I try to get inside Julia’s head sometimes and I find it impossible. I wonder why she can’t sit down and do something (like color an entire coloring page in a simple coloring book) and actually finish it. I understand that she may get bored and that she wants to move on to something else. But I know there are other things going on in her brain that I really will never understand. I think to myself “Finish something, please, just once.” That’s what my just short of 50 year old brain says but then I’m not a 9 year old with hydrocephalus. I don’t say anything and I just hope and try not to be negative or a nag……. Be encouraging and supportive, but it is hard.
It’s difficult for me because I’ve always been focused as long as I can remember. First child of five girls, classic overachiever. Not always successful but there was enough sibling rivalry to try hard and do my best. But then I’m not Julia and she’s not me nor will she ever be. I worry…. I worry more…. I wonder how she’ll grow up and get on – something all mothers do with any child -- with a disability or not.
I’ve tried a bunch of stuff to help Julia with her manual dexterity but I don’t want to turn her off and make her feel inept and a failure. Sewing cards – not a prayer. Needlepoint – forget it. Knitting – we’ll just hope for one day. I just have to let it go and I do. These are things I like and have always liked. It’s not fair to ask her to do any of them if she isn’t at all interested. I really try not to push. Every once in a while, I re-introduce something to see if there is a spark. I don’t want her to hate me nor the things I enjoy doing. Perhaps I let it go too frequently to a fault but you never do know what you are doing is right, do you?
It seems that once Julia’s brain is ready, she may get interested and try. She may not be successful but she gives it a go. The other day, she was sitting on the floor with a box of Polly Pockets. Last summer, I bought these for her because her cousins had them and she seemed mildly interested. She likes colors and fashion and hair-dos and the romance of travel. Polly Pocket goes to Paris and London – oh yes, that sounded like a good thing. But she just couldn’t do it – the dolls and the clothing pieces were so tiny and fidgety. I had to dress them for her. She couldn’t stretch the rubber to make them fit. My goodness, she can’t yet button her buttons or tie her shoes – thank goodness for Velcro.
Last weekend, she sat there on the floor and she actually changed the outfits on the Polly Pockets. I saw her, as I was washing the dishes in the sink. I was so excited I wanted to run over and hug her and congratulate her. But I didn’t. I didn’t say a thing – I just watched, amazed. I didn’t want to make a big deal. I am so very proud of her.
I bought this crazy Wilton Gingerbread House in a Box the other night at a giant craft store because Julia seemed interested. I’ve tried this gingerbread house thing before. It was a disaster. For $8.00, I thought we should have another go and at least I didn’t have to bake anything. When she was in kindergarten, I baked a zillion gingerbread cookies and brought in all the goop and candy and all the kids went crazy decorating and eating. Julia wasn’t the least bit interested. She sat there, not knowing what to do nor how to do it. It broke my heart but the other kids liked it.
The sweets and sugar thing is a tough one for us. Sugar isn’t good for a child with diabetes and cookies and gingerbread houses are full of it. I just keep telling her not to eat it or lick her fingers…. I feel like a broken record. Baking used to be such a fun thing for us – all the flour and the butter and the sugar and the goopiness of it all. But I’m glad she had the dexterity and the actual interest to sit there for at least an hour plopping all the sugary goop and decorations on the pre-baked house. I knew I would have to adjust her insulin at dinner although it could have been a lot worse.
Since there’s not a chance we are going to eat the gingerbread creation, I brought out the glue gun and glued the whole thing together. Much easier than our first attempt with the sugary icing that didn’t set up overnight and fell over the first time we moved it. I highly suggest the glue gun for others struggling with getting these things to stick together. (How do those professional gingerbread house builders do it anyway?)
And I did get a kick out of Julia – After an hour of decorating with the icing, sprinkles, gum drops (boy Mommy, these are disgusting), gum balls and more, she whipped out the Elmer’s glue to finish it all off. Smart kid in her own right. She squeezed it every place she wanted it and plopped down the rest of the decorations. There was a time when she wouldn’t have been able to even squeeze the Elmer’s bottle. She’s making slow progress and I feel so fortunate.
I’m hoping we’re going to get to building little holiday houses with natural materials – like birch bark, pine cones, fungus and sticks. We’ll see how we do with that. Definitely not the allure of the candy in bright colors but at least they don’t taste good. And of course a little metallic glitter could save the day.