Saturday, August 31, 2013

She Never Speaks

August 31st. My mom would have been 78 today. She passed away in 2005 and I still miss her every day.

I wish I could call her and ask her things. Tell her I'm sorry for not understanding all the things she tried to teach me but I just never got. Too often now-a-days I find myself thinking, 'So this is what my mom was trying to tell me!' Now that my kids are young adults, I'm understanding a lot more! :)

I've been having dreams about her lately. Probably the time of year though. But something interesting, in my dreams she never speaks. She's just there.

Me and my mom around 1967. 
She had gone back to school to get her high school diploma.
She was so much stronger than I gave her credit for.

Wednesday, August 28, 2013

Wall Flower

I've written this post in my head a hundred times, sort of nervous about actually posting it. I don't believe it's true... or maybe I just don't want to believe it's true.

Beth has been a part of All Aboard for gosh, 7 years. She's taken classes, gone to events and the other day I went on their web site and clicked on the link for Pictures. You know, she wasn't in a single photo. Not one of her in the art class, not one of her at the prom, not a candid photo, nothing.

She's a wall flower in the world of wall flowers.

I know it's her personality to be shy and introverted, but when even the special needs community doesn't embrace your child...

At the picnic last week, no one came up to talk to her. She went up to a few people, they'd give her a quick hug and that was it. She'd turn around and come right back to sit with me. She tried to give one of the leaders a hug and every time she'd touch her arm to get her attention, the leader would turn away. I'm glad Beth was persistent. She finally got a quick hug around the 4th time. I felt awful.

And that's also a problem. I felt awful, but it doesn't seem to bother Beth at all. She was happy for the hug and came right back over to me. But this momma's heart was aching.

I've been reading on Facebook recently about other adults with Down Syndrome who are going off to college, running their own businesses, standing up for their independence in court, having surgery so they can continue their passion of dancing. I'm truly happy for them. I'm excited to read about their goals and achievements. They're making strides and opening doors for younger kids to achieve their dreams one day.

But it's hard to read about those kids when Beth is just content to watch TV. I want more for her. But I also have to remember it's not about what I want.

One regret I have is not finding out what Beth was good at growing up. Our other girls figured it out on their own, taking classes in school and deciding what they liked or didn't like. For Sharaya it was photography. Diana has a variety of things she's interested in and is still figuring out what she wants to do with the rest of her life. But she's doing it. Beth never really expressed an interest in things like they did. I feel bad for not exploring that more or forcing her to try new things. I know it's not too late, but some days I feel like it is.

When Beth was in school, I would occasionally send notes to the teacher asking for this students or that students phone number so maybe we could arrange a time to get the girls together, but nothing ever came of it. Even if the teacher wasn't allowed give me their info and instead gave my info to the other parent, they never called or contacted us.

And now that Beth is an adult, people still don't call her or invite her out. She sits in her room watching TV and writing. When we do take her to dances or picnics, she sits with us or she sits alone.

Just like every other social group, the world of special needs has their cliques, their popular kids, their levels of hierarchy. And even in that, Beth is one of the unpopular kids.

Monday, August 26, 2013

We Don't Want To Be Left Out!

With everyone talking about being back at school or getting ready to go back to school or what it will be like when it's time for them to start school, we were feeling a little left out. So, I thought we'd join the party. :) Here are some first day of school pictures. My girls still talk about how much they loved the new backpacks and school supplies. They'd lay everything out, crossing it off the list, looking at each others stuff.

Seems like a million years ago.



Friday, August 23, 2013

The Student Becomes the Teacher

Beth has been riding the DART bus now for almost 9 years. Sometimes it's 8-10 times a week, she's on and off the bus. But I've never riden the DART bus. Until today.

Chuck was driving for Starline and needed to take the van into work which left us without a reliable car to get us to the picnic. So a few days ago he suggested I just ride the bus with Beth. Of course! Why didn't I think of that? So I called and made the reservation.

To be honest I was a little nervous this morning. Chuck has taken Community Transit to work for years. Sharaya and Diana rode CT back and forth to high school. (They got discounted bus passes because our district doesn't have school buses for the high school.) And I think I've been on a transit bus 3 times in my life.

So I was asking Beth how much money I needed; was I supposed to give the money to the driver or do I put it in a machine; is there a certain seat she likes to sit in (there was). :)

Thanks Google!

The bus became crowded and was very loud. We sat right next to the mechanism that allows for wheelchairs and it rattled and banged at every bump in the road. The driver had a fan on and that was loud. The driver also had GPS but I don't know why because they rarely followed it. We made I don't know how many u-turns. At one point in the middle of another u-turn there was a blind man outside with his dog and we had to wait for him to get his dog out of the road. After a few minutes, a rider who was in a wheel chair began to cry and yell, "Stop it!!" I guess she was visually impaired and had heard other riders talking, heard them say the word blind and thought they were talking about her. They tried to convince her they weren't talking about her, apologized to her and asked if she forgave them. She said yes, and that was that. No more tears, the issue was over.

The picnic was fun. Lots of games and prizes, although it was colder than we would have liked. There was ring toss, bean bag toss, lawn darts... They barbequed hamburgers and hotdogs and asked everyone to bring food. Last night Beth and I made chocolate chip cookies to share. There were a lot of people there!





Our bus came early because Beth has to work tonight. We finished eating then got up to wait for it. I was so afraid the driver wouldn't see us and end up leaving. I didn't want to be stuck at a park 20 miles from home. The first driver let us all off a ways from the picnic area and I didn't want the second driver to go there to wait for us. But the driver came right to the covered area and got us. The second bus was very quiet and we got home pretty fast. I should have taken a cue from Beth. She wasn't worried at all. 

Sunday, August 18, 2013

Then And Now - The Photo That Started It All

The girls gave us a frame filled with photos for our Anniversary.

But not just any group of photos.

They got together and recreated pictures from their childhoods.

Beth and Sharaya
1989 - 2013

1988 - 2013

1992 - 2013

Sharaya and Beth
1989 - 2013

There were even more than this!
They tried to match every picture, right down to the clothes they were wearing!

But the picture that started it all, I believe, was this one -
Me and my sisters around 1963

 I took that picture of my girls about 30 years later.

And now, forever more I'll have:


Wednesday, August 14, 2013

One Day

One day we woke up, put on a wedding gown and tuxedo and said vows to the person we love.

This day, 31 years later, we put on jeans and t shirts and took our van to the shop. We walked around the mall and went out to lunch. Eight hours and $500 later, we drove home.

Not as exciting as that first day, but special none the less. :)

Sunday, August 11, 2013

Didn't Think I'd Live to See the Day

It's been a slow week for us.

You've heard that 'dog bites man' isn't news, but man bites dog is news?


This morning Beth came upstairs to get ready for church. She ate breakfast (Cheerios with a banana) brushed her teeth, then went back down to finish getting dressed.

She came up and sat at the table while Chuck, Diana and I continued getting ready. After a few minutes she knocked on the door to the little bathroom. "Dad? It's 8:06!"

Went down the hallway to our bedroom. "Mom? It's 8:06!"

Knocked on Diana's door. "Chickenbutt! It's 8:06!"

Basically, SHE was telling US to "Hurry up!!"

Now that's news!!! :)

Tuesday, August 6, 2013

How Do You Know Where to Draw the Line?

My mom used to always say that the hardest part about raising kids was when they turned 18. At the time I didn't believe her because I thought the hardest part was the part I was in that day!

But now that my kids are grown, I know exactly what she means. For almost 20 years you protect and nurture and teach and discipline and love and coax and support and legally overnight, you have to let them fail. You have to stand back and watch them make poor choices, watch them suffer the consequences, watch them... sometimes... fail. It's a horrible conflict of interest. It goes against everything you've been doing, everything you known.

You can advise. You can offer encouragement. You can give your opinion. But ultimately, you have no power. The choice is 100% theirs.

Beth is obese. You already knew that. We've slowly been making changes in our lifestyle by cooking less food, trying to use smaller plates, etc. Chuck has lost almost 100 pounds the last two years. There's still a lot of work to be done, but we do celebrate how far we've come. But Beth hasn't lost any. In fact, she's gained weight the last two years.

She had a doctors appointment last month and after talking to Beth for a few minutes, the doctor looked at me and asked me if I was able to get her to eat healthy food. I hesitated for a minute and said that she was 28 and asked him if his parents were able to get him to eat healthy when he was 28.

He smiled. Then he laughed. "My parents couldn't get me to eat healthy as a kid!"

Her job coach sent me as email saying Beth needs to drink water while she's at work. It's hot and she needs to stay hydrated. We talked to her about it and suggested she bring her Disney travel mug to work. She can fill it with water there. I think she did that twice. She occasionally brings water but usually likes Sprite or Diet Root Beer instead. They even bought her a clear cup at Starbucks! Complete with straw! I think it was a hint.

Sometimes when we're dishing up for dinner, I'll do Beth's plate. She tends to put on too much and ends up eating every last bite. (I sometimes read, in awe, your posts about not being able to get your kids to eat. That was never an issue with Beth.) I suggests different foods for her to buy when we're at the grocery store. I always ask her to dance or exercise at some point during the day. I really do try. But she's 28 years old.

Where do I draw the line between continuing to treat her like a 7 year old and letting her be an adult and make poor choices, like we all do at times!!

Some people have said that I need to step in if her choices are causing harm, like the over eating. And sometimes I do. But I've been parenting for 28 years and sometimes I just want a break. I don't wanna parent every moment of every day anymore.

Then the other day I read the Jenny Hatch story. Have you heard about it? Jenny is 29, has Down Syndrome and wanted to live with her friends, a married couple who own the thrift store where she works. Her mom and step dad became her guardians so they could decide where she lives. Her mom just felt the group home was a safer choice for her. So they went to court and Jenny won. Her friends will now have guardianship and she will live with them. Only time will tell if Jenny's mom was right.

I felt sorry for Jenny's mom. We've all been there, 'I know my child better than anyone else...' doctors, teachers, friends? And now she's had her guardianship taken away. I can only imagine how devastated she is.

On the other hand, if Beth was so determined to live with them that she'd take me to court?? I think she would be okay living with friends. I would have encouraged Beth to live at the group home, but if Beth said she really wanted to live with her friends, I would have let her. She's an adult!

When that 18th birthday rolls around, everything changes. Your relationship, your influence, your authority. But when that child has special needs, it's hard to know where to completely let go, where to just guide, and where you'll still have to have authority. It's hard to know where to draw the line.

Sunday, August 4, 2013


Seattle just went 35 days with no rain. That's a record around here! I can't say we had 35 days of sun because there were a few cloudy days, but dry days?? That's unheard of. The news channels reported about it, the weathermen had charts and graphs... it was a big deal.

So you can probably guess what happened on day 36. Yep, rain. Lots of rain, actually. And thunder. And lightning.

Know what else happened on the 36th day? Our towns Outdoor Movie Night. We've been looking forward to this for weeks!! Lawn chairs out under the stars, blankets, hot drinks, snacks... but it wasn't to be.

Well they did have it, thankfully they moved it inside, to the gym. We all sat around in our lawn chairs, we still pulled our blankets up, had our hot drinks. We usually don't do things like this. We're homebodies. So, even though it wasn't the night we were expecting (isn't disappointment the result of our expectations not being met?) we still had a great time.

Can you guess what movie we watched?





 And by the way, day 37? Blue skies and sunshine!!