My Brother with Down Syndrome Got Married

That's a pretty explicit title, but I did it for googlers. When Jerry was born, I would have loved to find out about other Down Syndrome folks and what their lives are like. So, if you are new to Downs and doing a little research, or asking the question, "do people with Down Syndrome get married?" - they do.

Jerry made a little speech at the wedding reception saying "I was afraid that I would be alone all of my life, but I met you. And now we are married and will live together for the rest of our lives." (Rough quote, I can't remember exactly). He beautifully stated what I had feared always, that he would be alone. I have great joy knowing he will not be lonely traveling through this life.

My brother lived with my parents for 22 years, until they died. At that point, he came to live with me, his only sister 10 years older, and my family. After a few years while we went away on vacation Jerry went to a nearby group home. He was not happy to stay while we went away, but my husband and our two daughters were in need of a break. (Later we had another son and daughter, pictured above in the wedding portrait).

It is not easy to absorb a brother into a busy household. We had many adventures while we tried to give Jerry life skills once he came to our house. I can tell funny stories that would make you laugh until you cried. My parents had loved Jerry immensely, but spoiled him and catered to him and they did not teach him many skills he needed. We helped him learn to make his own food, have a higher amount of personal responsibility for himself, his personal hygiene and his surroundings, and generally try to be more independent. We also nagged him into eating responsibly, and as a result he lost weight and no longer needed insulin for his type II diabetes.

While living with us was good enough, Jerry did not have buddies. He would play outside with kids in the neighborhood. When Jerry moved to his group home, he suddenly had friends. They wanted to watch movies or wrestling with him, play video games, played on his Special Olympics sports teams and afterwards hung out. Many of them worked together at the sheltered workshop. They travel together (cruises, Hawaii, New England) through the travel club. Life became very full. His two week respite visit became permanent, and he has lived there for the last eleven years.

Earlier this year, we had a meeting with Jerry and his girlfriend and her family, along with their Regional Center Counselors and representatives from the home. Subject: marriage.

I confess that I went in skeptical, and didn't think that it would be in the best interests of everyone financially etc. But it turns out that it could happen, and after hashing out some of the details and concerns all parties agreed to move forward. A date was set. We did a wedding with lots of donated and homemade goods and services. The bride and groom had saved up money, and we planned accordingly. It was fun, and lovely (if I do say so myself).

Jokester - stole the bride's veil and flowers, and mugging it up for the camera

Jerry and his wife will be roommates in one of the bedrooms at the group home. They had a quick few days of honeymoon at Disneyland (a post in itself) and later this year will go on a cruise for a longer honeymoon, with their travel club and the regular chaperones.

I am sure that there will be challenges that all newlyweds have, in addition to the challenges specific to them. But my heart is full. I am happy and feel lucky that he has great friends, and now that he has love and marriage, because earlier on we didn't know that would be possible. I think my mom and dad would be mighty thrilled.

We are celebrating!

Kiss the Bride

Celebrity Doppelgangers

All right, for some reason I can't rearrange uploaded pictures on blogger very well, which means that the comedic punch of this post is going to be all messed up.

Celebrity doppelganger week on Facebook. So who

are the celebrities around our house?

Well, I have a few I would like to claim.

My doctor thinks I look like Natalie Merchant.

Jennifer Tilly has been suggested to me by Miss Cindy. Here's a picture where she is not showing her enormous bozooms.

I'd like to say Moon Bloodgood.

But the most common celebrity lookalike comment I get is Jo from the Facts of Life, Nancy McKeon.

Fr. Hubby has a few. I'd say Alec Baldwin.

Or Dane Cook.

Or his half latin brother, Charlie Sheen.

I found out that Naomi's BF could pass for Gerard Butler.

We know that SteVB could be brother to Matt Giraud.

Naomi has a good Katy Perry look.

And Jessica always would get confused for Hilary Duff. For some reason especially when she worked at Coldstone. I guess people who go to Coldstone think Hilary Duff's twin would work at Coldstone serving them ice cream.

So who is your celebrity?

Graduation, 2008

A lovely night. I am almost speechless, we have so many emotions.

Here are the 500+ graduates:

One exciting thing, there was a streaker afterwards. This person dropped his gown then ran with just a tiger striped speedo thong on. There is a lot of discussion of what he had painted on his butt, we think it was either his sports team number, which started with a 2, or 2008.

Lots of family came to celebrate. Oh, and we all gave Jessica lots of leis, she had the most of anyone in the school:

Me, my Jessica, and Fr. Hubby. We sure love that girl:

Steven Curtis Chapman Cinderella

Just the video:

http://www.youtube.com/watch?v=C5LteQgBIMA

Video with the story afterwards:

http://www.youtube.com/watch?v=MLYxtuC0oRk

Exciting Trinity Sunday at All Saints

It was such an exciting day. Dramatic, or as Nadia says, "amatic," to say the least.

First, somehow they didn't get all the bulletins I printed. We were short of bulletins, even though I printed the ususal number. I think there was a bulletin thief around. I gave up my bulletin and had to fake it when everyone was reciting the psalm.

DH was losing his voice. He wasn't wearing a mic either. It's so interesting when you are unsure whether or not the preacher is going to be able to continue.

Next, several new songs in the mix. And the musicians were standing up instead of sitting down. Very nice.

Fourth, SteVB and Nick the Cool sang a "ska" type song during offertory that had me thinking. And "I was thinking Bob Marley, yeah!" If only they had dreds, it would have been even more effective. But somehow SteVB is adamantly against growing dredlocks, even as much as we heckle him about it.

Fifth, DH was cracking during some of his sung liturgy during communion. Several of the people in church were giving each other covert looks and trying not to react. But if he had cracked one more time I think we would have been all giggly.

Sixth, during the time of ministry, POP! the power went out. Yikes! And it was 108 degrees today at church.

• The musicians went unplugged. Jess had to strum like the dickens, and the singers had to shout it out. SteVB, who was using an electric guitar, had to take Jessica's acoustic guitar and play it mighty loud during St. Michael's.
• The alarms starting going off, until Mae somehow figured out how to reset them.
• The kids started screaming in the nursery. We brought them into the sanctuary and opened the curtains so there would be some light.
• I started to wonder if KFC would also have a power outage, thereby keeping us from fried chicken lunch, and also if our home would be out of power, rendering our refrigerator full of food from Costco bad and us with no air conditioning. Luckily, the power outage was confined to the neighborhood of the church.
• We had to sing all of the praise songs from memory because we could not see the overhead projector. And we suddenly all came down with Alzheimers' so the music team had to carry it.

Seventh, SteVB took out the trash after church and the trash can fell down, and tons of poo poo diapers fell on the sidewalk and he had to pick him up with his young man hands, which are not used to poo poo diapers and were totally grossed out. It was pretty funny.
Eighth, Nadia told the kids in the nursery that our house burned to the ground and we were moving to South America. So those kids spent time after they returned to the service convincing their mothers "really, Nadia said so! they are moving to South America!" And their mothers thought "hmm, I think we would have heard if their house burned to the ground..."
Ninth, we got home and Nadia was playing catch with one of the Brothers' House guys and fell and got a bloody nose.
Tenth, Jessica found that one of the dogs had gotten into the pool and chewed her brand new pool floatie. We used it for the first time yesterday. Anger all around.
Yep. A very exciting Sunday. It was so exciting, that now I am going to take a nap. Such a day.

Happy Mother's Day and Apple Cake - No. 1

Happy Mother's Day to all!

Saturday, Luke came happily into my room in the morning. "Tomorrow is the big day!" He was so excited for mother's day, and it warmed my heart.

And we had a great time. First, church. Nice to see all the kids going to church with their mothers. Then, Fr. Hubby took us out to lunch at Island's. I had the delish teriyaki burger, plus onion rings and french fries, and we all shared the brownie vanilla ice cream and the coffee ice cream desserts.

Afterwards, we came home and ate pot roast for dinner. Or, roast pot, as one of my dear children said. DH put the babies to bed, very nice.

I got lovely gifts: a homemade bracelet from Luke, fresh flowers from SteVB and Jess, a hand colored potholder from Nadia, and a beautiful breakfast made by Luke: not one but TWO sandwiches - peanut butter & jelly, and a butter sandwich. And hot chocolate.

Then, in the evening Naomi asked if I would like anything and I wanted some cake. So at my request she baked one of the cakes from my childhood, from the Gardena Buddhist Church cookbook (the home of all 1970s Japanese-American potluck recipes).

It turns out that Naomi made Apple Cake - No. 1. Delish.

But there are also the following recipes in this cookbook:
Apple Cake - No. 2
Delicious Apple Cake
Fresh Apple Cake - No. 1
Fresh Apple Cake - No. 2
Fresh Apple Cake - No. 3
Happy Apple Cake
Yo's Apple Cake
Apple Chunkies
Applesauce Fruit Cake
Quik Chocolate Applesauce Cake

So. We liked Apple Cake - No. 1. But we may need to go on a bit of an apple cake quest in order to figure out the best of the apple cakes. I think Naomi's interested in the Happy Apple Cake. But I think they call it Happy Apple Cake just because of the brandy in there.

We amended Apple Cake - No. 1 in order to have less sugar. Here it is with less sugar:

4 eggs
1.5 cups sugar
4 tsp. vanilla
1 cup oil
2 cups flour
2 tsp cinnamon
4 tsp baking powder
2 cups fresh apple slices
1 cup nuts, chopped (we omitted this, didn't have 'em)

Mix together eggs, sugar, vanilla and oil. Add flour, cinnamon, baking powder, apple slices and nuts. Pour into wax paper lined (bottom only) 9x13 inch pan. Bake at 350 degrees for 1 hour or until cake tests done.

Motivated Mskis

In an attempt to keep things under control around the house, I got the list of chores from http://www.motivatedmoms.com/. It's a great plan, where you essentially have a little checklist of daily chores and special chores for each day. If you do these things, the house will be all sparkly. The whole calendar year was $8, and from what many of my friends say, it is well worth the cost. Instead of walking around wringing your hands, you know what to do to get the house clean.

So. They give you a sample online, and here are the dailies from the online sample list:

• Make beds
• Feed pets
• Load/run/empty dishwasher
• Sweep kitchen & entryway
• Clean kitchen sink
• Clear/wipe kitchen counters
• Plan/cook dinner
• Wipe out bathroom sinks
• Empty trash
• Do laundry
• Read to children
• Exercise
• Quiet time
• Take vitamins/medication
• Prepare tomorrow's clothing

So I explained the system to the girls, and told them that was we complete these things, we check them off on the list, which is on the wall in the kitchen.
Naomi: "I'll take quiet time."
Jessica: "I'll take vitamins."

Welcome Down Syndrome Parents!

I have had some visitors from the Down Syndrome message board... to you I say welcome! You have my utmost respect and good wishes. Our life with a Down Syndrome family member was not always easy, but still great. And I don't know if anyone has told you, but some DS folks can have wickedly funny senses of humor. And a little bit of style, and scandal. I think that's my brother in a nutshell.

After my parents died, Jerry lived with us for a few years. We had to teach him some basic living skills, because my parents really babied him. But after a few years of teaching hygiene, bed making, and some cooking and cleaning, he was ready for more independence and so were we.

He moved to a group home nearby, which is a beautiful place with several individual homes on the property. He belongs to their travel club, and has been to the Super Bowl (twice), a Caribbean cruise, a trip to Philadelphia, a trip to Disney World, a trip to Hawaii, and is going on a Mexican cruise. For the first time, he has true buddies that he can hang out with. Though I sort of feel bad that he doesn't live with us, he is immensely happier hanging with his friends, working, and doing fun stuff.

On Learning to Clap

When I was born, I was an only child for a long time. Ten years. That's pretty formative. I got a lot of the only child habits and attitudes. Then, after my cousin was born, I told my parents that I wanted a baby brother. Being very good parents, they complied with my request and my baby brother was born about a year afterwards. I even suggested his name. After he was two weeks old I desperately wanted to change his name to Dennis, but apparently my parents wouldn't give on that.

When Jerry was born, no one knew that he had Down Syndrome. Because we are half Asian, it seemed to be OK that he had slanted eyes. But he did have a terrible sucking reflex, and some floppiness etc., things that caused concern. At some point, months after he was born, he had a chromosonal analysis that uncovered that he had trisomy 21 version of down syndrome.

My mom told me about Jerry's condition after the results came back. I'm sure they must have been worrying about him, but never let me in on it. I didn't really fathom what his diagnosis meant at the time. Truth be told, I had gotten to be a rather bratty, spoiled only child. I valued intellect (since I was in the gifted program) and was getting rather snooty about people who didn't fit into my IQ range. That was odd in itself, given the fact that neither of my parents had graduated from college. I guess it was the extended family and school influence.

Anyway, plop comes a brother into my life who will never even have an IQ of 100, much less more. My mom, who had been thrown into a terrible postpartum depression after I was born, got even deeper into a spiral of hopelessness. She was a paranoid schizophrenic, but I believe at this point it was just a real depression that she fell into. Mom was Japanese, and Japanese people didn't have retarded kids. There was a distant relative on my Dad's Caucasian side of the family, related by marriage, who had Down's Syndrome and I'm sure Mom felt it was Dad's fault that Jerry came out with Downs.

I found out later that Dad didn't really know what to do. Mom wouldn't pick him up, or change his diapers, or tend to him. Since he worked as a mechanic for a major airline, he had flying privileges and got my aunt to take care of Jerry for the weekend so we could go to Hawaii. My one and only time in Hawaii - I was in the fifth grade, having a great time, oblivious of the fact that my mom was desperately, suicidally miserable and my dad was hopelessly grabbing at straws trying to make her happy.

Anyway, we spent the weekend in Hawaii. Mom slept a lot, but she did at least come alive to some degree. We came home, and found out that while we were away, Jerry had learned to clap. My aunt had worked with him, and he was clapping on command when we got home.

Somehow, the clapping was a sign that he was not an animal. He would learn. He could interact. It was hope, and it gave mom hope. From there on, we got him into infant stimulation classes, made friends with other parents of Down Syndrome kids, and Jerry learned to walk, and talk, and read, and do math, scheme and dream and eventually work in a store.

I later found out how much it had shocked my parents that Jerry clapped. They were told by the first doctor they met with to give him up into an institution (this was in the mid 1970s) and that he would never speak. Our own pediatrician had told them to raise him as a regular child in our home, and just love him. My aunt's teaching him to clap gave them an incredible hope, and lit the fire to raise him and teach him. I used to work with him for hours on various things and rejoice in the accomplishments. Every milestone: a hop, a thrown ball, a recognized letter, was a victory and a celebration.

With lots and lots of clapping.

Let it Rain

Open up the floodgates of heaven, and let it rain!

Well, it sure did pour around here today. And it was a delicious, wet, cold, rain.

Nadia and Luke did stick out their tongues in order to taste it.

Jessica was nervous about driving in it.

And Naomi? I am not sure. She didn't seem too worried.

If I had been on the ball enough to bake chocolate chip cookies, it would have been perfect. As it was, it was pretty darn cool.

"Sleep"

This is what passes for sleep in the mski master bedroom:

10pm: Go to bed early, being a little wiped out from the weekend.
Midnight: Wake up, hear the dogs barking, and put the dogs in the garage. Go back to sleep.
2am: Luke (age 6) comes in crying with growing pains in his legs. Wake up, give him some junior tylenol, go back to sleep.
3am: Nadia (age 4) comes in having wet the bed. Get her into new clothes, go back to sleep.
4am: Cell phone runs out of battery and starts to beep. Wake up, answer the phone, realize it is only telling you it is going to die, turn it off, then go back to sleep.
6:30am: Wake up, get the teenage girls awake so they can get ready for school. Go back to sleep.
6:45 am: 15 minutes later, wake up, having had a nice long sleep and going to bed early.

Bright and shiny for the new week.