Monday, January 28, 2013

rethinking...

Maddie had her first week of extended therapies...water therapy, speech, etc...it went good...and i was very pleased that I got a total recap and very detailed account of what she did...what we need to work on...and where she is at...it is so real now...real that Maddie is developmentally delayed...yes she is "good" for Maddie...but to be real and honest about Maddie's development is the only way we can improve...if we pretend everything is ok and that Maddie is right on track for a 3 year old...well that does no one any good...yesterday Maddie brought me a book and we read it together...this is the first time she has not tried to read it to me...it is the first time she has initiated book reading...me to her...I went to a training the other day and in there they talked about "good" children's books developmentally appropriate books and not so good books...it dawned on me that Maddie understands 1 to 2 word commands...she gets lost in a sentence...so if I ask her to get her shoes...I say get your shoes please...and she does...if I say get you shoes so we can go bye bye...she is lost and goes straight for the door...or just stands there looking at me...so with reading books to her yesterday I did 1 to 3 word for each page...had her finger direct...so she was interacting and pointing and describing with her finger what I was saying...Maddie continued through the day wanting to read with Chad, me, Max...it was amazing...little things we get excited about around here...she said purple, blue, tree, cow with moo, dog with bark, cat with meow, and some more...those are just new words...let me explain that they are not clear words or sounds...they are a distinctive Maddie speech...I have never heard a child talk like Maddie until I heard another child with Down syndrome speak...and then I knew Maddie was "normal"...I get jealous when I read that other kiddos with Down syndrome are speaking better then Maddie...because I want her to talk clearly...but now I realize that she is doing ok...this weekend I also realized I need to make her come to the store with me...I need to take every possible teachable moment and seize it...I think i am tired just thinking about it...but I now see that it is a must not a maybe sometimes I will...I see that with Maddie I have to make a conscious effort to teach everyday stuff...I have to stop holding her so much because it is easier...I have to teach her to hold my hand in the parking lot...walk not run...and some how I need to teach fear of strangers and dogs...today we went to get Petco to get crickets and I realized again that we did this with Max...we used to call Petco the zoo...and we would spend an hour looking at animals, walking in the store, just learning to be appropriate in the environment...with Maddie I have hid her..and myself...I do not like the stares...it is easy to say just ignore them...but sometimes I can...sometimes i cant...last night in Target 2 women actually came back out of there aisle to watch Maddie playing peek a boo in the clothes with me...Maddie was laughing so loud and big that it was infectious...and these women could not get enough of her...its a compliment of course...but really all I am thinking if I allow Maddie to play this game here what if she thinks its ok to do this at age 12 or 24...I must now reteach how to act in a store...with Max I would not have thought twice about this game...I would have thought it was completely appropriate...with Maddie I worry she will never grow out of it...this is why I have to seize every moment with her...I have had to give Maddie to others to learn to roll over, crawl, walk, now talk, and now I have to give to others to learn how to fit into society...I know it is my job also to teach this...and we do...but I must stay in the moment...I need to just keep in the present...I feel like we are on a roller coaster and I am desperately trying to not fall off...with change comes great growth for me and her!

5 comments:

  1. This is something I have to work on too. Teaching Lucas how to behave properly in a store. He does ok in Daddy's store but everywhere else is a nightmare. It's difficult because Malcolm is the same way and it's hard to handle both boys. I have done the easy route far too often. I've just got to buckle down and do it! Good for you for seizing the teachable moments! Lucky Maddie for having such a great mom.

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  2. Oh behaviors. Yes, that is something you have to tackle head on. I cannot tell you how many times I have been n a store and received the looks...stares...because I discipline...because she has Down syndrome. But, I am starting to see it pay off now. Oh, we still have many more to work on but I write this to tell you there is a huge light at the end of the tunnel. I have always felt all along with Kristen I have to teach everything...and I mean down to the last social detail. But, she is so teachable and it works when you figure it out with them! You are a wonderful mom, and Maddie is doing great because of it.

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  3. Ahhh yes I hear you! Why is it that it seems so important to get it right ALL the time with Owen, maybe because his memory is so darn good that if we stuff up once then it becomes a set piece of behavior? I don't even know if that is true but I think it is the fear that I am living by. Anyway I am so happy that you are getting detailed reports and support I think that is fantastic, amazing, gold!

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  4. I am so glad you share thoughts like this, I can always relate to what you are saying. I am very aware of Russell's behavior at all times when we are out. Sometimes I feel sad and annoyed that I even have to...But the truth is I do. He needs me to help correct his behavior, because I don't want him to act certain ways at 12 or 24, like you said. It is what it is.

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  5. I discipline in public and sometimes I get the "but he's just a baby" comments or stares but the reality is Sutter's not a baby and he needs to act like a big boy in the stores or restaurants. If he reaches out to pull things off the racks I hold his hands on the cart and tell him "we keep our hands to ourselves or I'll hold them there for you", if he screams or is too loud I cover his mouth and tell him he has to have an inside voice. It's hard and sometimes I don't want to deal with it, but it is slowing paying off. Teachable moments are all around us, even ones we never thought we would have to teach! :)

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