College has been a totally new world for me. I'm learning a lot, meeting new people, and trying to adjust to a new schedule away from everything that I knew as home.
One of the biggest parts of that for me has been being away from Claire. Life back at home revolves around Claire. It is almost impossible for us to plan a schedule because that could change any instant with Claire being so unpredictable. It requires flexibility. There is no choice but to work things out. We can't prioritize our needs too seriously because Claire's needs are more important. Even if it seems like her needs are pointless or hard to understand.
Now that I'm in college, I am in a totally different environment than I had been for the past 18 years. It is really hard to be away from Claire. I miss her because she was such a large part of my life, and now I'm miles away from her. Even more so, I miss her because I am now realizing how special she is to me and how she has turned me into the person I've become. She has shaped me and given me a beautiful perspective on life. I'm just so happy that I have the opportunity to share that perspective with the people I see every day.
Monday, November 28, 2011
Thursday, May 19, 2011
Interview with Some of Claire's friends
I took the time to find out how some people outside of our family have been impacted by Claire Bear.
What's the best thing about having Claire as a friend?
Laura S: The best thing about having Claire as a friend has to be the joy she brings to everyone. She's always making you smile and always smiling.
Alex F: She always cheers up my day.
What has Claire taught you?
Laura: She has definitely taught me to enjoy the little things. Claire just gets so excited over simple pleasures.
Alex: She's definitely taught me patience, that i'm not the center of the world, and showed me how to help people and be a servant.
Favorite stories about Claire?
Laura: Every time I sit down on the couch she comes up to me and wants to snuggle and cuddle with me and it's the greatest. Oh and the time she called me 14 times one day!
Alex: My favorite story of Claire is when me and Brian were long-boarding and doing tricks and Claire said, "I wanna do a trick!"and she pushed the skateboard forward with her foot and then started clapping and saying, "Wow Claire! That was A-mazing!"
Favorite quote that Claire says?
Laura: "Wow Claireeee!!!!"
"Don't worry, don't worry Claire. That's fine."
"I wanna show Laura how I do this!"
"My name is Claire, I give big hugs. You're not my friend, if you do drugs."
Lexi: "That's a great idea Brian!!"
Why Is A Special Needs Person So Special?
After growing up with Claire, I understand now that disabled persons know things that we don't know.
Most people interacting with a disabled person will find themselves trying to make that person into "normal" human. In reality, disabled persons have their own agenda and their own way of connecting and being entertained. I haven't really had the choice in my life to not recognize this, because I am surrounded by it every day. Just being integrated into their way of thinking and their communities, even for short periods of time, has given me way more than I could ever give them.
Especially with Claire, I have seen this in big ways. I've had no choice but to realize that the disabled knows things that we don't know, about God and about being. There are a few times that I see this clearly from Claire. One example is on Claire's birthday, we usually give her a new pack of ten markers and some sheets of paper and she will think that's the best present she has ever gotten. She finds so much joy in little things. I know that Claire understands what truly matters in life way more than I ever will. Another way I see this is how non-judgmental and loving Claire is. She will go up to anyone, talk to them, compliment them, and give them a hug. It doesn't matter what they look like or what they've done. None of that matters. Claire still has the same joy and love flowing out of her in literally every situation. We need to recognize how valuable disabled lives really are.
A lot of people on the outside do see a disabled person as a problem that should be fixed, or a burden to be carried, which is very unfortunate. People need to recognize how valuable disabled persons lives really are. They are just as valuable as ours, people just need to look for their value in different ways that we do for a "normal" humans value. If their lives weren't valuable, families wouldn't pay $200,000 a year for these kids to live in a community that they love.
Claire has absolutely taught me a ton through her joy in the little details of life, being non-judgmental, and not ever holding grudges. I hope that through my experience you can understand a little more about the ins-and-outs of a life with autism.
Especially with Claire, I have seen this in big ways. I've had no choice but to realize that the disabled knows things that we don't know, about God and about being. There are a few times that I see this clearly from Claire. One example is on Claire's birthday, we usually give her a new pack of ten markers and some sheets of paper and she will think that's the best present she has ever gotten. She finds so much joy in little things. I know that Claire understands what truly matters in life way more than I ever will. Another way I see this is how non-judgmental and loving Claire is. She will go up to anyone, talk to them, compliment them, and give them a hug. It doesn't matter what they look like or what they've done. None of that matters. Claire still has the same joy and love flowing out of her in literally every situation. We need to recognize how valuable disabled lives really are.
A lot of people on the outside do see a disabled person as a problem that should be fixed, or a burden to be carried, which is very unfortunate. People need to recognize how valuable disabled persons lives really are. They are just as valuable as ours, people just need to look for their value in different ways that we do for a "normal" humans value. If their lives weren't valuable, families wouldn't pay $200,000 a year for these kids to live in a community that they love.
Claire has absolutely taught me a ton through her joy in the little details of life, being non-judgmental, and not ever holding grudges. I hope that through my experience you can understand a little more about the ins-and-outs of a life with autism.
Budget Cuts in Illinois
Governor Pat Quinn's proposed budget cuts could affect the disabled. The Circuit Breaker program that is currently in place is worth about $107 Million. Pat Quinn has proposed that we cut this in order to use the money elsewhere.
Personally, I am very thankful for government funding toward families with disabled persons. Care for a disabled child and especially adult can be very costly. Parents are forced to always be thinking and planning ahead for their children. Most parents are working towards a certain level of independence for their child, which usually means putting them in some sort of assisted living or group home. Doing this is very costly and parents are also often forced to worry about what will happen after they die if their child is still living. Ian Brown, while talking about his new memoir "The Boy and the Moon," said that care for his son Walker for the rest of his life would cost about $8 Million.
If the government does not set aside funds for the disabled, then who will? It is hard enough for families to work through plans for their disabled children's futures, let alone pay a large sum of money to ensure their child's happy, safe, and enjoyable life.
Budget cuts, particularly in Illinois, are very unnecessary. In fact, Illinois families dealing with disabled children should be very high on our list of priorities. It is our duty to care for the disabled and make sure they live a complete joyful life.
Personally, I am very thankful for government funding toward families with disabled persons. Care for a disabled child and especially adult can be very costly. Parents are forced to always be thinking and planning ahead for their children. Most parents are working towards a certain level of independence for their child, which usually means putting them in some sort of assisted living or group home. Doing this is very costly and parents are also often forced to worry about what will happen after they die if their child is still living. Ian Brown, while talking about his new memoir "The Boy and the Moon," said that care for his son Walker for the rest of his life would cost about $8 Million.
If the government does not set aside funds for the disabled, then who will? It is hard enough for families to work through plans for their disabled children's futures, let alone pay a large sum of money to ensure their child's happy, safe, and enjoyable life.
Budget cuts, particularly in Illinois, are very unnecessary. In fact, Illinois families dealing with disabled children should be very high on our list of priorities. It is our duty to care for the disabled and make sure they live a complete joyful life.
Don't you with Claire was normal?
One question that our family has come across over the years is "Don't you wish Claire was normal?"
This is definitely a complicated question with many different sides to it.
First of all, I would undoubtedly say that all of my family members would love it if Claire was normal for her sake. Claire does have a lot of struggles in her life and I think she would be a lot happier if she was normal. She would be able to understand more and have a lot less worrying and stress in her life. We would love if Claire didn't have the stress that she does in her life.
Along with these thoughts, there is definitely a part of me that is still very thankful for the way life is. She has taught our family so much and we would not be as well-rounded as we have become if it wasn't for her. She is always teaching us and bringing us joy. She has bonded our family and brought us closer to each other and to God.
We are so blessed to have Claire and she has taught us countless lessons. There is a book called Heaven is For Real written by Todd Burpo. It talks about a young boys encounter with heaven and how real it is. While reading this book, it got me thinking about how God is going to heal Claire's body when we get to heaven. It will be an amazing experience that I am looking forward to more than anything. I can't wait to be able to hang out with Claire and have her be able to fully communicate with me. I can't wait to truly know her as a person and a sister and be able to talk about what she really thinks.
For now she will only ever say to me: "I like your hair" or "How are you, Brian?!" But I am so grateful for Claire's impact in our lives, and I look forward to the day when I will be able to experience her in her complete perfect body.
This is definitely a complicated question with many different sides to it.
First of all, I would undoubtedly say that all of my family members would love it if Claire was normal for her sake. Claire does have a lot of struggles in her life and I think she would be a lot happier if she was normal. She would be able to understand more and have a lot less worrying and stress in her life. We would love if Claire didn't have the stress that she does in her life.
Along with these thoughts, there is definitely a part of me that is still very thankful for the way life is. She has taught our family so much and we would not be as well-rounded as we have become if it wasn't for her. She is always teaching us and bringing us joy. She has bonded our family and brought us closer to each other and to God.
We are so blessed to have Claire and she has taught us countless lessons. There is a book called Heaven is For Real written by Todd Burpo. It talks about a young boys encounter with heaven and how real it is. While reading this book, it got me thinking about how God is going to heal Claire's body when we get to heaven. It will be an amazing experience that I am looking forward to more than anything. I can't wait to be able to hang out with Claire and have her be able to fully communicate with me. I can't wait to truly know her as a person and a sister and be able to talk about what she really thinks.
For now she will only ever say to me: "I like your hair" or "How are you, Brian?!" But I am so grateful for Claire's impact in our lives, and I look forward to the day when I will be able to experience her in her complete perfect body.
Thursday, May 12, 2011
Special Olympics
Claire Mac had a very very very great day on Sunday, May 1st at the Special Olympics.
Claire has been participating in the Special Olympics for the past 6 or 7 years, and that has brought about a lot of stories and great memories. Our family calls it the best day of the year for a couple reasons. Throughout the year, Claire is always coming along to events to watch people in our family succeed or compete. For example she comes to my sporting events or my music performances. For Claire, these events are very hard for her to fit in at. Special Olympics season is the one part of the year where Claire is the one we are watching and focused on. She loves this day and it truly is the best day of the year for us.
Claire competed in two events this year: the 50 Yard dash, and the Softball throw.
Probably the most refreshing thing for our family is Claire's attitude about winning. She is more concerned about the color of her ribbon or medal that she wins than actually winning the "gold." In one instance two years ago, Claire won a Gold medal in the 100 Yard Dash. She was actually sad about this because she liked the color of the blue ribbon better and she wished she had that. This has taught us to think about what really matters and re-think our attitude towards situations in life.
For the first couple years that Claire was competing in the Special Olympics, she was placed in the 50 Yard walk. She actually got disqualified from it both times because she got so excited that she started to skip during the walk. Claire shows so much joy during the Special Olympics and it is enriching to be in such a positive environment and watch her have fun.
I love the spring season of Special Olympics, but still not as much as Claire does. It brings me deep joy to see her having so much fun and to see her childlike attitude. Claire is an amazing example for our family, and she has shaped who we are today. It is so cool to learn from her daily by looking at life from her perspective.
Claire has been participating in the Special Olympics for the past 6 or 7 years, and that has brought about a lot of stories and great memories. Our family calls it the best day of the year for a couple reasons. Throughout the year, Claire is always coming along to events to watch people in our family succeed or compete. For example she comes to my sporting events or my music performances. For Claire, these events are very hard for her to fit in at. Special Olympics season is the one part of the year where Claire is the one we are watching and focused on. She loves this day and it truly is the best day of the year for us.
Claire competed in two events this year: the 50 Yard dash, and the Softball throw.
Probably the most refreshing thing for our family is Claire's attitude about winning. She is more concerned about the color of her ribbon or medal that she wins than actually winning the "gold." In one instance two years ago, Claire won a Gold medal in the 100 Yard Dash. She was actually sad about this because she liked the color of the blue ribbon better and she wished she had that. This has taught us to think about what really matters and re-think our attitude towards situations in life.
For the first couple years that Claire was competing in the Special Olympics, she was placed in the 50 Yard walk. She actually got disqualified from it both times because she got so excited that she started to skip during the walk. Claire shows so much joy during the Special Olympics and it is enriching to be in such a positive environment and watch her have fun.
I love the spring season of Special Olympics, but still not as much as Claire does. It brings me deep joy to see her having so much fun and to see her childlike attitude. Claire is an amazing example for our family, and she has shaped who we are today. It is so cool to learn from her daily by looking at life from her perspective.
Friday, May 6, 2011
Claire at Church
One big area of support that our family has found with Claire is at our church. It is really cool to be able to take Claire to a community where people know how to treat her. They understand Claire and truly care about her. When we bring Claire to church, it takes even a little bit of pressure off of us because we know she is in a safe place and we don't really have to keep an eye on her or look after her because we know that everyone else in our church will do that.
For one thing, Claire is welcomed at Children's Worship at our church. This happens during the main service, the kids go downstairs and have their own little service and message. Claire loves to join them singing and listening. She is sure to be happy when she's at Children's Worship.
Another part of our church that has been great for Claire is Sunday School. There are multiple different classes that happen during the Sunday School hour, and our church even offers a sunday school that consists of only kids that have special needs. This is a blast for Claire. She gets to color and hang out with some of her favorite adults and peers.
Nowadays, Claire rarely comes into the sanctuary during the church service. (Although she is often seen opening and closing all of the doors during the sermon). One of Claire's favorite parts of Church is the worship, but it is hard to get her to come into the sanctuary because for some reason she doesn't want to! The few times that Claire does come into the sanctuary for worship, she glows with excitement. Clapping her hands and singing at all times. During some songs that Claire really likes, she even cries because she is so joyful. Watching Claire worship is truly amazing.
Claire gets to come to church not only on Sundays, but on Wednesdays as well when our high school youth group meets. I get to bring Claire with and she loves hanging out with all of us. Claire helps me lead worship on stage every Wednesday clapping her hands and singing passionately. It is a lot of fun to have Claire with at youth group. She brings a ton of joy into the room every week.
Our church, Glen Ellyn Evangelical Covenant, has offered great support with aides for Claire, Sunday School, and youth group. Not only that, but even behind the scenes with parent support groups and prayer for families. Glen Ellyn Covenant is a safe-haven for families with special needs to feel welcomed and included and has been a huge blessing for our family and Claire.
For one thing, Claire is welcomed at Children's Worship at our church. This happens during the main service, the kids go downstairs and have their own little service and message. Claire loves to join them singing and listening. She is sure to be happy when she's at Children's Worship.
Another part of our church that has been great for Claire is Sunday School. There are multiple different classes that happen during the Sunday School hour, and our church even offers a sunday school that consists of only kids that have special needs. This is a blast for Claire. She gets to color and hang out with some of her favorite adults and peers.
Nowadays, Claire rarely comes into the sanctuary during the church service. (Although she is often seen opening and closing all of the doors during the sermon). One of Claire's favorite parts of Church is the worship, but it is hard to get her to come into the sanctuary because for some reason she doesn't want to! The few times that Claire does come into the sanctuary for worship, she glows with excitement. Clapping her hands and singing at all times. During some songs that Claire really likes, she even cries because she is so joyful. Watching Claire worship is truly amazing.
Claire gets to come to church not only on Sundays, but on Wednesdays as well when our high school youth group meets. I get to bring Claire with and she loves hanging out with all of us. Claire helps me lead worship on stage every Wednesday clapping her hands and singing passionately. It is a lot of fun to have Claire with at youth group. She brings a ton of joy into the room every week.
Our church, Glen Ellyn Evangelical Covenant, has offered great support with aides for Claire, Sunday School, and youth group. Not only that, but even behind the scenes with parent support groups and prayer for families. Glen Ellyn Covenant is a safe-haven for families with special needs to feel welcomed and included and has been a huge blessing for our family and Claire.
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