Thursday, December 27, 2012

Simple Things

We survived another Christmas here! Christmas is all about celebrating the birth of Jesus but boy it's a busy couple of days here. There were a few things that happened this year that were really neat. Jaycee actually opened all her presents. Her fine motor skills really make it difficult for her to rip the paper open sometimes. I tried to start every present with a rip for her to follow. Almost every year, I end up begging her and assisting her to finish opening her presents. Not this year, she did great!  She opened every present. It was such a good feeling. It's a simple thing to see her do. She was just like a regular kid shredding paper.

Not only that, she was really excited about some of the things she got. She would babble and hold some things up investigating them. She showed an interest in what she was getting. This isn't typical. Always before, if she got the paper off, she chucked the toy while I tried to "sell" it to her. It was great to see her happy and interested in this part of Christmas. If you have a child who wasn't interested, you would totally appreciate these milestones I'm writing about.

The best thing was that Christmas night brought in a blizzard of snow. Winters are always rough on Jaycee's breathing but she's healthy right now. So she got to actually go outside for about 10 minutes and play in the snow like a regular kid. I didn't have to worry about her wheezing. It was just fun. Normally, we usually end up bring snow inside the house for Jaycee and not allow her in the cold air. But the snow came at a great time for health. She loved it. Dad was tired from pulling her up and down the driveway.

These simple things are great! They are marks of progress. Here's to more sled rides.

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Thursday, December 20, 2012

Preparing for Christmas

My three year old is so excited for Christmas. He has a long list of toys he wants. Most of them involve items that go on a railway. He can't wait to shred the wrapping paper on his presents to see what hidden treasure is beneath.

Jaycee is different. Call it contentment or indifference. She rarely gets excited about a present. In fact, by the end of Christmas I'll probably be opening her presents because she's lost interest. The present aspect of Christmas has always been a difficult time for her and me. She's never really been into much of anything besides music and movies. It makes it difficult for me to find that "special toy" that people talk about. Ya know, that toy that the parent is so excited to buy for their child because their child has talked and dreamed of it.

Over the years I have struggled with presents for Jaycee. For the first 4 years of her life, most of Jaycee's presents were therapy or educationally related. I chose toys that would help her fine motor skills. I got her signing movies. In general, I got things that I could use to help Jaycee develop skills. She doesn't typically play with toys so I didn't see the point in buying "fun" things with no purpose. Those type of toys seemed to sit around and collect dust. 

Last year, I didn't go totally educational but I did get many items that she might like that would help her (like a trampoline). I have been very proud of myself this year. For the first time, I got Jaycee only fun toys with no ulterior motive. There's no educational value to an oinking pig or a singing Barney doll. It's a good step for me to let go of getting her things based upon advancing her development. There is a small window of time left to get all the fun toys in before she's too old for them.

Next week, we will see if anything I got her will actually be used or enjoyed.
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Thursday, December 13, 2012

Getting outside myself

It all started almost a year ago. I was faced with a decision. I felt God pulling me to start helping with the children's ministry at church. I wouldn't have a vital role and any huge responsibilities but I would have to commit to serving every Wednesday night along with some other women.

I thought of a million reasons why I shouldn't volunteer. Last year at that time, Jaycee was just coming out of some bad health issues and I didn't want to sign up and then miss all the time. Jaycee wears a bi-pap for her sleep apnea so every Wednesday I'd be battling that nightly issue later than normal. I sometimes get stressed taking the two kids out by myself (my hubby works long hours) because I never know when Jaycee might run off. I work on Wednesdays. I already feel tired and a little worn out every week as it is, do I have anything else left to give?

Despite all good sense and reasoning, I decided to go ahead and sign up. My husband was supportive. I had previously done a few years of youth ministry. That was before kids when I had lots of energy...that version of myself seems long gone, much like that pant size I was back then. I knew I needed to volunteer at the church because I needed to get outside of myself.

Volunteering is a great opportunity to look beyond yourself and meet someone else's needs. Most of the preschool kids there didn't have any significant needs. I can handle buttoning pants and building a tower with blocks. Watching the kids allowed the parents to worship in church without distraction.

The other adults serving along side of me was what I really needed. I go to kind of a big church. In a year, I only knew a couple of people. After volunteering, I got to come in contact with lots of people. Talking to these people allowed me to not carry so much. I was hearing about issues that were in their lives. I was thinking about their situations and praying for them. I remembered that I'm not the only person with problems and stress and a million reasons why I should stay home. It's good to be reminded of that.

The other workers asked about my life. A couple of them really genuinely wanted to know what my life was like with Jaycee. I could be honest with them. I could tell them when I was having a hard time. I nearly had a break down in that room when one of them asked about Jaycee starting kindergarten. I had a few people now on my support team. If Jaycee had an emergency, I had a few people I could count on to pray for her and send me a positive message. 

Some weeks are hard. When Jaycee is refusing to move from the hallway at church or when she's running away from me, I ask myself, "Why do I bother?" Then I remind myself. I have to think about someone else other than me. That is all the teachings of Jesus in a nutshell. It's good for me to spend a few hours serving someone who doesn't have my last name.  All in all, it's been a good year in that class! Now, get out there and serve!
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Thursday, December 6, 2012

Educating the Smart People

Who do you consider "smart?" Is it someone with at least average intelligence? Is it someone who makes good grades? Is it someone who can simply learn anything? What's the measure for you? 

I've been thinking about this lately because someone called Jaycee "smart." There are times when it comes up naturally in conversations. A teacher may say Jaycee is smart because she did a specific task or displayed a new skill. It's a compliment, and it's a natural thing for someone to say. It feels good.

There are times when it doesn't come up so natural.

I think because Jaycee doesn't speak, due to childhood apraxia of speech, that people assume she can't do anything. There are some things that are difficult for her, but there are some areas that she is good in. Before she was 3, she was signing colors, identifying shapes, and starting to recognize letters. She knew hundreds of signs as a toddler. I saw potential in her at a very young age. I knew she was capable of learning and that she was, in fact, smart.

Other people aren't around her all the time. They don't see what I see. They see a girl who looks different. They don't hear words coming out of her mouth. They don't see much of anything in her just from appearances.

But then, she'll get out her computerized communication device and say something on her talker. Sometimes it's something as simple as Jaycee requesting a food on her talker --"pizza please." Sometimes, it's her saying something cute like her meal prayer. Then, they will change their minds about Jaycee. They will say, "She's smart!"  But it's in that tone of complete surprise. Like, they were expecting her to do nothing.

I'm glad Jaycee can change people's minds. But I wish people wouldn't have such low expectations either. Jaycee has many challenges but she has many strengths too. She has a personality. She has likes and dislikes. I wish people could understand that. She is not a zombie walking around through life doing whatever she's told to do. She is a spunky, sometimes stubborn, girl who loves movies, music, and her family.

I wish when someone saw a person with a disability they would assume that they had a special talent, interests, or were just in general "capable." I wish people would assume a person with a disability was "smart" (whatever that means) until proven otherwise.

Most people don't feel that way so Jaycee & I will just keep working on that, one person at a time.

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