A Little Late

I know that this is late because we are about to celebrate Thanksgiving next week but it is important to share.

Alexis had a Halloween party at school. I found out the day before and freaked because I hadn't finished her costume yet (okay... started it yet). So right after she went to bed I went to work. She wanted to be Mickey Mouse because we are going to his house for Christmas and it is always on her mind. I made her red shorts using a pair of other shorts as a pattern, I had bought white gloves, and then I made her ears out of stiff felt. It was homemade with love and she loved it and was very excited to wear it.

The next day I put her into a black turtle neck and black leggings so all she would have to do was put on the accessories and shorts. However, when I got to the school she had had an accident and was put in her back up clothes. Oh well. Turns out though we were the only ones in costume. What can I say the Kinghorn's like to have fun.

Always Changing, Always Challenging

Taking care of Alexis has been very hard lately. She has been having fits worse than her two year old sister. It doesn't help that she is 110 pounds and dead weight when she goes to the floor.

I have been struggling lately to connect with her.It seems as though she has lost her hearing. I did take her into the doctor's and she has two ear infections right now. Before that, however, I was already feeling unheard. She has had selective hearing for awhile now but this has gone over and above that. I will stand right in front of her and yell at the top of my lungs (because it is the third or fourth time trying to get a response)and she will just stare at me.

Maybe I wouldn't be so upset if she had always done this but she hasn't. Once upon a time I was able to have a conversation with her or was able to redirect her. For now those days are over. 

I pray every day that I will be able to reconnect with my daughter, that I will be able to parent with more Christ-like abilities, and that we will have peace in our home.

It was a lot easier to have just Alexis and to focus on just Alexis. I would not change having more children for anything. I get to know what it is like to have "normal" kids and to watch them discover life in ways Alexis never would have. Alexis also gets to have the opportunity to learn and grow as a person. Even though she is special needs, she still needs to be stretched as a person. Someone who learns how to be kind, loving and someone who will learn how to share.

In our faith we believe in a second ressurection when Christ comes to the Earth again and at that time we will all have perfect bodies. I think about that a lot. Will Alexis know who I am? Will I know who she is or recognize her? Will she be grateful for the struggles I had? Will she thank me for always pushing her in her challenged state? Will she be disapointed that I was angry with her sometimes? Would she have wanted me to do more?


It is beyond me now. I hope that all of this is good for something. I hope Alexis grows up a little bit more. I hope we survive the teenage years. I hope she knows that I love her.

School Year 2010-2011

Alexis started school this year with great excitement. That has turned into our normal morning routine of her not wanting to get up and fighting me when I bathe her. She has had a hard time adjusting to her new school and teacher. This year she is in the middle school which terrifies me. We have been in school for almost a month now and it seems that the bus is finally on a regular schedule. 

 

Cast Off

Wednesday morning Alexis got her cast taken off. It was traumatic for all the kids in the room. I had to hold her tightly so that the doctor could saw it off. She screamed and when I looked over at my other children they were screaming too. After wards Alexis' brother had a look of concern for a long time. After the x-ray, we found out that Alexis is a quick healer and only needs to wear a splint for another three weeks. No more horse riding until then.

Bathing has been made a lot easier. Eating isn't so messy. She just seems to still not want to use her arm. We will have to work on that.

Support

Alexis had her second outing with her worker (I don't remember the official title). She took Alexis out to the Humane Society. While there they worked on  Alexis not talking to strangers and not touching other people. Alexis had a good time. She bugged me all morning until it was time for her to go.

Last week was the first visit and the worker stayed in our home and played with Alexis so that they could get comfortable with each other. I was able to get the dishes done while they worked. I asked the worker what I am supposed to do during their time together and she told me whatever I wanted to do.

I am so thankful for all of the support that I have been given since Alexis was discovered to be Special Needs.

Last Day of School

Alexis had her last day of school last Thursday. Grandma Val picked her up from school and then Ellie, Mikey and I met them at Cici's for lunch to celebrate the day. Cici's is Lexi's favorite place to eat.

Sad News

Alexis broke her wrist over a week ago. She was at her horse riding therapy and fell of when the horse got spooked. She broke the rim of her helmet (glad that was on). She got a red cast that went up to her elbow. This last Friday we get a call from her teacher. Alexis had taken her arm out of the cast. Just pulled it off. That is not an easy thing to do.

So we took her in and she got a new cast that goes over her elbow. It is green with a pink candy stripe. She is having a hard time eating with utensils and bathing is a painful process for all (me) involved.

The summer is starting to be quite the adventure. School ends on Thursday. No one is really excited about that except for the teachers. Alexis loves going to school and I love having her go (I get peace during the day). I am going to have to work extra hard to not let her get bored so that she doesn't use torturing her siblings as entertainment.

I Will Share

A while ago I spent the whole month teaching the  lesson, "I Will Share" from the manual

"Behold Your Little Ones". It worked for a little while but has gotten worse since then. 

Alexis will take a toy from her younger siblings and tell them, "I will share." Of course her sharing is one sided. Today was really bad. Alexis did not want her sister to have any toys. I can only take screaming for so long from anyone.

I know that they love each other and have good times. It just feels that lately that is far and in between. 

 

I got a note from school saying that Alexis' behaviors were a yellow for the day because she was eating her classmates' food. I don't know what to tell her teachers because I struggle with that one too. Apparently it is more one sided "I will share."

Venting

Sometimes I wish Alexis did not have sensory issues. 

Yesterday was a very hot day, well into the 90's. Our house does not have central air and the only way to be comfortable is to have our window units running. Alexis hates fans. Her room is the hottest so that is where we put the unit. She would not go to sleep. Always standing in her doorway saying that she had to go to the bathroom or that her back hurt or I want it off. She is not a quiet person. She has two volumes, loud and louder. After awhile it grates on me. So at midnight I finally turned it off. It was a hot night. Today was not any better. 

I moved Alexis' bed across the room so she would not be near the window unit. I put her to bed at 8:30pm and her protests began before she even went into her room. I don't know why but today it really tested me and made me angry. I really hate that Alexis is so sensory sensitive. Sometimes I don't realize how much we do to accommodate her until something like this happens.

She shares a room with her sister. I just want both of them to sleep well. Anyways, I was so frustrated I had to leave the house and walk. I wasn't that far from my house when I heard my neighbor yelling at her kids to go to bed. It was a comfort to me to know that I am not the only one with struggles. 

I don't know if being Alexis' mom is hard because it's all I know. I am sure I would have other battles if she weren't special needs.

 

Special Olympics - Track & Field 2010

 

This last Friday was Special Olympics: Track & Field. It was scheduled for the previous Friday but the weather report was bad so they rescheduled and the day was so beautiful. It was breezy and comfortable.

Alexis competed in two events this year: the fifty meter dash and the softball toss. I was a little disappointed that she was in only two events. Last year she was in at least three. She gets so excited to race.

 

She didn't get to participate until after lunch. Waiting was hard for her. She was ready to go. Her first event was the Softball Toss. This cracks me up. It never goes very far. I don't even know if she likes doing this one. I do know is that she likes to have everyone clap for her. Who doesn't? It feels good to be supported.

 

Alexis got fourth place. Lucky for her she really doesn't care. She just aims for certain color. She prefers the yellow ones (third place). I love her!

  

    

Alexis' last event was the Fifty Meter dash. We practice at home by going for walks and we cheer her on. I always get emotional when she races. There is just so much joy at these events. Alexis got a blue ribbon for this one (first place) only because she didn't race anyone else. Ellie wanted to run too. It was cute.

 

Alexis is number one!

Teeth

I had to take Alexis to the dentist today. On Monday she chipped her tooth. No one knows for sure how it happened. The dentist said it was just a little bit of the enamel and that she should be fine. However, he referred us to another dentist in East Lansing that specializes in children with special needs just in case. So well will see how things go there. I did ask if Alexis would benefit from braces and he said no. He said that she would have straight teeth but they would be rotted by the time she was done. Too bad.

AHHHHHHH!!!!!

I screamed at Alexis today. I am just so frustrated with her. She is compelled to eat. I used to be able to keep her eating under control by having the fridge locked and then I gated off the kitchen. Because our family is too big to fit around the kitchen table, we have moved to the dinning room table. I have a 23 month old who doesn't eat enough so I set her plate out on the dinning room table to let her eat when she feels like it. However, Alexis zones in on it and eats the food before her sister can finish her meal. Ugh!!! If Alexis had it her way she would eat and eat and eat. I just don't want her to be so over weight she is unable to do anything. She already believes she is limited in some ways.

I don't know how to stop her...

Special Olympics

Alexis participated in the freestyle assisted with flotation and the backstroke assisted with flotation. She got third in both races. We are so proud of her. When it comes to swimming she doesn't go very fast because she doesn't want to get out of the pool.
Showering after the race. She hates showers. I made her smile for me.
After wards with part of her cheer team. Grandma Burton, Grandpa Burton, Daddy and Emily had left by the time we took our picture.
The proud winner. She always says, "I win! I win!" I love Special Olympics. I get emotional every time.

Glasses

We took Alexis to her annual eye exam. We have been seeing Dr. Archer for 10 years I think. For a few years we didn't see him. He performed her two eye surgeries and diagnosed her Brown Syndrome.

She did so well. When she was younger, I had to have her sit in my lap and she did not cooperate very well. So I was amazed at her behavior this time. I guess she is growing up.

Protecting her dilated pupils.
Ta Da! New glasses. She doesn't keep them on very well. We will have to get used to them.

Hygiene

I wish there was a way to help Alexis learn better hygiene. Every morning I get her up and right away she goes to the bathroom and gets into the tub. I wash her hair and then her body. I do this everyday that she is at home (she goes to her dad's every other weekend). Yet every day she hollers and cries about how it hurts when I wash her. She says "ow my boobies!" which is inappropriate. I ask her if I am touching that and she says "no". I then ask her what I am cleaning and then she says "ow my (whatever I am cleaning)!" It is so frustrating.

Then a few hours later she has body odor again. In the beginning it wasn't so bad and she has only been potty trained for two years, but she is getting older fast and other people are noticing. I have talked to a mother of an older girl who also has 1p36 and she told me that body odor will always be a problem. sigh

Speech Wednesday

I have been scouring the internet and stores clearance sections looking for Montessori projects for Alexis and her siblings. While I was out after Christmas, I found plastic colored jems. I thought they would be great for sorting. So this is how I set up the tray. I recycled yogurt cups for the dishes.


Alexis knew exactly what to do when I put the tray in front of her. Using the tongs is very challenging for her. Manipulating utinsels is hard but I make her do it anyway.


When I am not looking she stops using the tongs and just uses her hands. It gets the job done sooner. I stop her and make her start over trying to use the tongs.


After a few more attempts,I just let her use her hands. She will sort them for awhile and then she gets bored. I handed her the bag to put the gems away and she plays with the bag for awhile. Putting the gems in and then pouring them out. Whatever makes her happy and out of her sister's hair.


I made these writing pages for Alexis. I laminated the pages so that she can use them over and over again. They have snowflakes and snowman on them which are some of her favorite things.


I had Alexis work on her speech. These are pages from when we were going to Speech. Alexis has to do work to earn the balls for her favorite toy.


Then she gets to play with them twice and then we do more work to earn them again. This toy was a motivator while Alexis was attending Speech therapy. So when I saw it at Target I had to get it. It was on clearance which was better.


Lexi likes this time of day on Wednesday. I think it is because I am just focusing on her. It is hard to share mom when you've had her all to yourself for most of your life.

Disney World Dreams

On Monday we told Alexis that we are planning on going to Disney World. Wow was she excited! We are planning on going in December for her thirteenth birthday. I am excited to take her. Not only will we be at Cinderella's and Mickey's house but it will be Christmas. That is Lexi's favorite holiday. Didn't you know everyone puts the lights up for her? Anyways, we made a bank for Family Home Evening.
This is Alexis and her sister putting the money in the bank. This morning Alexis wanted to spend the money to go Disney. I told her we needed to save it for later. I have a feeling she will be talking about it all year. You know how it gets. They get stuck one thought and repeat it over and over and over.

Ouch!!!

Last Wednesday I went into Lexi's room to wake her up for school. When I was getting her baby sister out of her crib, Alexis said her head hurt. I turned around and saw Lexi rubbing her eye. When I got closer I saw that her eye was swollen shut and there was dried blood in her nose. I freaked out! I asked her what happened and she said that she fell out of bed. After I cleaned her up, I saw that she had a black but it wasn't as bad as I had initially thought. Although it was still pretty bad. Lexi is a violent sleeper sometimes and she has fallen out of bed before but was never hurt. Poor Alexis.

Misleading

Lexi's ailments can be misleading. She does not let us know when she does not feel right. She came home from school yesterday and she had really bad body odor. Her teacher sent a note home saying that Alexis had gone to the bathroom a lot. Not knowing if there was something wrong, I made an appointment at the doctor's. She did not have an infection. I think she is using the bathroom to get out of doing what she is supposed to be doing in the classroom. I know she tries to use that at home.

Eating, Eating, Eating

One thing that Alexis does that drives me crazy is her eating and food focus. She will say that her tummy is full and then go over to her sister's plate and eat off of that. She will then go into the kitchen and eat what ever she can get her fingers on. If I haven't gotten to the dishes right away, she will pick the food off of those dishes. It grosses me out and worries me. We keep a lock on the refrigerator and have the kitchen gated off, but it does not always work.

I am afraid that when she is out on her own she wont be able to control herself. It is almost as if she sees the food she has to eat it. I know that eating is a problem for 1p36 kids but usually it's the lack of eating. Her step father and I have started portion control at meals. We will give her half of the normal portion and then give her "seconds" to complete the portion. She usually gets down from the table after that. This ha s helped so far. I just can't get her to stop piecing off of other plates.