In a book I recently reviewed about faith and specials needs, I was pleasantly surprised to read about a Muslim who helped the author and her family. I believe I commented about this in the previous post when I reviewed the book. While I am a Christian, and this story is told from the perspective of a Christian, I was happy to see that the book tells of an angel sent to the family in Muslim form. We too have had such a Muslim presence in our lives.
A family who knew little of our situation made a lovely gesture to us by spending time with Sophia. I often worry that I am not always able to attend to Sophia as I wish due to the constant doctor and therapy appointments, and that she is lacking the attention she deserves. I had always assumed that it would be my family who would come to her rescue, but things just don't always work out the way you expect them to. This family recognized that I was busy, with what? They didn't know at first.
They have a daughter in Sophia's class. They get Sophia off the bus for me, feed her, and keep her occupied. This one day every couple of weeks offering has meant the world to me. At first I was nervous, they did not know me, they did not understand what we were going through. I picked up Sophia after an initial playdate and felt the need to explain why I appeared to be always on the go and was unable to reciprocate. The mother insisted there was no need for explanation, she could see I needed help, and she was glad for a friend for her own daughter. What a lesson I learned that day.
I told her of Zach's diagnosis anyway. Then this gracious lady told me that her husband was a neurologist and to use him as a resource if I wished. When I think about this family, I often think of the lack of judgment we faced: they never asked what was going on, they just offered to help. They are a perfect mix of compassion and humility.
Now this woman was not perfect, she actually made comments to me that "he looked fine" and that he was like a cousin's son who was just a late bloomer. I knew she didn't intend any ill will when she made these comments. I let them pass.
One day, when I went to pick up Sophia after Zach's therapy, she invited us in. There sat her husband. She made me a plate of lovely Egyptian food, and her husband and I, sat eating our meal, discussing Zach and autism. Meanwhile she attended to Zach in the adjacent room, listening to our conversation.
His specialty is stroke care, so he could not offer specific medical opinions, but he gave us an opinion on sticking with it and keeping Zach engaged. He had a fellowship in Pittsburgh, where they have a terrific children's hospital and was able to see a little bit about autism care. One other interesting note he offered me was that the neurologist we went to see, prestigious as her credentials and background is, was not a pediatric neurologist. This certainly made me view her advice and opinions differently. (It also irked me that my pediatrician sent us to someone who did not specialize in pediatrics, lets alone autism.) Two things stand out from our visits to her: 1) her comment that Zach's brainwaves (as recorded in his two EEGs) were "mature", that of a child 2 or 3 years older, and that is indicative of a high IQ. 2) The other comment, was not to pursue any intense intervention with him, that he was likely a weird little math genius. I noticed that none of this made it's way into the official report. I often think about recording my visits to the various doctors we see - just to capture things I think no one would believe when I write them.
A few weeks later, this mother approached me after swim lessons, and once again offered to take Sophia, and added that she would take Zach too, so that I could have some time to myself. She went on to say that she knew she didn't understand all that we were going through, but to count on her if we needed her.
Our experience has taught me so much. Unfortunately, some of it, a self awareness that I was not the most understanding person myself. I am shameful of my past pretense of compassion and sympathy.
This woman also taught me much about myself and who I would like to be. Much like me, she is an educated SAHM (stay at home Mom) . This woman has no complaints about her nomadic lifestyle (just part of being a doctor's wife she says) and lack of career, nor of the type of work she does (cooking, cleaning, tending to children). Sometimes this SAHM thing does erode a little bit of my sense of self - so much of my identity was weighted upon my career. I have this idea of the person I want to be; I value being useful, respected, and appreciated very much. My career provided me with value for these things. I will not be given paychecks or awards for my work. When I am asked, as I frequently am, what I do for a living, I will say SAHM, and see that the doctors and other professionals do not take me as seriously as when I was a career gal with a masters degree. I am not sure if I will ever even get that appreciation since I am really working for myself, and have to learn to appreciate myself! I can still pursue my values, and now with a sense of humility, since not many people aspire to be in my shoes.
Zach's diagnosis has come with a plethora of life experiences for us that go beyond the autism itself. I am fascinated by the variations of people; that my expectations of people have been both unmet, leaving me disappointed and hurt, and surpassed, where I am amazed at the generosity and thoughtfulness of strangers.
This family has meant a lot to me, and unfortunately given me sad news that they will be moving soon, the doctor is pursuing his next fellowship, likely in South Carolina. But I am grateful for their presence, albeit short, in our lives.
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