As I packed lunches the other morning I pulled out an old bag of Chinese crunchy noodles to nibble on. You know, the kind you sprinkle into your egg drop soup or eat with some duck sauce while waiting for the rest of your food to cool down. Even cold and a couple days old they were pretty tasty – I was glad that there were no other leftovers in the fridge so I didn’t have to debate the pros and cons of sesame chicken in the morning.
Chinese food is one of my vices. Along with dark chocolate. And red wine. But I digress…
I used to be fat. Not just a little fat, but 5’6″, 245 pounds, size 20 fat. I started gaining weight in college and continued to pack it on straight through my pregnancy with James and beyond, until I was barely recognizable to those who knew me from high school. Eating a box of macaroni and cheese with a Coke was an easy and somewhat regular lunch for me. An entire footlong sub, bag of chips and a Coke was another favorite. And Chinese food then meant an order of General Tso’s, beef lo mein and an egg roll, all for me.
Last week when I was picking James up from school I watched one of his teachers lay into him for talking in line. She looked very frustrated and was scolding him loudly- it seemed as though this wasn’t the first time he was being corrected. James put his head down and started to tear up – he HATES being “in trouble.” I winced, not because he didn’t deserve to be chastised, but because I knew he would dwell on being “in trouble” all afternoon (which he did). I also knew that even though he was breaking a rule, James completely lacks the self-awareness and control necessary to not talk in line if someone was talking to him, and he was paired up with another little boy who I knew to be a chatter box and a tease.
Another parent had apparently seen everything and as I left the school yard sidled up to me and said, “Wow, you’re really patient. No way would I have let another adult yell at my kid like that.” I explained that James had been talking in line, and the parent replied, “Well, doesn’t she know that James is special needs? He really can’t help talking out of turn sometimes.” I agreed, but commented that James was going to have to learn how to follow the rules in the real world if he was ever going to learn any independence, to which she countered, “The world should really have less rigid expectations for special ed kids.” I shrugged and we said our goodbyes.
I get this a lot. Many a well-meaning stranger has approached me while I am correcting James over something – not paying attention, not using manners, walking across the street without looking, picking his nose, forgetting his backpack any number of places – and said, “Aww, he looks so upset, just give him a break.”
My mother and I debate about how much homework is appropriate for James – she feels that he should not have to do much because he has a long day at school, while I feel that he has to attempt the work, tired or not. Not because I care about homework – honestly, homework is a huge time suck and neither of us ever really feel like doing it. But, again, James needs to learn how to play in the real world. His homework is modified and within the realm of his ability. How many typical children don’t want to do their homework?
When James falls, he falls hard. People around us gasp and rush over to help. My reaction? “Get up, James. Hurry up, you’re fine.” I know what the cute little old lady who hustled over is thinking about me at that moment. But if I react with “Oh, no, are you okay?” James is going to burst into tears and dwell on his “injury” for half of the day.
8 years ago I lost 115 pounds – it was through a lot of dieting, exercise and practice – none of it was very pleasant, but boy am I glad I stuck with it. When I showed up at Thanksgiving with my little frozen diet dinner the first year, did people think I was taking it too far? You bet. And in hindsight, maybe I was, but I think it was more that I knew I wasn’t disciplined enough to loosen the reins yet.
I am in the “frozen dinner” stage with James right now. He needs to practice ten times harder than you or I when it comes to learning the rules associated with discipline, school work, exercise, manners. What 11 year old child usually picks the healthy food over the egg roll?
I know that at some point I am going to have to loosen the reins and accept the results of my (and James’s) best efforts. I still have the occasional urge to order General Tso’s chicken or stop into McDonald’s for some quick and easy (and greasy) fatty goodness. But over time it has gotten easier to do what I practiced for so long, and the hard work has truly been worth it. I sincerely believe I will be able to say the same for James, and I hope he will it was worth it too.
Michaela Searfoorce is the never-stay-at-home mother of 3 exceptional children ages 11, 2 and 1 yr old. She and her husband live on the UWS in Manhattan. After finding schools, services and activities for her special needs son the long and hard way, she decided to help connect others with the many available resources in the NYC area. Though her degrees and career have been in music performance and education, she has found a new kind of fulfillment in motherhood and advocating for people with disabilities, especially her son.
James is an amazing 11 year old boy in a 5th grade ICT class on the UWS. His main diagnosis is a rare chromosome defect which has resulted in numerous medical issues, global developmental and physical delays, and labels such as PDD-NOS, Sensory Integration Dysfunction and ADD. Despite multiple surgeries since birth and new challenges every year, James is generally a very happy, affectionate child and brings a smile to the faces of nearly everyone he meets.
You can visit her site at www.TheFoorce.com.