tried to get up from her seat while on the bus since.
As we waited for her bus this morning, I coached Emma, “Emma, it’s nice to say good morning to people. She’s a nice lady and saying – Good Morning – will make her smile.
When Emma boarded the bus this morning she said, “Good morning, nice lady.”
The bus matron beamed.
There are many people with an autism diagnosis who are on the “mild” end of the spectrum or fall in the “gifted” category of Aspergers or are considered “high functioning”. These children are often mainstreamed or learning at grade level or above. And while they have tremendous hurdles, often requiring support into their adult lives, they occupy a different level of hurdles from those who, like Emma are moderately autistic.
I had a friend whose child was unable to walk or even lift his head. He, too, was diagnosed with autism, though severely so. That child faced developmental and physical problems far beyond anything Emma has had to deal with. For me to compare the two would have been ludicrous. At this point my goal is to get Emma to a higher level on the spectrum.
For more on Emma’s journey through a childhood of autism, go to: www.EmmasHopeBook.com
I think maybe this is what most parents or carers of children with autism aspire to. Not to extinguish quirks and unique personality traits. Rather to help our children to function in this world, to cope to survive, to find happiness. It is not as simple as just accepting someone as being unique when they cant go out in public without dropping to the ground and self harming over some issue, or they cant even attend to their own most basic needs, when they become distressed when there is a an unavoidable change in routine, when they cannot even travel safely in a car or bus ( we’ve been there believe me), when they have no way to communicate their needs, or to even tell a parent they are in pain or scared or hungry, when they want to reach out to a firiend but don’t know how and so are left friendless, when they struggle to eat because the food repulses them, struggle to even hold a fork or use a knife. That is not something I will accept for my children. I want more for them than that.As a mother I have had to watch my children cry in pain and be unable to hold them in my arms and give them this most basic of comfort, rather being forced to witness their anguish and left helpless.These are things that need to be changed and worked on. If that is a “cure” bring it on I say.
I hope you don’t mind my posting this on the blog this morning. You just summed everything up so beautifully. It is EXACTLY how we feel too. Thank you so much for writing this. It is beautiful.