I have never done this before. I am usually praising the progress of my daughter and hopeful of the future, but if I did not share the other side it would not show the true side of a mothers of autism. There are times when I see Maddux's progress but see how far she still has to go. I am hopeful that she will be able to live alone but not positive. I am okay with not knowing, I just want her to live alone, drive a car, get married, have babies and just be her without someone else. These are the things that frustrate me:
why does the english language have to be sooooo confusing? why does "i" come before "e" except after "c".
why can't "o" just say its name. Not if 2 vowels are walking the first one does the talking and it is always long! Try explaining that one!
why can't there be one way to say something. Not have 12 statements that mean the exact same thing? hungry, starving, famished.. not sure on the spelling of that one.. hot, smouldering, spicy, light your tongue on fire... No Maddux your tongue will not catch on fire.. what is fire? why is it hot, like spicy or hot like burn. Like catch a ball? How do you explain catch on fire to Maddux....... SEE WHAT I MEAN!? There are no books on this. It is just language and Maddux struggles with understanding this.
why is it that a typical kids can understand that you start with pancake batter in a bowl made from mix water and eggs and that you make the stove hot and then it creates a pancake. For Maddux the start to finish must be taught. rules, 1.2.3, this is why this and sometimes it means that. Why do you mix? What is a spatula? Why is the stove hot...hot like spicy or hot like burn? It is a cycle that feels like it never ends.
Do not even get me started on word problems.I know how far Maddux has come and how many things she has been taught and the poor child has to remember so many things just to function everyday. I can not even imagine what goes on in her head when she gets dressed in the morning. Arms first, tag back, over head, pull down, is the straight, is it backwards, now the pants, tag on legs, one leg in other leg in, now stand, pull up, mom zip and button.
I just sometimes want her.... her without the teaching.... her imagination...her stick figure person without 5 fingers bc she does want her stick figure to have five fingers. And no hair bc she does not like hair today. Use dull colors if you want. No need to bright colors today. Because today Maddux does not want to.
This is my struggle for today. Tomorrow I will still feel the same but she will smile and I will be fine. It is late, I had a bad day and I just wanted to share the other side. I want this blog to be real and to not only show her progression but also our struggles. Thanks goodness she is the light of our days which makes all of this so bareable. Most people who see Maddux here and there will not understand this bc she seems so normal but when you look beyond her playing hide a seek and see the things she must remember to function it will show you a different side to this very strong girl.
You know I can not end this post without a picture of our Maddux!
all of the grandkids
