October 31st. The last day of Down Syndrome Awareness month. I feel like I failed. I don't believe I brought awareness to anyone outside the Ds community. I posted (almost) every day... to other parents who are already aware of Down Syndrome. But if I had an opportunity, say a commercial spot that would be broadcast to the world, or maybe my state, or city, what would I tell them?
Just say Hi. When you walk by, just say hi to her. She's a person. She has hopes, dreams and goals, just like you. She has hobbies, just like you. She laughs, she gets her feelings hurt, she loves, she cries. She wants people to like her, just like you. She likes to hang out with friends, just like you. She's compassionate. She doesn't judge. Give her a chance. Just say Hi. You may find that she's more like you than you know. You may find that you have more in common than you expect. You may find that she's the lifelong friend you've been looking for. Just say Hi.
I've been thinking about this for a few days now but still don't feel
like I could say anything that would change the world. Plain words aren't going to do it. People have to want to change. People have to begin to think differently. But what if my words
change just one person? What if it did bring awareness to someone, just one, who could
then change the world of someone who has Down Syndrome?
Wednesday, October 31, 2012
Tuesday, October 30, 2012
31 For 21 - Two Kinds Of People
We are snooze alarm people. We all hit our snooze alarm numerous times before actually getting up. Chuck probably hits his the least, maybe once or twice before sitting up on the side of the bed for a few minutes.
My alarm clock is across the room so I have to get out of bed to turn it off. But that doesn't deter me. I usually hit my snooze alarm 4-6 times every morning! I groggily head back to bed mumbling, "Jus' 5 more minutes."
Diana hits her snooze alarm so many times, her alarm stops going off. Then she falls back asleep and flies out of bed just moments before she needs to head out the door. She always manages to look amazing though.
Beth usually hits her snooze alarm 3-4 times before she sits up on the side of her bed. (Like father like daughter... in so many ways!) She moves slow in the morning, slower than usual.
Except this morning. This morning she got up right away. She was dressed and upstairs just 10 minutes after her alarm went off.
Then I remembered. They had a Halloween party at the bowling alley today. Beth decided not to dress up this year but she was excited to go!! And she scored a 112 for her first game!
My alarm clock is across the room so I have to get out of bed to turn it off. But that doesn't deter me. I usually hit my snooze alarm 4-6 times every morning! I groggily head back to bed mumbling, "Jus' 5 more minutes."
Diana hits her snooze alarm so many times, her alarm stops going off. Then she falls back asleep and flies out of bed just moments before she needs to head out the door. She always manages to look amazing though.
Beth usually hits her snooze alarm 3-4 times before she sits up on the side of her bed. (Like father like daughter... in so many ways!) She moves slow in the morning, slower than usual.
Except this morning. This morning she got up right away. She was dressed and upstairs just 10 minutes after her alarm went off.
Then I remembered. They had a Halloween party at the bowling alley today. Beth decided not to dress up this year but she was excited to go!! And she scored a 112 for her first game!
Monday, October 29, 2012
31 For 21 - Constantly Progressing
Beth has been talking so much lately. For many years she's been quiet, not saying much. Not giving her opinion about things. Not engaging in conversation.
But lately she's been talking a lot. About her life, about her wants and her opinions. She's engaging us in conversation. She's spending more time upstairs instead of alone in her apartment downstairs.
I plan to write more about this another day, but that's what I've been noticing about Beth lately. She's talking a lot. And I like it.
But lately she's been talking a lot. About her life, about her wants and her opinions. She's engaging us in conversation. She's spending more time upstairs instead of alone in her apartment downstairs.
I plan to write more about this another day, but that's what I've been noticing about Beth lately. She's talking a lot. And I like it.
Sunday, October 28, 2012
31 For 21 - As Hard As I thought
This blogging every day for an entire month is as hard as I thought it was going to be. I got on the computer for a few minutes just to check email and as I'm getting ready to close it down I remembered I hadn't posted yet today!
We went to church this morning. As we were leaving Beth went over to Common Grounds, our coffee stand. I was afraid she was gonna order another drink but we were in a hurry cause Chuck was called into work.
I dashed over to her and asked what she was getting. She said she was just getting a can of soda. She takes one with her when she goes bowling on Tuesdays. I said okay and told her to get out her money.
That's when the barista said, "She already paid. She's on top of it!" Beth grabbed her soda and looked at me, "Uh, yea!!"
We went to church this morning. As we were leaving Beth went over to Common Grounds, our coffee stand. I was afraid she was gonna order another drink but we were in a hurry cause Chuck was called into work.
I dashed over to her and asked what she was getting. She said she was just getting a can of soda. She takes one with her when she goes bowling on Tuesdays. I said okay and told her to get out her money.
That's when the barista said, "She already paid. She's on top of it!" Beth grabbed her soda and looked at me, "Uh, yea!!"
Saturday, October 27, 2012
31 For 21 - An Old Photo
We have a large wardrobe downstairs that's filled with photo albums, wrapping paper, etc. I've been trying to clean it out, sort through stuff and get rid of things we don't need. Today I found this picture of Beth. It's her 11th grade photo. I love this picture of her, she looks so happy and confident.
Friday, October 26, 2012
31 For 21 - Busses
Beth began riding the school bus when she was about 2 1/2. She rode it every weekday until she was 21. Except for the two years we home schooled. And the one year she attended the elementary school in our neighborhood. So for about 15 years, Beth rode a school bus.
After she graduated from high school she entered VOICE, a great program run by the schools, to help kids and their families transition from the school district to the state run programs. One of the things we had to do was sign her up for DART. Our Community Transit system called Dial A Ride Transportation. It's for people who are unable to ride the regular transit buses and they go door to door. It's perfect for Beth because it allows her independence, but insures her safety. They pull into our driveway and drop her off at the door to the bowling alley. Or the mall or wherever she wants to go. Then they drop her back off at our front door.
We call at least two days ahead of time (it's no good for last minute excursions) and let them know where she's going, when she needs to arrive and what time she wants to come home. They do all the rest! And the drivers are basic community transit employees who volunteer to drive the DART buses. No easy job, let me tell ya.
Every few years we have to fill out a new application for DART. We have to explain why Beth needs to ride DART; why she isn't able to ride the regular CT bus. It sort of shocks you, reminds you once again that your daughter has special needs. You know how, after a while you just kind of forget? You know, she's just.... Beth. Well, every time I fill out this application, it's like I have to accept the Down Syndrome all over again. Every question reminds me that she is different.
Please clarify how your health condition or disability prevents you from getting to or using the regular fixed-route system.Then your choices:
1. I have difficulty knowing where to get on and off the bus because...
2. I am unable to figure out how to get from here to there in the desired time because...
3. I cannot transfer between buses because...
4. I cannot understand instructions from the bus driver because...
And on it goes.
Developmental, mental and behavioral conditions:
Autism - Mild, Moderate or Severe
Bipolar Disorder - Mild, Moderate or Severe
Down Syndrome - Mild, Moderate or Severe
You circle the condition and what level your child is. There are 13 to choose from.
Do you need the DART driver to assist you from your door to the bus?
At your destination, do you know where you are and can you enter by yourself?
Please explain in detail, any other considerations about your disability that will help us determine you eligibility.
It's 11 pages long.
Don't get me wrong, I'm so absolutely grateful for DART! It's been such a blessing for Beth. I can't imagine what her life would be like without DART. I pray for the drivers, it's a job I couldn't do, that's for sure!
It's just hard to read through this application. It's hard to write down the answers. It puts in black and white, all of Beth's shortcomings and disabilities. It screams at me, 'Your child has special needs! Your child is different!'
Thursday, October 25, 2012
31 For 21 - Doing It Again
Yep, I'm gonna cheat again. Just too tired for a long post.
Allison Lucy.
She'll be 3 the first week in December.
I adore this girl!
Wednesday, October 24, 2012
31 For 21 - Lessons We Learned
Lessons We Learned While Raising Beth
Explain Everything.
We didn't used to explain transitions to Beth. Looking back now I wonder how we could have missed this important issue. When I say transitions, I mean like vacations, moving, changing schools. I don't ever remember sitting down with her and explaining, in detail, what was going to happen. I think we just told her the same way we told Sharaya and Diana. We realized this when we took a vacation to the East Coast. The first 4 days Beth was just a bear. She wouldn't talk to us. She was angry. At one point we were walking around New York and she just sat down. On the sidewalk. She finally opened up to us and we realized she thought this was our new life now. That we had left everything back in Seattle and this was home. We hadn't told her it was only a vacation!! Now we tell her in advance, mark it on her calendar and we talk about it a lot. She's able to ask questions, express her fears. It makes her a part of the entire experience instead of just going along for the ride.
Puberty
Beth was 9 1/2 when we began to see physical changes, hair under her arms, etc. At 13 we bought her first bra and she started her period. A few months before Beth started her period, she would itch... down there. And so she would scratch. (It wasn't until Sharaya was going through this that we realized it was a sign of things to come.) I had been praying for some time about this day. I was so afraid that it would happen while Beth was at school. But, thankfully it happened on a quiet Saturday morning. She got up to go to the bathroom and yelled, "Mom!!" I knew instantly. :) I showed her how to put on a pad and talked to her about being a young woman now. I monitored her throughout the day, making sure she was changing it regularly. The next day she went to the bathroom and called me again. She showed me the spot on her pad and said, "Not again!" Maybe I didn't explain the whole '35 years of this' quite well enough. Now all I have to do is ask her if there's enough in the cupboard. If not, she writes it on the grocery list.
Style
It was hard to find shoes and clothes that fit Beth and reflected her age. At 14 she was 5'9" and weighed barely 100 pounds. People thought she was a 4th grader. But naturally, she wanted adult clothes and shoes. We had the hardest time finding size 4 shoes that didn't have the Lion King on them! I remember going from store to store looking for shoes she liked. I think we finally found some at payless. We still shop there today.
Guardianship
As Beth got closer to her high school graduation, we had the school tell us that we had to submit paperwork to become her legal guardian. They told us all kinds of scary stories of kids being sold cars they couldn't afford and people stealing from them. Being the compliant parents we are, we filled out the paperwork, hired a lawyer and began the process. The lawyer was a friend of ours from church and he began to ask us questions. Did Beth often go places by herself? Was Beth interested in having a car? Would Beth open a checking account without us? We began to realize that it probably wasn't necessary to become her guardian that year. Well it's been 10 years and we're still not her legal guardians. At her job service, Beth signed a form saying they can talk directly to us and that that we're able to make decisions with her. Companies have been very accommodating when it comes to talking with us and with Beth. We include Beth in decisions: does she want a checking account or not; does she want to learn to drive a car; is she interested in moving out on her own. Now, every family is different and you may choose to become your child's legal guardian. But just know it's not a requirement.
Explain Everything.
We didn't used to explain transitions to Beth. Looking back now I wonder how we could have missed this important issue. When I say transitions, I mean like vacations, moving, changing schools. I don't ever remember sitting down with her and explaining, in detail, what was going to happen. I think we just told her the same way we told Sharaya and Diana. We realized this when we took a vacation to the East Coast. The first 4 days Beth was just a bear. She wouldn't talk to us. She was angry. At one point we were walking around New York and she just sat down. On the sidewalk. She finally opened up to us and we realized she thought this was our new life now. That we had left everything back in Seattle and this was home. We hadn't told her it was only a vacation!! Now we tell her in advance, mark it on her calendar and we talk about it a lot. She's able to ask questions, express her fears. It makes her a part of the entire experience instead of just going along for the ride.
Puberty
Beth was 9 1/2 when we began to see physical changes, hair under her arms, etc. At 13 we bought her first bra and she started her period. A few months before Beth started her period, she would itch... down there. And so she would scratch. (It wasn't until Sharaya was going through this that we realized it was a sign of things to come.) I had been praying for some time about this day. I was so afraid that it would happen while Beth was at school. But, thankfully it happened on a quiet Saturday morning. She got up to go to the bathroom and yelled, "Mom!!" I knew instantly. :) I showed her how to put on a pad and talked to her about being a young woman now. I monitored her throughout the day, making sure she was changing it regularly. The next day she went to the bathroom and called me again. She showed me the spot on her pad and said, "Not again!" Maybe I didn't explain the whole '35 years of this' quite well enough. Now all I have to do is ask her if there's enough in the cupboard. If not, she writes it on the grocery list.
Style
It was hard to find shoes and clothes that fit Beth and reflected her age. At 14 she was 5'9" and weighed barely 100 pounds. People thought she was a 4th grader. But naturally, she wanted adult clothes and shoes. We had the hardest time finding size 4 shoes that didn't have the Lion King on them! I remember going from store to store looking for shoes she liked. I think we finally found some at payless. We still shop there today.
Guardianship
As Beth got closer to her high school graduation, we had the school tell us that we had to submit paperwork to become her legal guardian. They told us all kinds of scary stories of kids being sold cars they couldn't afford and people stealing from them. Being the compliant parents we are, we filled out the paperwork, hired a lawyer and began the process. The lawyer was a friend of ours from church and he began to ask us questions. Did Beth often go places by herself? Was Beth interested in having a car? Would Beth open a checking account without us? We began to realize that it probably wasn't necessary to become her guardian that year. Well it's been 10 years and we're still not her legal guardians. At her job service, Beth signed a form saying they can talk directly to us and that that we're able to make decisions with her. Companies have been very accommodating when it comes to talking with us and with Beth. We include Beth in decisions: does she want a checking account or not; does she want to learn to drive a car; is she interested in moving out on her own. Now, every family is different and you may choose to become your child's legal guardian. But just know it's not a requirement.
Monday, October 22, 2012
31 For 21 - October is More Than Just Ds Awareness Month
At our house, it's also birthday month!!
Beth was born on October 10, 1984. Sharaya was born on October 6, 1986. We always wanted our kids to be 2 years apart, but we weren't figuring on them being just 4 days apart. Beth was more than two weeks late; my original due date, the one the doctor gave me the first time I saw him was September 21. Then further along in the pregnancy, he changed it to September 29. Beth didn't care. She didn't want to come out no matter what date it was!! She was an emergency c-section because my water broke yet she hadn't moved into the birth canal.
Two years later I chose to try a vaginal birth (sorry if that's too much information!) Sharaya tried to come out. I was in labor for a week, every night from midnight to 8 AM. I'm not exaggerating. At 8 AM, the contractions would stop. I'd spend my day taking care of Beth, then as I was crawling back into bed, they'd start again. A week later the contractions continued throughout the day, but my water never broke. After 31 straight hours of labor, they took her by c-section. Looking back now, Chuck and I realize they never broke my water. Why didn't they break my water?!?
Anyway, with two birthdays so close together, we celebrated them together. Two little girls, one party.
Beth was born on October 10, 1984. Sharaya was born on October 6, 1986. We always wanted our kids to be 2 years apart, but we weren't figuring on them being just 4 days apart. Beth was more than two weeks late; my original due date, the one the doctor gave me the first time I saw him was September 21. Then further along in the pregnancy, he changed it to September 29. Beth didn't care. She didn't want to come out no matter what date it was!! She was an emergency c-section because my water broke yet she hadn't moved into the birth canal.
Two years later I chose to try a vaginal birth (sorry if that's too much information!) Sharaya tried to come out. I was in labor for a week, every night from midnight to 8 AM. I'm not exaggerating. At 8 AM, the contractions would stop. I'd spend my day taking care of Beth, then as I was crawling back into bed, they'd start again. A week later the contractions continued throughout the day, but my water never broke. After 31 straight hours of labor, they took her by c-section. Looking back now, Chuck and I realize they never broke my water. Why didn't they break my water?!?
Anyway, with two birthdays so close together, we celebrated them together. Two little girls, one party.
But then one day Sharaya came to us and asked if they could have separate parties. I think she was turning 10. It was definitely time. Why didn't we think of it first? We're the parents, we should have thought of that! (Sharaya has always been one of the sensible ones in the family.) So that year we began having two parties. Two older girls. Two cakes.
On October 6, we'd buy a cake and invite people over. Then 4 days later, we'd buy a different cake and invite different people over.
There were big parties.
And there were small parties.
One year Beth got her ears pierced. She wore the earrings for the recommended 6 weeks but when she changed them, the holes closed over almost instantly. I think she was without earrings for 24 hours, but the holes were already closed. She got them pierced again about 6 months later and the same thing happened. She decided she didn't want them done again.
This year they turned 28 and 26 and we didn't even take pictures. We're becoming more relaxed as they (we!) get older. :) But we do love October in our house!
Sunday, October 21, 2012
31 For 21 - Double Prizes!!
Beth took part in the Special Olympics bowling tournament today.
She brought home a 4th place ribbon.
(Thank you Diana for the pictures!)
And Diana bought a bike!
She rode around the neighborhood then rode out to her old elementary school.
Now that she's working 3 jobs, she's glad to have some transportation!
Saturday, October 20, 2012
31 For 21 - The World Kept Going
When Beth was born, my hospital room was a constant buzz of activity, as I'm sure are all rooms of parents who've just given birth to a baby with special needs.
That diagnoses consumed me. It was everything and it was all that mattered.
But the world kept going. Outside that hospital room, construction was going on in the city. Lawyers were walking into their offices preparing for their next case. Parents were at home putting one more load of laundry into the dryer. Police officers were writing tickets.
But looking back now, it seemed that in that hospital room, the world had stopped. For 4 days my life was completely saturated with Down Syndrome. The outside world seemed like a foreign place to me.
But once we got home, the world seemed to come into focus again. We picked back up where we had left off. Only now we had a gorgeous baby girl to join us.
----------------------------------------------
One of the things I wrote in Beth's baby book was a list of movies and TV shows that were popular at the time she was born.
On TV there was:
Hill Street Blues
St. Elsewhere
The Cosby Show
Family Ties
Movies:
Ghostbusters
The Woman in Red
Revenge of the Nerds
Star Trek 3
Indiana Jones and the Temple of Doom
The world kept going.
That diagnoses consumed me. It was everything and it was all that mattered.
But the world kept going. Outside that hospital room, construction was going on in the city. Lawyers were walking into their offices preparing for their next case. Parents were at home putting one more load of laundry into the dryer. Police officers were writing tickets.
But looking back now, it seemed that in that hospital room, the world had stopped. For 4 days my life was completely saturated with Down Syndrome. The outside world seemed like a foreign place to me.
But once we got home, the world seemed to come into focus again. We picked back up where we had left off. Only now we had a gorgeous baby girl to join us.
----------------------------------------------
One of the things I wrote in Beth's baby book was a list of movies and TV shows that were popular at the time she was born.
On TV there was:
Hill Street Blues
St. Elsewhere
The Cosby Show
Family Ties
Movies:
Ghostbusters
The Woman in Red
Revenge of the Nerds
Star Trek 3
Indiana Jones and the Temple of Doom
The world kept going.
Thursday, October 18, 2012
31 For 21 - Eeewwww
It's Thursday. Ryan and Sharaya come over for dinner every Thursday.
After we eat we usually play games. Scrabble. Uno.
Tonight we played Uno. Laughing. Drinking hot tea.
Laughing some more.
I noticed Allison was very quiet.
I got up to see what she was doing.
I found her in the bathroom.
She was brushing her teeth.
With my toothbrush.
After we eat we usually play games. Scrabble. Uno.
Tonight we played Uno. Laughing. Drinking hot tea.
Laughing some more.
I noticed Allison was very quiet.
I got up to see what she was doing.
I found her in the bathroom.
She was brushing her teeth.
With my toothbrush.
Wednesday, October 17, 2012
31 For 21 - Is It Just Me?
I know I missed a day. I started feeling better then, BAM! It hit me again. I slept in Chuck's recliner last night, part sitting up, part reclining just so I could breathe. Laying down caused my nose to instantly plug up. Ugh. Last week Chuck slept in his recliner for the same reason. He's better thank goodness, but now Beth, Diana and I are fighting it. The guy at Bartells said 3 of their employees were out sick. The lady at Safeway said she's been out sick and her whole family has it. It seems to always happen this time of year. The warm temps change over to cold and windy.
Oh well. That's not really what I wanted to write about.
I guess October is also Cancer awareness month. Is anyone else seeing pink everywhere? Chuck and I were watching the Charger football game and some of the players were wearing pink shoes. They had small, pink ribbons painted on their helmets.
There are commercials and billboards. Busses and radio promotions. All about cancer awareness. I picked up Beth's prescription this week and the childproof cap... was pink. Pink is everywhere! And it awesome! Such creativity to bring awareness to a difficult, way too common disease. (Is cancer considered a disease? I don't know and I'm so afraid of offending people.)
Anyway, what I'm curious about is why haven't I seen any Down Syndrome awareness spots on TV? Where are the radio spots for the Buddy Walks? Why hasn't the NDSS promoted Down Syndrome? Why haven't we seen more blue and yellow ribbons around this month?
At the Puget Sound Buddy Walk this year they told us that two years ago they raised $5000. Last year they raised $11,000. This year, they raised over $30,000!! That's huge! It's exciting that the money will go toward... you know, I have no idea what the money goes toward. Maybe I should look into it.
Now, if you've made it this far and are still reading, let me just say, I'm not angry that I haven't seen blue and yellow ribbons. I'm just curious why? I haven't contributed financially to the NDSS or even to the Buddy Walk so I know I don't get a say in where the money should go. I guess, for the first time, I'm just aware that Down Syndrome awareness month doesn't seem to be publicized outside of the Down Syndrome community. (Am I just missing it?)
Personally, I don't feel that my blogging every day is bringing awareness because I think about 97% of the people that read my blog have children or siblings that have Down Syndrome. They're already aware.
Maybe I need to start posting more on facebook, where most of my friends aren't aware. Maybe I need to hang blue and yellow curling ribbon from my rear view mirror. Maybe I need to step up.
I'm excited to see so much pink. A co-worker of Chuck's just lost her battle with cancer. I followed her blog until last year when she was given the 'all-clear' from her doctor. Then, it returned. She was on vacation in Hawaii last week when she was rushed to the hospital. They flew her home just in time for her to say goodbye to her family. It's heartbreaking. I wish there were more pink ribbons and lids and helmets!
I also wish there were more blue and yellow...
Oh well. That's not really what I wanted to write about.
I guess October is also Cancer awareness month. Is anyone else seeing pink everywhere? Chuck and I were watching the Charger football game and some of the players were wearing pink shoes. They had small, pink ribbons painted on their helmets.
There are commercials and billboards. Busses and radio promotions. All about cancer awareness. I picked up Beth's prescription this week and the childproof cap... was pink. Pink is everywhere! And it awesome! Such creativity to bring awareness to a difficult, way too common disease. (Is cancer considered a disease? I don't know and I'm so afraid of offending people.)
Anyway, what I'm curious about is why haven't I seen any Down Syndrome awareness spots on TV? Where are the radio spots for the Buddy Walks? Why hasn't the NDSS promoted Down Syndrome? Why haven't we seen more blue and yellow ribbons around this month?
At the Puget Sound Buddy Walk this year they told us that two years ago they raised $5000. Last year they raised $11,000. This year, they raised over $30,000!! That's huge! It's exciting that the money will go toward... you know, I have no idea what the money goes toward. Maybe I should look into it.
Now, if you've made it this far and are still reading, let me just say, I'm not angry that I haven't seen blue and yellow ribbons. I'm just curious why? I haven't contributed financially to the NDSS or even to the Buddy Walk so I know I don't get a say in where the money should go. I guess, for the first time, I'm just aware that Down Syndrome awareness month doesn't seem to be publicized outside of the Down Syndrome community. (Am I just missing it?)
Personally, I don't feel that my blogging every day is bringing awareness because I think about 97% of the people that read my blog have children or siblings that have Down Syndrome. They're already aware.
Maybe I need to start posting more on facebook, where most of my friends aren't aware. Maybe I need to hang blue and yellow curling ribbon from my rear view mirror. Maybe I need to step up.
I'm excited to see so much pink. A co-worker of Chuck's just lost her battle with cancer. I followed her blog until last year when she was given the 'all-clear' from her doctor. Then, it returned. She was on vacation in Hawaii last week when she was rushed to the hospital. They flew her home just in time for her to say goodbye to her family. It's heartbreaking. I wish there were more pink ribbons and lids and helmets!
I also wish there were more blue and yellow...
Monday, October 15, 2012
31 For 21 - Still Not Feeling Well
I'm still not feeling well. I took a shower and it wiped me out.
I'll try again tomorrow.
I'll try again tomorrow.
Sunday, October 14, 2012
31 For 21 - Cheating
I'm sick. I haven't said it out loud hoping it wouldn't really happen. But my throat is sore, I have a headache, I feel like I might have a fever.
Chuck has been sick for 3 days now. I think he shared it with me.
Thanks dear.
There, I've officially posted for today. :)
Chuck has been sick for 3 days now. I think he shared it with me.
Thanks dear.
There, I've officially posted for today. :)
Saturday, October 13, 2012
31 For 21 - She Won't Follow Directions
Well, I spoke with K today about not coaching Beth and just letting her do it on her own today. I said that she can get flustered when she's the center of attention and her score last week was only 35. K hadn't realized that and agreed to just watch today. He cheered for her and I think gave her a high 5 once. Talking to him definitely wasn't as hard as I thought it was gonna be.
But she kept looking back at K whenever it was her turn to bowl, like she was hoping he'd coach her so I asked her if she wanted him to and she said no. Okay.
She did okay with her new wrist guide. She kept adjusting it and I think it made her feel like a professional bowler. :) Unfortunately her score didn't reflect that.
She tends to stand so far back when she throws, today she began pushing her foot against the score table! About 4-5 feet behind the lane! I saw this little plastic sign on the table and I tried to explain to her how it was easier for me to knock it down when I was closer to it. I told her that she needed to go all the way to the line before she threw her ball. She did it one time.
Then it was back to standing so far back that her ball would land with a loud bang on the floor, instead of the lane. All the things K was telling her last week, stand close to the line; keep your arm straight; point your thumb toward the pins; she would do one time, then go back to her old ways. She has one of the lowest scores of all the bowlers and there must be close to 75 on the team.
I know it's not about winning, but she gets so disappointed when she throws a gutter ball or only knocks down a few pins.
But she won't. follow. directions.
But she kept looking back at K whenever it was her turn to bowl, like she was hoping he'd coach her so I asked her if she wanted him to and she said no. Okay.
She did okay with her new wrist guide. She kept adjusting it and I think it made her feel like a professional bowler. :) Unfortunately her score didn't reflect that.
She tends to stand so far back when she throws, today she began pushing her foot against the score table! About 4-5 feet behind the lane! I saw this little plastic sign on the table and I tried to explain to her how it was easier for me to knock it down when I was closer to it. I told her that she needed to go all the way to the line before she threw her ball. She did it one time.
Then it was back to standing so far back that her ball would land with a loud bang on the floor, instead of the lane. All the things K was telling her last week, stand close to the line; keep your arm straight; point your thumb toward the pins; she would do one time, then go back to her old ways. She has one of the lowest scores of all the bowlers and there must be close to 75 on the team.
I know it's not about winning, but she gets so disappointed when she throws a gutter ball or only knocks down a few pins.
But she won't. follow. directions.
Friday, October 12, 2012
31 For 21 - TGIF
Oh, thank goodness it's Friday. You don't know how happy I am that it's Friday!
Tonight we get to be home. Chuck caught a cold this week. Sore throat, stuffy nose, coughing, wheezing. He's been sleeping in his recliner the last couple of nights.
I worked 40 hours this week. I haven't done that in a long time.
Diana got hired at an infant center. They care for kids ages 3 months to 1 year. Now she'll be working 3 jobs.
Tomorrow Beth goes bowling with Special Olympics. They are gearing up for their tournament at the end of this month. Last week one of the dads was 'coaching' Beth and with each throw of the ball... she did worse.
Her final score of the game was 35. I am gonna have to tell the dad tomorrow not to talk to her. I know he was just trying to help but Beth doesn't respond well to constant instruction. Give her one or two pointers, then leave her alone.
I appreciate what he was trying to do, but tomorrow I have to ask him not to do it.
Gulp. Not looking forward to that.
Tonight we get to be home. Chuck caught a cold this week. Sore throat, stuffy nose, coughing, wheezing. He's been sleeping in his recliner the last couple of nights.
I worked 40 hours this week. I haven't done that in a long time.
Diana got hired at an infant center. They care for kids ages 3 months to 1 year. Now she'll be working 3 jobs.
Tomorrow Beth goes bowling with Special Olympics. They are gearing up for their tournament at the end of this month. Last week one of the dads was 'coaching' Beth and with each throw of the ball... she did worse.
Her final score of the game was 35. I am gonna have to tell the dad tomorrow not to talk to her. I know he was just trying to help but Beth doesn't respond well to constant instruction. Give her one or two pointers, then leave her alone.
I appreciate what he was trying to do, but tomorrow I have to ask him not to do it.
Gulp. Not looking forward to that.
Thursday, October 11, 2012
31 For 21 - Twenty Eight
After cake and presents she went downstairs to watch TV.
Allie and I went down to take her picture!
Happy, Happy Birthday Beth!!
(We want to thank all of you for your birthday wishes!)
Wednesday, October 10, 2012
31 For 21 - 10/10
Twenty seven years ago we celebrated Beth's very 1st birthday.
This is what I wrote in her baby book.
We celebrated your birthday tonight, October 10, 1985. One year ago tonight, I gave birth to a gorgeous baby girl.
Miss Burkhart (from mommy's work) came to the car and gave you a birthday kiss this afternoon.
This weekend you mommy and daddy are going to Los Angeles to see grandma Mary Ann. She called tonight and you told her, "Aahhgg!!" I think she was impressed!
You sat on Uncle Joe's chest for a long time chewing on his watch. Auntie Debbie sat on the floor with you and she read to you out of your prayer book.
Uncle Kenny gave you a kiss before he left and he even fed you some of his ice cream from his own spoon! Uncle Ken has come a long way!
So many people love you Beth! After everybody left we put you to bed and you fell right to sleep.
Happy first birthday!!
Tuesday, October 9, 2012
31 For 21 - Chatterbox
It's been a very looong day.
I usually have Wednesdays off but I'm filling in tomorrow for a friend who is on vacation.
Then Chuck and I have a meeting tomorrow after work.
So tomorrow is going to be a very looong day.
Tomorrow is also October 10th.
October 10th, 1984 I gave birth to my very first child.
A very scared mom-to-be.
An emergency c-section.
A very beautiful, sweet baby girl.
Beth hasn't stopped talking today.
Every word has been about her birthday.
We plan to celebrate her birthday on Thursday.
But tomorrow. Tomorrow Beth is going to be the star!!
I usually have Wednesdays off but I'm filling in tomorrow for a friend who is on vacation.
Then Chuck and I have a meeting tomorrow after work.
So tomorrow is going to be a very looong day.
Tomorrow is also October 10th.
October 10th, 1984 I gave birth to my very first child.
A very scared mom-to-be.
An emergency c-section.
A very beautiful, sweet baby girl.
Beth hasn't stopped talking today.
Every word has been about her birthday.
We plan to celebrate her birthday on Thursday.
But tomorrow. Tomorrow Beth is going to be the star!!
Monday, October 8, 2012
31 For 21 - Unsuccessful
I tried making an appointment for Beth's thyroid treatment today during my lunch hour. I wasn't successful.
I work about 4 minutes from home so I always go home for lunch. Today I stopped at the grocery store on my way home and after I put away the groceries, that's when I remembered I needed to call the doctor!
I was on hold for almost 10 minutes and needed to go back to work so I hung up. Two minutes later they called me. It's a little complicated, this whole procedure thing.
Beth has Graves Disease and is on medication to help regulate it. Except her thyroid speeds up and then slows down so they keep adjusting her meds. It's causing her to gain weight, she sometimes seems depressed... There is a treatment that will kill her thyroid, then she'll take a hormone pill that will do the work of the thyroid. But they'll be able to figure out that dosage fairly easily and she'll just take that amount for the rest of her life.
For the treatment, she'll be taking radiation in pill form and will have to be quarantined for 3 days. The pill will be in a sealed jar and she'll go into a room by herself, unscrew the lid and take the pill. Then we come home and she goes downstairs. And she stays downstairs except to go to the bathroom. Beth's apartment is in the daylight basement and both bathrooms are upstairs. We aren't allowed to use the bathroom she uses, I think that will be the toughest part. I don't expect this to be very hard, but it's gonna take a lot of planning and prep work.
Anyway Beth's doctor wrote something unusual on her chart and the staff won't schedule the appointment until he clarifies it.
He's on vacation this week.
I work about 4 minutes from home so I always go home for lunch. Today I stopped at the grocery store on my way home and after I put away the groceries, that's when I remembered I needed to call the doctor!
I was on hold for almost 10 minutes and needed to go back to work so I hung up. Two minutes later they called me. It's a little complicated, this whole procedure thing.
Beth has Graves Disease and is on medication to help regulate it. Except her thyroid speeds up and then slows down so they keep adjusting her meds. It's causing her to gain weight, she sometimes seems depressed... There is a treatment that will kill her thyroid, then she'll take a hormone pill that will do the work of the thyroid. But they'll be able to figure out that dosage fairly easily and she'll just take that amount for the rest of her life.
For the treatment, she'll be taking radiation in pill form and will have to be quarantined for 3 days. The pill will be in a sealed jar and she'll go into a room by herself, unscrew the lid and take the pill. Then we come home and she goes downstairs. And she stays downstairs except to go to the bathroom. Beth's apartment is in the daylight basement and both bathrooms are upstairs. We aren't allowed to use the bathroom she uses, I think that will be the toughest part. I don't expect this to be very hard, but it's gonna take a lot of planning and prep work.
Anyway Beth's doctor wrote something unusual on her chart and the staff won't schedule the appointment until he clarifies it.
He's on vacation this week.
Sunday, October 7, 2012
31 for 21 - It Was Our First Time
Today was the Puget Sound Buddy walk! I think it's been held here for 16 years and this was our first time attending. We didn't know what to expect, certainly didn't expect all those people! It was fun! So many yellow shirts. So many more almond eyes.
I didn't see many adults with Down Syndrome. We didn't have a team or collect money this year. I wonder if it would be more fun if we did? I mean, we did have fun, but it was just the 4 of us. Chuck and Diana met two families who actually lived here in Edmonds; part of the time Beth and I sat by the stage and listened to the speakers.
We were in downtown Seattle, right under the Space Needle. This picture is about 20 years old, but it will give you an idea of where we walked. If you follow down the Space Needle (don't look to the right of the base, but below the base) there is a carousel, roller coaster and a few other rides. Well those aren't there anymore and that's where we all met. We then walked out toward the fountain (to the right of the stadium.) We walked around the fountain, following the tree line, then around the actual fountain and back to the start.
I didn't see many adults with Down Syndrome. We didn't have a team or collect money this year. I wonder if it would be more fun if we did? I mean, we did have fun, but it was just the 4 of us. Chuck and Diana met two families who actually lived here in Edmonds; part of the time Beth and I sat by the stage and listened to the speakers.
We were in downtown Seattle, right under the Space Needle. This picture is about 20 years old, but it will give you an idea of where we walked. If you follow down the Space Needle (don't look to the right of the base, but below the base) there is a carousel, roller coaster and a few other rides. Well those aren't there anymore and that's where we all met. We then walked out toward the fountain (to the right of the stadium.) We walked around the fountain, following the tree line, then around the actual fountain and back to the start.
Everyone gathering to begin walking.
There were so many people!
One of the speakers was Eliza. She went through all the hoops to get into college, then was told she couldn't attend. They told her college wasn't right for her. So her family moved to Washington State and now she's enrolled in college! Her basic message was "Believe in yourself! Don't give up on your dreams!"
After her speech, we got up to go sit back with Chuck and Diana. All of a sudden, they started playing The Climb by Miley Cyrus. You bet Beth made a u-turn, sat back down and began to sing and rock out to the music!!
Saturday, October 6, 2012
31 For 21 - A Novelty
Beth is a shy, introverted adult. She doesn't talk much, doesn't make a splash. She doesn't 'light up a room' when she enters. She doesn't have many any friends. But she did make an impact on two people. Two people who I always thought were cold, harsh and selfish.
When Beth was born, people came out of the woodwork to see her. My hospital room was always packed with people. My doctor relaxed the rules and allowed as many people in the room as possible. Beth was brought in a-n-y-t-i-m-e someone came. I didn't realize this wasn't the norm until day 3, when my dad came to visit and Beth wasn't allowed in my room. The nurse said my doctor had wanted to see how the family treated Beth. When he saw how much everyone loved her, he knew she would be fine and put the restrictions back in place. Sneaky doctor. :)
On the day we went home, our house was packed with people. We lived in a small, one bedroom apartment but everyone was there. Even our apartment manager came up to see how we were!
When Beth was born, people came out of the woodwork to see her. My hospital room was always packed with people. My doctor relaxed the rules and allowed as many people in the room as possible. Beth was brought in a-n-y-t-i-m-e someone came. I didn't realize this wasn't the norm until day 3, when my dad came to visit and Beth wasn't allowed in my room. The nurse said my doctor had wanted to see how the family treated Beth. When he saw how much everyone loved her, he knew she would be fine and put the restrictions back in place. Sneaky doctor. :)
On the day we went home, our house was packed with people. We lived in a small, one bedroom apartment but everyone was there. Even our apartment manager came up to see how we were!
In our church, we believe a person has to make a decision to accept Christ before they can be water baptized, so we dedicate babies. Usually it's the parents and siblings if there are any. When Beth was born, the whole family showed up!!
But the people who surprised me most were my grandma and grandpa on my moms side. Her dad and step mom. My grandma didn't have kids. She didn't want kids. She didn't like kids. When we'd visit them all we heard was, "Don't go into that room. Don't touch that. That's not for you." Their lives were all about themselves and their money.
Until Beth was born.
They came to the hospital. They didn't come to the hospital when our other girls were born and I don't remember them visiting my sisters when their kids were born. Just Beth. They were enamored with her. Just wanted to stare at her. This... this baby who had a condition that they'd only heard about. Now there was one in their family!
They came to her birthday parties and they started coming to other family functions. They'd show up at Christmas, with presents! They sent cards and always stayed in touch. They became more a part of the family and I think they softened a little.
That little baby. That tiny, extra chromosome. Who knew??
Friday, October 5, 2012
31 For 21 - A Very Special Reason
I remember those first few weeks rushing by. Not rushing like, 'Gosh where did the time go?' but like I had fallen in a rushing river. My life jacket kept my head above water, but I was helpless to navigate or decide anything. I could only go where the river took me.
It was like I was in one of those images you see on TV where the person slowly spins in one place while the world around them is moving so fast it's just a complete blur. Everything was moving at warp speed, but I couldn't even form one solid thought. I remember feeling tossed and pushed and pulled.
I couldn't catch my breath.
Thursday, October 4, 2012
31 For 21 - You Make It Look Too Easy
Ryan and Sharaya came over for dinner tonight. They used to come on Wednesdays but Chuck and I lead a home group on Wednesdays now... so now they come on Thursdays.
Brilliant, don't ya think? :)
Today was so busy at work. Every. Single. Moment. was filled with phone calls and emails and questions and errands and... I usually finish up around 4:45 and have cleaned off my desk (can't stand to leave my desk messy overnight!) and am ready to go by 5:00. Not today!! I finally finished a big project at 4:55! More than one co-worker asked if it was a full moon today.
Next week will be busier. Of course. As soon as I agree to blog every single day... isn't that always the way?! :)
Let's see, what else?
Ummm.... Thinking...
Sorry guys. My mind is just fried. How about just some pictures tonight? When we were in Canada last week, Chuck and I tried taking some 'facebook photos' of ourselves. You know the kind where you hold the phone at arms length in front of you? Yea.
Brilliant, don't ya think? :)
Today was so busy at work. Every. Single. Moment. was filled with phone calls and emails and questions and errands and... I usually finish up around 4:45 and have cleaned off my desk (can't stand to leave my desk messy overnight!) and am ready to go by 5:00. Not today!! I finally finished a big project at 4:55! More than one co-worker asked if it was a full moon today.
Next week will be busier. Of course. As soon as I agree to blog every single day... isn't that always the way?! :)
Let's see, what else?
Ummm.... Thinking...
Sorry guys. My mind is just fried. How about just some pictures tonight? When we were in Canada last week, Chuck and I tried taking some 'facebook photos' of ourselves. You know the kind where you hold the phone at arms length in front of you? Yea.
Our problem was, we weren't using our phones, they're SO old they don't take good photos. No internet, nothin'. We only had my camera! That thing is heavy! I held it while Chuck pushed the button. I'm surprised they came out as clear as they did! We're not sure where to look or when to smile! We cut off the scenery, had the glare of the sun. You guys make this look too easy!!
Wednesday, October 3, 2012
31 For 21 - Makes Me Nervous
I guess I'm afraid to fail.
October is such a busy month for us and already I've missed two days. I guess I should at least try though. Even though we have two kids at home, they are grown. I only work 31 hours a week. Maybe I could do this. :)
On a very positive note, Beth talked to her DART driver this morning! This is a HUGE thing! When the driver asks how she's doing, Beth usually just answers with a grunt, "Fine."
Today, before she even stepped off the porch, I heard her said, "We're back from vacation."
I was shocked! I watched as they walked across the driveway to the bus. I couldn't hear but I saw Beth say something else to her, and the driver responded. Right before Beth stepped onto the bus she looked at the driver...
I'm sorry, did you get that?? She looked at the driver and said something else!
Oh my gosh! I ran into Diana's room, "Guess what just happened!!" This is very cool. :)
October is such a busy month for us and already I've missed two days. I guess I should at least try though. Even though we have two kids at home, they are grown. I only work 31 hours a week. Maybe I could do this. :)
On a very positive note, Beth talked to her DART driver this morning! This is a HUGE thing! When the driver asks how she's doing, Beth usually just answers with a grunt, "Fine."
Today, before she even stepped off the porch, I heard her said, "We're back from vacation."
I was shocked! I watched as they walked across the driveway to the bus. I couldn't hear but I saw Beth say something else to her, and the driver responded. Right before Beth stepped onto the bus she looked at the driver...
I'm sorry, did you get that?? She looked at the driver and said something else!
Oh my gosh! I ran into Diana's room, "Guess what just happened!!" This is very cool. :)
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