Catch Up

I've missed a week. )-: I'll catch up . . .

McKenna actually missed her therapy session last week because she came down with another cold. Right before I was due to leave for Vancouver too. That week leading up to my trip McKenna really started putting two words together! We think she has around 50 words now. Ms. T. explained that is the magic number for kids to start putting two words together. Suddenly McKenna had so many two word combinations within her 50 words that I couldn't keep track. It was so exciting!

She did fine while I was gone. The mornings were the hardest for her. She would wake up and cry and look for me. )-: After that though she went through her days and even nights fairly happily and normally.

McKenna continues to really struggle with articulation with most of her 50 words. Very few of them are intelligible to strangers. I know this will come later. I just continue to be sobered by how far she has to go, how slow it is and how hard she has to work.

She had two sessions this week to make up for last week. Tuesday she did well and worked pretty hard. At one point though she was really visibly groping with her mouth moving and twisting and no sound coming out. Her problems are most obvious when she is excited, motivated and trying her hardest. That is so hard for me to see. A lot of the time (like today) in therapy- she refuses to speak, by pursing her lips if she has to work. If she's not excited about the game or toy we are using for incentive she refuses to play. Today we were making Santa faces. Cole got his plate, eyes, cotton balls etc... McKenna only performed for the eyes, so she sat and forlornly watched Cole put his Santa together. Her shoulders were slumped, she would reach for everything, but as soon as Ms. T. made it clear she had to say something for it she just sat passively.

I was really frustrated and discouraged today. She was even refusing to say stuff I know and even more important "she knows" she can say. We worked for 20 minutes to get her to say something she can already say. That is discouraging. Ms. T. feels that the novelty and fun of therapy is wearing off and now we are also dealing with some attitude. She does *NOT* want to frustrate McKenna. She wants this to be as fun and rewarding as possible. She works so hard to build McKenna up and encourage her. However if she asks McKenna to do something and she doesn't do it her policy is to follow through in making McKenna obey that request in some way. The end could be that she resorts to asking McKenna for only a sign and then if she won't do that then she says,"ok- then I'll help you." Then she takes McKenna's hands and forces the sign. She does not treat McKenna as if she is in trouble she just calmly and patiently follows through. She asked me if I was "cool" with this and I wholeheartedly am! Ms. T. really wants to find the right balance for McKenna in how hard we make her work. So do I!

It's just hard because she is 2 and a half. Your 2 year old isn't supposed to have to work like this. In my mind her days should be full of fun, growing and play with a bit of clean up. It's a hard pill to swallow to know that she is going to be working so hard for years possibly- just to speak intelligibly.

Another thing that is hard lately is McKenna does this thing where she gets stuck, like a broken record- on something she is saying. Then she says it loudly, over and over and over. It drives Cole INSANE! He gets so agitated and upset. He starts yelling at her to be quiet and he starts crying and asking why does she just keep saying that? It's especially bad when she's directing it at him. The other day she yelled, "NO MIEE" (no mine) at him for 15 minutes. After the first 2 times he had already given her what she wanted and she just kept standing there yelling it over and over. I tried to distract her, but that didn't work. I do not feel like I can discipline her as it is totally neurological. She is literally programing her brain to yell "no mine" and I don't want to stop that. I ended up having to remove Cole from the situation as much as possible. I want him to learn to ignore her when she does that.

It happens every day. As Cole screams and cries for her to stop, she just stands there looking a bit upset saying "whatever" over and over.

Any ideas about how to deal with this? I mean she could be saying "yai pees" (yes please) over and over and it still makes Cole crazy and upset. I have done my best to explain to him McKenna has issues, McKenna cannot talk like you and me, McKenna is trying to fix her brain, McKenna is practicing her speech... The fact remains Cole can't handle it. This is a problem.

We are starting to use more signs in therapy. Children's Mercy recommended that and also some of you who are following this blog. I feel it is a very good idea to pursue that more. The signs do seem to act as a trigger for McKenna's brain. They often seem to help her get the word out and they help with articulation.

We are going to pursue Sensory Integration Therapy for McKenna. It snowed for the first time this season last week. I took her out in it and she cried, whined, moaned and sometimes screamed the entire time she was out there. She couldn't stand to walk in it, touch it, have it on her boots, gloves, coat, snow pants... It was pretty dramatic. We stayed out for over 30 minutes and it never got better. I even let Cole stay out after we went back in and she was perfectly content to watch him and not join him! That's crazy . . .

I wrote a letter about the kids for everyone helping with them while I was away. I'll post some sections about McKenna next time. This post has gotten too long.

Love,
Amber

Isn't It Ironic

Dave and I were talking yesterday about how ironic McKenna's diagnosis is. Anyone that knows me knows I'm a talker . . . a big talker . . . I can talk and talk and talk. I love to communicate, it's one of my strengths, it's a huge security for me. I also love to listen to other people talk. I love people and I love connecting. To communicate and listen well brings you success in life.

For a brief second here and there I can appreciate the irony and have a little humor about the fact that I could have a daughter who can't talk! What??

So in the middle of our conversation Dave knocked me in the arm and said, "yeah- sometimes I wish YOU had verbal dyspraxia!" I hit him and laughed.

My laugh, however is only skin deep. The corners of my mouth turn up, sound comes out, but my eyes are not laughing. My heart is not laughing.

I cannot imagine a world where simply speaking is difficult. I guess I put a lot of my security in that power. I sense that a whole new world is about to open up for me. A world in which McKenna is supposed to be the recipient of growth, but hopefully I will be a better person for this. I know in my head that there is so much more to communication then words, but my heart has not learned this lesson yet.

I am looking forward to this journey . . . I am.

Love,
Amber