Friday, April 27, 2012

It's Not Very Exciting, But She Loves Her Life

Our lives are not very exciting. Beth is an adult. She doesn't go out to play. We no longer meet at school for IEPs, sometimes she's home all day.

Our family is somewhat sedate. I know people who go 24/7. They just never stop. Our neighbors are like that. When they pull into the driveway, he goes out to mow the lawn before he goes into the house. They work from morning to night and when they aren't working, they're traveling.

We're not like that. Chuck and I both work outside the home, then we tend to sit in front of the TV at night. Or we'll sit around the table and play board games. Or we'll sit in front of the computer. Like I'm doing right now. :)

Consequently Beth does the same. She's 27. She has a small apartment in our daylight basement. She eats dinner down there. (We've tried to get her to eat upstairs with us but she gets mad. Last time she shoved the food in so fast she began to choke.) After dinner she watches TV. Or turns off the TV and puts on her head phones. She'll listen to music while she writes.

She goes out a few times a week during the day -

Sunday morning she's at church singing in the youth choir or greeting
Sunday evening she goes to choir rehearsal
Tuesday she's in a bowling league
Wednesday she goes to karoake and art (she's gone for 8-9 hours!)
Friday she attends a job class

Other than that, she's at home. She'll go shopping with us or to the grocery store with us but we don't go out that often. Sometimes I feel guilty that I haven't found some friends for her to hang out with. I feel guilty that we don't take her more places or give her more things to do. But she doesn't seem to mind.

On Monday and Friday I leave her a list of chores and 'paperwork', math and handwriting pages we used when we were homeschooling. I make copies for her and she loves doing them. She'll read or dance or sing. And she's happy.

She loves her life. She's content. At peace. This is her life and in her eyes, it's a pretty great one.

Tuesday, April 24, 2012


I spoke at our MOPS (Mothers Of PreSchoolers) group today. I was so scared but it went really well!

I wrote out word for word what I wanted to say. My topic was 'What is the hardest part about raising a child with special needs?' I practiced saying it over and over.

We have a daylight basement with a great room, then a small bedroom that we've made into a den. (It had been Beth's bedroom but it's kind of dark and way in the back of the house and she didn't like it so now her bedroom furniture is in the great room.) I went into the den numerous times to practice.

Then I typed up just the outline and I practiced that. I gathered some pictures of Beth and our family; at the ocean, climbing trees, Beth as a baby, an adult; just so they could see who I was talking about.

Diana bought me a book in London called Keep Calm for Mums. Its filled with quotes about motherhood. I started off by reading a few of those -

- If you want your children to listen, try talking softly.... to someone else.

- A sweater is a garment worn by a child when the mother is chilly.

- If the kids are still alive when my husband gets home then hey, I've done my job!

- Making the decision to have a child is forever having your heart walk around outside your body.

I talked about how hard it was when Beth was born. The resources were outdated. And there was no texting. If you wanted to call someone you sat down at your kitchen table (because the phone was attached to the wall!) and you talked to them. Or you could get an envelope and a stamp and mail them a letter.

I said things had changed a lot since Beth was born. But one thing that hasn't changed is a question that gets asked of parents of children with special needs. And that question is:

What is the hardest part about raising a child with special needs?

I said the answer could be different for each parent but for me, the hardest part was public reaction. When people stare at Beth when we're walking through the mall. It's human nature to look at someone who is different. If you see someone in a wheel chair I think its natural to glance over at them. But then the majority of us go on about our lives. There are people however that stop walking and truly stare as Beth goes by. I encouraged the moms not to stare, but to make a connection. Introduce themselves, talk about their family member who has special needs. If they see a mom at the park who has a child with special needs, go over to her and say hi. Ask her about her child. Too often parents of children with special needs feel isolated and alone. Make a connection.

I had one mom ask about what to do when their child stares. I told her that she could stop her child right there and talk about the situation. (Don't necessarily stop the person who has special needs, but find a place out of the flow of people and have a discussion.) Why is that boy in a wheelchair? Maybe he got hurt and now his legs don't work. Talk to them at their level so they realize he's just a boy in a wheelchair and there's nothing to be afraid of.

I had a mom who teaches Sunday school ask about what to do when the child definitely has special needs and the other kids in Sunday school are asking about her. The parent isn't there, what to tell the kids? I told her (and I know the Lord was giving me these answers!) she could gather the kids around her and talk about how God has made all of us different. You have brown hair, Jimmy's hair is black. She's tall, he's shorter. Susie likes to sit quietly and read books while Johnny is very active. Don't single out the child with special needs, but talk about how everyone is different.

I could go on and on about the morning, I just want to say how absolutely amazing it was! Oh and after the first session (I spoke the same thing two separate times) a mom came up to me and told me that she has 3 boys. The oldest and youngest both have autism. Neither of them speak. I could tell she was overwhelmed.

After the second session a mom came to me and said she has a son with Down Syndrome and could she talk to me for a minute. She started to break down and said it was nice to talk to someone who had been through it. Afterward she told me he was in the next room, "Do you wanna meet him?" Yes!!!

Too often I feel isolated myself, living in my little world wondering if God can use me at all. Today He showed me that He wants to make a difference in these parents lives and He can do it through me. I came away feeling humbled and blessed beyond measure! I kept thanking Him over and over for what happened today. It truly was amazing.

Sunday, April 22, 2012

A Little Nervous

I find I have to write a post before I start reading your blogs. Otherwise I find myself still sitting here hours later and not word is written. I love reading your blogs, hearing about life at your house.

We talked to Beth about the thyroid procedure. I tried to put it in a way that she would understand but I probably shouldn't have said they were going to "kill your thyroid." I explained that she would take some medicine that would kill her thyroid, then she'd have to be quarantined and explained what that meant. We could bring her some dinner but we couldn't use the same bathroom that she used. She wouldn't be able to go to her bowling league or to art class. But it was only for 3 days and then she could go out again and eat with us again and everything would go back to normal.

I asked her if she had any questions.


Hmmm. I asked if she was sure and she said yes.

I came back upstairs and a couple hours later she came up. She peeked her head around the corner and asked, "Is it gonna hurt?"

I told her I didn't know. I said I didn't think it would hurt but we could ask the doctor when we make the appointment.

A couple days later I was at work and Diana was home. Beth came out to the kitchen and told Diana, "They're gonna kill my thyroid! I don't wanna die!"

Diana assured her she wouldn't die, then I talked with her again when I got home. This time I said the medicine would make her thyroid stop working.

Yea, I think she's a little nervous. 

Wednesday, April 18, 2012

By the Waterfront

Diana and I took Sugar for a walk the other day. Edmonds is right on the water (Puget Sound - it's a water way but it's not the ocean) so we went down by the marina. It was so beautiful! Winter in Seattle can be somewhat depressing but Spring and Summer are downright glorious!!

I might be in trouble for adding this one :)

I hope you have a beautiful Spring day!

Saturday, April 14, 2012

My Chicken!!

Some friends gave us an old, Playschool type kitchen. It's very old, the stickers are missing, the phone is gone and it's dirty. But my granddaughter's only two, she doesn't know any different. It's definitely an outside toy and I've been cleaning it whenever Seattle has nice weather. Like today. Sunny and in the 60's! Everyone is outside today, walking their dogs, riding bikes, working in the yard. It's just gorgeous.

Anyway, Allison says kitchen sorta backwards and I love it when she runs to the back door, points to the patio and yells, "My chicken! My chicken!!"

Wednesday, April 11, 2012

Please Learn From My Mistakes

We were at the grocery store the other day buying a good amount of groceries. Usually Chuck and I will have a cart full and then Beth buys her own things like shampoo, laundry soap, toothpaste, etc.

She likes us to go first through the check out, then she goes second. When he was done with ours he started Beth's and he asked for our phone number so Beth could get the 'card member' discout. I gave him our number.

Beth: "Oh maaan!"
Me: I'm sorry Beth. I should have let you tell him, huh?"
Beth: "Uh, yea!"

It's just so easy to do it myself. It's fast and it's done. But that's not the goal. The goal is to let her learn. She recognizes that she needs to do it and she's starting to remind me. If she does it, whatever 'it' is, she'll learn, the person helping her (cashier, waiter) will learn, the people watching her do it will learn. Now only if I would learn.....

I realize now that we did way too much for Beth when she was growing up. We took the easy road. We didn't want anyone to get frustrated or for Beth to do it wrong. So we did it for her. I did it for her. I remember our other girls telling us to "let her do it!" but I didn't listen. I see now how damaging that was to Beth. She is so capable of doing so much more, and sometimes I think it's too late. 'She'll be 28 this year, we've missed the opportunity.'

But I know in my heart that's not true. So each day I'm having her do more and more and she's doing it! She's very capable and smart and wants to learn. Please learn from my mistakes and let your kids learn. Let them try. Allow them to make mistakes and then try again. Who cares if the people around are frustrated or having to help? That doesn't matter. What does matter is your children feeling a sense of accomplishment, knowing they tried and succeeded. Even if they had to try over and over. Let them do it themselves.

Let them learn.

Friday, April 6, 2012


We spent some time at the mall today. Beth got paid last week and the money was burning a hole in her pocket.

Have you seen the newest Muppet movie? It's got Amy Adams in it and a couple other actors. To be honest I haven't seen it but I suspect it's pretty tame considering it's.... the Muppets. Anyway, that is Beth's new obsession. She had $20 and couldn't decide about getting the movie or the CD. We checked at Fred Meyer the other day but she decided to wait.

Today at the mall she chose the CD. She wants to upload the music to her MP3 player so she can take it to karaoke. (She also has a CD player that she brought with her to the mall so she listened to it on the way home!)

Walking through the mall Beth pointed aheaded of us, "That's Diana's favorite car!" Sure enough, there in the middle of the mall sat a 2012 Fiat. Beth looked at her, "Diana you get that car!" If only it were that easy. :)


We had a buy one, get one coupon for Auntie Annes so we just had to stop! Beth saw Andy there. He's a friend from bowling and he also has Down Syndrome. Diana said they had seen each other earlier and were both kind of shy. They both stopped and looked at each other, said Hi then walked away. At Auntie Annes though he was very friendly, they smiled at each other and Beth said, "See you on Tuesday."

At the Disney store she found a Muppets water bottle. She almost bought the mug but decided on the bottle instead.

Our next stop was Target. Beth said she had a gift card but she didn't know how much was on it. Too often we get to the check out to find out there's only $2.86 left. This time the guy ran it through the machine and told her there was $50 on the card!!! Seriously?!? Wow! I guess she's had it since Christmas! That's very unusual for Beth! She giggled a very excited, I-can't-believe-I-have-that-much-money- giggle and we were off to the music section.

She found the movie - for $6 less than any other store - plus a Disney Princess CD set. She got one set for Christmas so she bought the other set today. If there's one place this girl is the happiest, it's the mall. She adores shopping!

And now we're changing clothes and getting ready to go to the Good Friday service at church. Today we remember Christ's sacrifice for us on the cross. It's hard to call it a celebration; what He did, taking on all the sin of the world and dying on a cross so I could have a relationship with the One True God, Creator of Heaven and Earth is definitely something to celebrate. But knowing what He endured, what He went through for me, is very humbling.

Wednesday, April 4, 2012

Rewind Wednesday - Eating

I was looking for an old journal the other day and found some different journals from when Beth was in preschool. Do you ever do that? Go on a search for one thing and come across something different, sometimes something better?!

When Beth started preschool, we kept Composition Books that the teachers and I would write in each day. How Beth was doing, if any situations arose that needed our attention, etc. You may have them too. Anyway I found two old books dating back to 1987. At that time, Beth's teacher was also named Cindy.

This entry was dated October 26, 1987. Beth had just turned 3.

Teacher Cindy,
After I read Beth a book, she'll take it and 'read' it back to me by trying to pronounce words and using some signs - baby, eat. She does really well!
Also, when she eats, she'll push the food to the back of her mouth (with her fingers) so she can put more in and 9 times out of 10 she chokes. We're trying to show her to 'chew with her teeth' until it's all gone but she continues to push it back.

I had forgotten about Beth doing that. For years Beth has used her tongue to push the food to the roof of her mouth. Did you know kids with Ds have a very high roof? Beth's is like the Grand Canyon, a narrow, long space that seems to be a convenient space to store food. To this day, I'll see her using her tongue to cram food to the roof of her mouth so she can put more food in and then begin chewing. And if I don't catch her in time, she'll get so much food in her mouth that she can't close it!  I'll tell her to put a napkin in front of her mouth so she can chew. I don't know why she does it, drives me crazy.

I know many of you post about not being able to get your kids to eat. With Beth, it's just the opposite.

Sunday, April 1, 2012

Somewhat Quiet

We had a somewhat quiet weekend. Got to sleep in on Saturday, eat a casual breakfast and watched a movie. Beth had choir rehearsal in the afternoon but it only lasted an hour.

This morning Chuck took Beth to church early because when the choir sings in the service, they have to be at church at 8 AM for one final rehearsal. She did so good. Singing the songs and truly worshiping the Lord. It sometimes overwhelms me when our youth lead us into the presence of the Lord. I didn't accept the Lord until I was 19 so I didn't have that solid foundation when I was growing up.

The second service we go downstairs and teach Sunday school. Our class is called Special Connections and we teach kids with special needs. We have a total of 8 kids in our class but they rarely all come on the same day. Today we had 7. One with a seizure disorder, one with Down Syndrome, one with Autism and 4 with Aspergers. We decided our classroom is too small. :) We played outside, acted out the story of the Triumphal Entry, when Jesus rides into Jerusalem on a donkey. We had snack, watched a movie and the kids were still bored part of the time. Hard to imagine with two playground balls thrown over the fence and one clogged toilet. It was so great to bless all those parents and allow them to attend church as a family but we sure were exhausted at the end of class!