Laura has had a busy week this week, and it is only Tuesday.
Yesterday (Monday 5-24-10) Laura decided it was time she helped to feed herself. This is something that Tara and Laura have been working on for some time. The closest Laura has gotten to accomplishing this goal, was to be able to grab her bowls, bang them briefly then toss them on the floor. A big mess is sometimes made (if there was food in them), and big laugh is had by Laura and whoever saw her do it (this makes me wonder if she has my diabolical streak), then we clean up and try again.
Yesterday, at her snack time, she purposefully reached forward and pulled her snack to her mouth and began chewing. She was working on two different items. The first one is a little cloth like baggy that you put chucks of fruit in to. The purpose of this device is to teach children to chew. The theory is that the child bites down on the fruit filled bag and some of the juice from the fruit comes out. To me it sounds kind of weird, but it is actually kind of cool. Laura was able to pick her fruit baggy up several times, and get it to her mouth to chew on. She did this with little help and allot of encouragement from Tara. She even worked on transferring the bag from one hand to the other.
Laura also took a rice cracker from Tara's had and chewed on it. In the past, the closest Laura had gotten to something like this would involve her grabbing one of our hands that had some of her food in it, and she would then pull that hand to her and we would have to guide the food into her mouth. However, yesterday she took the cracker from Tara's hand and chewed on it several times. I am hoping to have a video of this posted on my FaceBook page later today.
Beyond the chewing, she is getting better at standing. And, she happily drinks her bottle through a straw. We are still sometime away from her drinking out of a cup, but we are getting closer. She can hold a cup or glass all by herself though. I know these may only seem like little things to some people, but to us they are huge, and we are very excited.
Tuesday, May 25, 2010
Tuesday, May 18, 2010
Thoughts from the "other side"
I have been a little down lately. Sometimes my thoughts focus on some of the opportunities that Laura might miss out on, because she has Down Syndrome.
For instance, will she go to college? I know of several adults with Down Syndrome that have attended and graduated from various colleges and universities around the country. Recent national legislation has certainly made it a little easier for people with special needs of all ages to get a post secondary education. This legislation is a critical first step. Now public universities need to step up and use it.
But it does not answer the question, will Laura go to college? Tara and I certainly want her to. We are trying to plan for her, and any other children that we may have, to go to college. Do not read anything into that statement. To our knowledge, neither one of us is pregnant. Our parents, Laura's grandparents, certainly want Laura to go to college. But will she go? Will she be able to function at a level where college is a viable option for her? We are certainly trying to do everything we can to ensure she is equipped to go. But will she?
Will Laura get married? Will Tara and I stand in the bridal sweet watching as Laura and her friends finish getting ready? Will I be praying as I walk her down the aisle "Please God, do not let me trip and ruin Laura's moment?"
Will she get to have kids of her own to care for, and love, and be loved by?
Will she need someone to watch over her and care for her, her entire life? This is a question I struggle with daily.
All of this brings one question to my mind. How severe will Laura's Down Syndrome be? Yes there are various levels of Down Syndrome. The answer right now is, we do not know. And that is what is most maddening about all of this. I hate not knowing. It drives me crazy.
When my mind wonders down this road, this "other side", it makes me sad. I try not to go there very often. But, sometimes I just cannot seem to help it. And it is ok to go down this road sometimes. It is part of being a parent in general, and being a parent of a special needs child in particular. Every parent does it from time to time.
Those who say they never get down about their child's potentially very different future, are in denial about their state of mourning. Mourning the perceived loss of a child's future is normal. There is nothing wrong with someone who experiences a mourning like state for a time when they find out their child will have special needs.
I have met a few parents that are in such deep denial about their state, that they are actually angry that their children are not "normal". They are not angry with their children, but rather they are angry that their child will be different. This is a mentality that I do not understand.
Every person is a unique creation. Every individual is special, and different from every other individual. So why are some parents so upset that their child is different? Their child is different, just like every other child out there. I understand for some people, that it can be hard to accept that their child will not be "normal", whatever that means.
But in reality these kids, or people, are no different than anyone else. Just like everyone else, they do things at their own pace, and in their own time.
For instance, Laura. I wrote a week or two ago that she has shown little interest in learning to crawl. However, she is very interested in learning to stand. She has no interest in learning to drink from a sippy cup. But, if you put a glass in front of her, she cannot get to it fast enough to take a drink. Which if she is allowed to do so by herself, the glasses contents usually wind up all over everything (she is only 11 months old after all). Learning things in her own way, and in her own time.
The only trick is not to get stuck in this "other side". I try to focus on this amazing gift that God has bestowed upon Tara and I. Laura has already had an impact on so many people, and she is not even a year old. In truth, I cannot wait to discover what other wonders are in store for her as we move forward.
For instance, will she go to college? I know of several adults with Down Syndrome that have attended and graduated from various colleges and universities around the country. Recent national legislation has certainly made it a little easier for people with special needs of all ages to get a post secondary education. This legislation is a critical first step. Now public universities need to step up and use it.
But it does not answer the question, will Laura go to college? Tara and I certainly want her to. We are trying to plan for her, and any other children that we may have, to go to college. Do not read anything into that statement. To our knowledge, neither one of us is pregnant. Our parents, Laura's grandparents, certainly want Laura to go to college. But will she go? Will she be able to function at a level where college is a viable option for her? We are certainly trying to do everything we can to ensure she is equipped to go. But will she?
Will Laura get married? Will Tara and I stand in the bridal sweet watching as Laura and her friends finish getting ready? Will I be praying as I walk her down the aisle "Please God, do not let me trip and ruin Laura's moment?"
Will she get to have kids of her own to care for, and love, and be loved by?
Will she need someone to watch over her and care for her, her entire life? This is a question I struggle with daily.
All of this brings one question to my mind. How severe will Laura's Down Syndrome be? Yes there are various levels of Down Syndrome. The answer right now is, we do not know. And that is what is most maddening about all of this. I hate not knowing. It drives me crazy.
When my mind wonders down this road, this "other side", it makes me sad. I try not to go there very often. But, sometimes I just cannot seem to help it. And it is ok to go down this road sometimes. It is part of being a parent in general, and being a parent of a special needs child in particular. Every parent does it from time to time.
Those who say they never get down about their child's potentially very different future, are in denial about their state of mourning. Mourning the perceived loss of a child's future is normal. There is nothing wrong with someone who experiences a mourning like state for a time when they find out their child will have special needs.
I have met a few parents that are in such deep denial about their state, that they are actually angry that their children are not "normal". They are not angry with their children, but rather they are angry that their child will be different. This is a mentality that I do not understand.
Every person is a unique creation. Every individual is special, and different from every other individual. So why are some parents so upset that their child is different? Their child is different, just like every other child out there. I understand for some people, that it can be hard to accept that their child will not be "normal", whatever that means.
But in reality these kids, or people, are no different than anyone else. Just like everyone else, they do things at their own pace, and in their own time.
For instance, Laura. I wrote a week or two ago that she has shown little interest in learning to crawl. However, she is very interested in learning to stand. She has no interest in learning to drink from a sippy cup. But, if you put a glass in front of her, she cannot get to it fast enough to take a drink. Which if she is allowed to do so by herself, the glasses contents usually wind up all over everything (she is only 11 months old after all). Learning things in her own way, and in her own time.
The only trick is not to get stuck in this "other side". I try to focus on this amazing gift that God has bestowed upon Tara and I. Laura has already had an impact on so many people, and she is not even a year old. In truth, I cannot wait to discover what other wonders are in store for her as we move forward.
Wednesday, May 12, 2010
Mother's Day and Facebook
I know it seems weird to be mentioning Facebook on this blog, but I am continually amazed at the community on facebook. The community on facebook is incredibly supportive. I daily see comments of concern, support and encouragement. Questions are routinely asked and answered in a loving, caring and respectful way.
I follow two particular pages. They are the National Down Syndrome Society and Down Syndrome Blogs. The Down Syndrome Blogs are driven by the community itself. Many people there are very happy to talk about their experiences with Down Syndrome, give advise or just provide whatever support you might need. You can also find local Down Syndrome activities posted there.
The National Down Syndrome Society's page on Facebook is just that, it is the National Down Syndrome Society's presence on Facebook. It is a great place to get the latest information on what is going on in the Down's world.
Mother's Day went wonderfully. Tara loved her gift from Laura. Tara continues to flip through it everyday. Laura is already a great gift giver. She must get that from someone else.
I follow two particular pages. They are the National Down Syndrome Society and Down Syndrome Blogs. The Down Syndrome Blogs are driven by the community itself. Many people there are very happy to talk about their experiences with Down Syndrome, give advise or just provide whatever support you might need. You can also find local Down Syndrome activities posted there.
The National Down Syndrome Society's page on Facebook is just that, it is the National Down Syndrome Society's presence on Facebook. It is a great place to get the latest information on what is going on in the Down's world.
Mother's Day went wonderfully. Tara loved her gift from Laura. Tara continues to flip through it everyday. Laura is already a great gift giver. She must get that from someone else.
Monday, May 3, 2010
Tucson is lonely
As some of you know I am in Tucson to help train the new staff for the new store REI is opening. Tucson is a new market for us. It is a beautiful city. The thing I love most about it is the fact that a high humidity day is humidity in the low thirties. Gotta love that.
However, I am in Tucson. Tara and Laura are at home in Houston. I miss them terribly. I new that would be the case, but still I am lonely.
Laura is laughing more and more with each passing day. She is starting to learn to drink from a real cup and not a bottle. For the record, she does not like sippy cups. I am glad. She is beginning to work on the precrawling activities. I am hoping that she is only a month or two away from being mobile.
Now here is the thing I think is funny. She is more interested in standing than crawling. I think this is too cool.
We had a meeting at the Down Syndrome clinic at Texas Children's last week. It went well. Over all they were very pleased and excited about where Laura is and how she was doing. They quickly discovered Laura is people person. They had some exercises they want ed Laura to do that required her to interact with various objects and toys that they had. The munchkin had no interest in the toys. She just wanted to get to know the new people. From our perspective, it was par fro the course. They doctor and 2 therapists were really amazed at how engaging and charming she is. I told them she gets that from her mother.
They did say they wanted us to start some physical therapy in addition to our occupational therapy. Yes you read that correctly it. It is my plan for Laura to get a job and start pulling her own weight. She has been mooching of of Tara and I way to long! They even recommended that We start putting Laura in to high top shoes to help her support her feet and ankles as she starts to stand and walk. This is a concern because people with Down's tend to have low muscle tone, which Laura has been working hard to over come. That has been what the occupational therapy has been for.
This was bitter sweet for me. I have been adamant about her not wearing shoes until she starts to walk. Now I have to give in because the doctor said that the high top style will help her. That is the bitter part. The sweet part is that I work for an outdoor retailer and she is going to get hiking boots as her first regular pair of shoes!!! And the hairy legged mountain woman trend continues. Anyone who is curious about that comment, ask Tara.
We went through Second's parent child commitment ceremony a couple of weeks ago. All of Laura's grandparents were in attendance, including her great grandmother. The startled look on Ben Young's face was hilarious when he saw Tara, Laura and I standing there. He actually played with Laura for a moment before he moved on to the next couple. To me that was to cool, because I had never seen any of our pastors do that before.
I will be home in a couple of days, and I cannot wait to see Tara and Laura.
However, I am in Tucson. Tara and Laura are at home in Houston. I miss them terribly. I new that would be the case, but still I am lonely.
Laura is laughing more and more with each passing day. She is starting to learn to drink from a real cup and not a bottle. For the record, she does not like sippy cups. I am glad. She is beginning to work on the precrawling activities. I am hoping that she is only a month or two away from being mobile.
Now here is the thing I think is funny. She is more interested in standing than crawling. I think this is too cool.
We had a meeting at the Down Syndrome clinic at Texas Children's last week. It went well. Over all they were very pleased and excited about where Laura is and how she was doing. They quickly discovered Laura is people person. They had some exercises they want ed Laura to do that required her to interact with various objects and toys that they had. The munchkin had no interest in the toys. She just wanted to get to know the new people. From our perspective, it was par fro the course. They doctor and 2 therapists were really amazed at how engaging and charming she is. I told them she gets that from her mother.
They did say they wanted us to start some physical therapy in addition to our occupational therapy. Yes you read that correctly it. It is my plan for Laura to get a job and start pulling her own weight. She has been mooching of of Tara and I way to long! They even recommended that We start putting Laura in to high top shoes to help her support her feet and ankles as she starts to stand and walk. This is a concern because people with Down's tend to have low muscle tone, which Laura has been working hard to over come. That has been what the occupational therapy has been for.
This was bitter sweet for me. I have been adamant about her not wearing shoes until she starts to walk. Now I have to give in because the doctor said that the high top style will help her. That is the bitter part. The sweet part is that I work for an outdoor retailer and she is going to get hiking boots as her first regular pair of shoes!!! And the hairy legged mountain woman trend continues. Anyone who is curious about that comment, ask Tara.
We went through Second's parent child commitment ceremony a couple of weeks ago. All of Laura's grandparents were in attendance, including her great grandmother. The startled look on Ben Young's face was hilarious when he saw Tara, Laura and I standing there. He actually played with Laura for a moment before he moved on to the next couple. To me that was to cool, because I had never seen any of our pastors do that before.
I will be home in a couple of days, and I cannot wait to see Tara and Laura.
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