Wednesday, September 7, 2011

The hardest thing!

Besides the loud fits from frustration, self affliction of pain and the fact we can't go out in public without fear of a meltdown do you know what the hardest thing about having a blind autistic 6 year old is? BIRTHDAY AND CHRISTMAS SHOPPING! Not only do we have to contend with the fact that she is positively 100 percent blind to no end but we have to deal with the sensory issues of Autism as well. We can't buy her normal toys, they have to make noise or be textured in some way. But they can't be too loud and they can't be too much of a certain texture. We can't just buy something we "think" she might like, we have to buy something we KNOW she WILL like. Not liking something could end in said item being tossed across the room followed by a fall to the floor screaming fit if the texture upsets her sensitive touch or if the noise level was annoyingly loud to her. What is loud to her, is probably not loud at all to us and vice versa. With a child like Miriam there is no end to the chaos that ensues when out shopping. As her mother I literally go through moods. I start off with dread, followed by a renewed sense of assurance as I find a single item and end in tears because that single item is usually the only item I find. I feel like a bad mother, that I am not trying hard enough and at the same time I am angry for my child because I feel like she has gotten a totally bum deal. Most of the time I don't feel that way at all, just two times a year. I want her to be able to enjoy things like Barbie Dolls, Dora, Strawberry Shortcake and an easy bake oven. Before I became the mother of a blind child I always told my self that I would never raise commercialized children. I would never give into the branded toys and clothes but now I see the joy in those things. I see what something as simple as a Dora doll does for my other girls because I see how little it does for Miriam. I would give ANYTHING for her to say "I want a Sponge bob toy for my birthday!" because not only would she be easier to shop for but because I could see the pleasure on her face when she got it. Almost 7 birthdays and not once has my baby gotten excited about a present, not once has she even gotten excited to get one!

And before anyone tells me , I KNOW there are special stores out there to buy toys for blind children, places to buy toys for autistic children as well but we cannot afford to pay 100 bucks for a rag doll or 60 bucks for wooden blocks. And sometimes we don't have the finances in advance to hunt for hours on end online to have it here in time for her birthday. Christmas is a little bit easier because we do turn to online resources but it is still hard. Not only are most of the items we get expensive but she can't use many of the items for blind people, braille for instance is of no interest to her and as hard as it is for this mom to admit she will probably never know how to read it because the Autism will keep her from it. Autism was a very tough pill to swallow. I was the first person in the school yelling at her VI telling her my baby was going to grow out of her behavior just as many children with Septo Optic Dysplasia do . She looked at me like I was an idiot, undermining me the whole way but I stuck to my guns. I am not ashamed to admit that I was wrong so despite some of my families denial I shop for gifts to appease her autistic side as well as her blind side. Miriam is not a little bit autistic, she is severely autistic and that makes it even harder.

With all that said, this year I bought Miriam two sets of metal spoons in various sizes and a metal cake pan. Will she think I am insane, no, she will think it's the best gift on the face of the earth. She already sneaks spoons into her room and would walk around the house all day with one if I let her. Spoons and die cast meal cars are the two things Miriam loves best these days. The pan was something I went out on a limb on but I have no doubt that pan will be better than any old Barbie doll in her eyes. At the end of the day, after all is said and done, after I have cried my tears for my daughter she will end up showing me that in life it is the little things that truly matter. People have been saying it for years , the person who said it first must have had a disabled child because before I had Miriam, I NEVER understood exactly what that saying could mean.

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