Having Down Syndrome Doesn't Matter

When Beth was born we were told all kinds of things, some were true but others turned out to be false. One thing was that if you allow her to do it in your home (excessive hugging or whatever) she'll think it's okay to do it in public. Which, turns out is true for any child not just someone with Down Syndrome.

We were told she'd never have long hair. That one was not true.

Something else they told us at the hospital was that Beth was going to be more like the people in our family, rather than other people who have Down Syndrome. 

She'll have our traits and characteristics and habits and be more like us; Down Syndrome will tell us the shape of her eyes, but not decide her personality. That little extra chromosome will dictate the size of her hands but it won't tell us if she'll grow up to be a motivational speaker. Our family unit will dictate her behavior and choices and actions, and for some reason that surprised me. I don't know why, I guess as a 23 year old, brand new mom hearing that diagnosis for the first time I just figured that people with Down Syndrome were all the same. But they're as different from one another as the rest of us!

Beth has developed some good traits and some not so good. Made good choices and bad choices. Which again, can be said of any one of us! When it comes to developing habits, an extra chromosome doesn't make that much of a difference.

What's It Like To Live With Someone With Down Syndrome?

Like most bloggers I'm sure, I've occasionally asked myself why I blog. Why am I telling you my story? I mean, we're really not that different, we've all experienced pain, we've all felt lonely at times and deep down we all want to be liked. So what sets me apart?

Well, of all my friends, of all the people at my church (1500 each Sunday) my family is the only one who has a child with Down Syndrome. I know people who have kids with Down Syndrome, but in my circle of friends that I see each week and hang out with, I'm the only one. So that's why I write. To share a glimpse into our lives, to open the door and invite others in to see what it's like to live with someone who has special needs.

We've raised 3 daughters, two typical developing and one with Down Syndrome. Over the years I've found myself noticing the different ways they interact with friends, the way they grow and learn. I used to think it would be gigantic things that would separate them, but 30 some years later I can tell you that it's the little things.

 
For example, the other day I was washing the dishes and wanted to clean the cutting board so I asked Beth (she was watching me work) to go into the laundry room and get the bleach and an old scrubber. She brought out the scrubber and then went back in but never came out. I could hear her making noise in there and I thought she was getting it but I hollered in to her, "It's the smaller bottle next to the laundry soap."

Still nothing.

Now, you're probably thinking, 'Maybe she doesn't know what bleach is,' but she's been with me so many times when I've bought it at the grocery store, I've explained to her what it does and I've even shown her how to use it. So I figured of course she'd find it in the laundry room, but she didn't.

In the mean time I'm standing there with the water running, trying not to just go in and get it myself.  It'd be so much faster...

Instead I told her to just bring out a bottle and I'll tell her if it's the right one. She held one up and yep, that was the bleach! "Good job Beth, thanks." I could tell she was proud of herself as she leaned against the counter to finish watching me work. 

Now, if that had been Sharaya or Diana, they would have continued to tell me what happened at work or whatever as they disappeared into the laundry room and our conversation would have continued on as they put the bleach on the counter.

But with Beth, so often our lives stop as everything becomes about reaching the objective, of her processing what's been asked of her and then trying to complete the task. The example I gave may seem like such a small thing, why even make a big deal about it? But for parents who have a child with special needs it's like this every day. Each thing can become a huge event, a monumental task that takes additional time and energy to complete. 

Even something as small as getting the bleach.

Chalk Board Love Notes

We took Beth and Nick to the Olive Garden for Valentines Day. When Chuck put in our name, he told them that the 4 of us were together but we wanted our own tables. We wanted Beth and Nick to have some privacy but we also wanted to be close enough if they needed help with something which they didn't. We've done this before and the wait staff is always so understanding and any place we've gone, they've been able to accommodate us. There was another family sitting between us for most of the time so they really felt like they were alone.

Allie has a chalk board that we use to write notes to each other. I always try to have something on it when she comes over, a little note or a picture. 

When they were here on Sunday Allie drew a random design and after they left I colored it in. Can't wait until she comes over again!

I took Beth to the doctor tonight to get some lab work done before her appointment on Monday. She always does so well.

I hope you all have a blessed weekend.

A Traveling Hodgepodge

Today I'm joining the Wednesday Hodgepodge with From This Side Of The Pond. She posts the questions on Tuesdays and we answer them, then all link up on Wednesdays. I read a few blogs that take part in this and I've always wanted to join! So, here we go!

1. What did you call your grandparents? If it's something unusual, tell us the story behind the name. If you're a grandparent, what do the grands call you? Who chose your moniker?

My dads dad died before I was born and his mom never remarried. My sisters, cousins and I called her Grandma. She would let us spend the night, she'd send us letters with a stick of gum in them, she was the BEST grandma! When we started having kids we all began to call her GG for Great Grandma. Even my dad began to refer to her as GG! My moms step mom didn't have kids of her own, didn't want kids because she didn't like kids. My sisters and I used to complain about having to go to the 'No No House', everything was off limits. We just called her by her last name: Grandma Kenney.

2. Ever taken a road trip along the California Coast? If so what was the highlight of your trek? If not, any desire to do so? If you were to take a trip along the California Coast what's one attraction you'd have on your must-see list?

I was born and raised in San Diego and my husband and I moved to Seattle in 1989. We have tried to calculate just how many road trips we've taken back and forth to San Diego over the years and we finally stopped counting at 35. I think the most dramatic trip was when we moved up here. We left SD on February 1, expecting it to take 3 days. We didn't expect one of the most major snow storms the West Coast had ever seen! Not having any experience with snow, we decided to take Hwy 101 figuring there would be less snow and even less traffic. We got into an accident (with my parents who were following with a second trailer!) on a snowy mountain pass and we realized later that the coast also didn't have snow plows. :(

 

 3. What are three things you don't know how to do?

I don't know how to drive a stick shift. Well, at least I don't think I remember how. We had a truck after we first got married that was manual transmission and I used to avoid all hills.

I don't know how to shoot a gun. 

I don't know how to file income taxes. I'm sure I could figure it out but I'm SO thankful that Chuck is good with numbers and doesn't mind doing it every year.

4. Tom Peters is quoted as saying, 'Celebrate what you want to see more of.' If that's true what will you celebrate and more importantly, how will you celebrate?

I'd have to say, family and friends. I love Washington State, it truly has become home but all of my family lives in San Diego and the older I get the more I miss them. I also miss my best friends from high school. We're scattered all over the U.S. and I almost ache to be able to spend time with them again. How will I celebrate? I want to start planning to visit them; put dates on the calendar; start saving money for these trips; and really make an effort to make it happen.

5. Thursday (February 16) is National Almond Day. Do you like almonds? Which would you prefer-an Almond Joy or a macaron? What's something you make that calls for almonds?

I don't like almonds very much. Although I'd definitely have the Almond Joy because I LOVE coconut!!

6. What does Saturday morning look like at your house?

We sleep in, enjoy breakfast together, it's very quiet and lazy. I work days and Chuck works nights so being together on Saturday is priceless.

7. Share with us a favorite book you've read this winter.

Leaving, by Karen Kingsbury. It's one of the last books in the Above The Line series. It's about two missionary families who have returned to the states to fulfill a call on their lives to make faith based movies. Leaving is the story of Bailey Flanagan, the daughter of one of those families as she heads off to college. The heartbreak that comes with leaving well-loved family and the joy that fills your heart as you follow after God's will for your life.

8.  Insert your own random thought here.

We traveled a lot when our kids were small, even spending a week at an orphanage in Morelia, Mexico. But since they've gotten older our two youngest daughters have had the opportunity to travel around the nation and the world - without Chuck and I. Sharaya went on a youth missions trip to New Orleans to help clean up after Hurricane Katrina; they've painted churches in Canada, and held a street fair in San Fransisco. They've traveled to Chicago, New York, London, Italy, Australia and as a mom I couldn't be more excited for them to have the chance to see so many different places. To spend time with different people in different cultures. To experience the sights, sounds and smells of places other than home. Those are priceless adventures!

It's A Set Up!

I'm relaxing today while I let the antibiotics take affect (bronchitis) and Beth is doing some chores for me.

 

Her and Nick are going out to dinner tomorrow night and she is so excited!

Diana and her boyfriend are in London for Valentines Day. They debated about what they should do and she suggested London. He said, "Okay" and bought the tickets! Can you even imagine?!

Beth was listing all the Valentine couples the other day, "You and dad, Me and Nick, Diana and Peter, Sharaya..." Her eyes got a little wide and I said, "Maybe Allison can be her Valentine this year."

 

 But I could see the wheels turning in her head, like she was trying to think of someone that could be Sharaya's Valentine. So heads up Sharaya! She just might try to set you up!

I hope that you and your Valentine, no matter who that might be, have a wonderful day! And not just on Tuesday. Tell those you love how much they mean to you all year long. 

Happy Valentine's Day!

Hello Readers! I have a question For You

I was invited to a brunch last weekend for moms of kids who have special needs. It was sponsored by a group called Eagle Wings, a faith-based organization that provides activities for adults with special needs. In fact, they put on the Winter Wonderland Ball that Beth and Nick went to a few weeks ago.

Nick's mom had invited me to the brunch so I dropped Beth off at their house so the two of them could have some time alone (Nicks dad was home - which I was very thankful for after reading their texts the night before! Two consenting adults with raging hormones... well that's a post for another time!) 

So Loren and I get to the brunch and it's held at a quaint little coffee shop, it's actually an old church that's been converted and it's filled with antiques and collectables and the room was so cute!

 (This photo is from their website)

 

They had round tables set up for us and served us the yummiest croissant sandwiches!

(Again, not my photo)

(It wasn't until we left that I thought to take photos. Sigh.)

There was no agenda or special speaker, it was just a time for us moms to sit down and have adult conversations with each other. It was nice to just sit and talk with others, not rushed or directed, but just sharing our hearts and our stories.

Loren and I ended up taking Beth and Nick out later so they could get some lunch.

I spoke with some of the board members of Eagle Wings to see if my church could possibly host an event for them and we plan to meet in a few days. The problem is, I have no idea what we should do! Maybe a movie night? But we'd have to sit in chairs... I've been racking my brain and can't really think of anything.

What kind of event would you attend? If you have kids with special needs and were taking them out for the evening, what kinds of things would you want to do? Even if your kids are 'typical' what activities or events would you be interested in doing?

"Oh." And The Importance Of Speech

This is Beth's go to word lately. It doesn't matter what we're talking about or where we are, her response has been "Oh."

We were at the store last night and she had already said it about 10 times since we'd left the house so I started telling her about it. How she always says "Oh" now. It's not an excited "Oh!" or a contemplative "Oh." 

Just a monotone, unexpressive "Oh."

So we're walking around the grocery store and I said something to her, don't remember what it was and she automatically answered with "Oh." 

But then she burst out laughing! I pushed her a little, "See! You do say it a lot!" and we laughed some more.

We got to the cash register and I checked out first. Beth has done this many times by herself so I usually just step aside and just keep an eye on her to make sure everything goes okay. Well this time when Beth got to the register, one of the clerks, A, a friend of Diana's came up and asked me about a friend of theirs. A is hard-of-hearing so even though I was fully engaged with her, I was only a few feet away from Beth as she checked out.

As we were walking out of the store, Beth sadly held up her receipt and told me that she didn't get any cash back. I often tell her how much she can get out when she uses her debit card but I forgot this time and was busy with A. She didn't say, "Mom I'm getting out $20!" like her sisters would have. She didn't say anything. She just quietly checked out. She really needed to get cash out and was visibly sad about it so I ended up loaning her some money for today.

~~~~~~~~~~~~~~

I wish someone would have told me 20 years ago just how important speech would be today, when Beth was an adult and trying to get around in the world. Beth had speech therapy in school but she needed more. And it's not just about grammar and pronunciation either. There is so much more that surrounds speech, like confidence and boldness. There's the ability to look at people's faces when you're speaking. There's knowing the topic and direction of the conversation and Beth doesn't have any of those skills. 

I know part of that is our fault for speaking for her while she was growing up. People would get impatient waiting for her to talk so Chuck and I would do it for her. I didn't know we needed to wait 10 seconds so Beth could answer. That she needed that time to process what's been said, form an answer in her mind and then speak it out.

I wish I knew then what I know now.

I tend to compare Beth with Sharaya and Diana and we didn't have to teach them how to talk to others. I'm sure there was a time or two of "You need to look at me." Or, "Wait, wait. Take a deep breath and start again." And I know we did those same things with Beth but now I realize we should have done more.

We should have broken it down step by step: raising her chin, focusing her eyes, standing or sitting up straight. And we would have needed to do this over and over. And over. I just never thought about what her communication skills would be like in her 30's when she was trying to hold a conversation, how she communicated with her boyfriend or needed to get her moms attention in the grocery store.