31 For 21 - If I Had A Chance To Say One Thing

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?

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!  

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.

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!!"

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.

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!'

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!

 

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.

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.

 

 

 

 

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!

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!