University of Washington Study on Autism

Most of you may know, but if you don't, Jacob, our oldest, was diagnosed with high functioning autism two years ago. He also has had a diagnosis of severe ADHD since age 5. We always say, "If people don't believe in these diagnoses, come stay at our house for a day and then they will change their minds." We have had the opportunity to get him assessed multiple times by different agencies and feel like we are doing all we can to help Jacob. We go to national conferences each year to try and learn as much as we can. It is all helpful, but we have found that what we can do is try to get involved in research studies that are trying to find out better ways to treat and diagnose these different illnesses. Last year, Jacob and his brother Jonah (who doesn't have either diagnosis) did a research study at the UW Autism Center where they wanted to compare brothers, one who has autism and another who doesn't. One of the things they had to do was take blood, which wasn't fun for either one. We have now promised them they don't have to do that again. This year, we are involved in a couple more studies through different universities. On Friday, Rebecca, Jacob, and I went over to Children's Hospital and started a study where they want us to videotape 2 hours of different behaviors in the home or a "normal day" for Jacob. They want to see footage of when he is having a great day and when he is struggling through the day. He was willing to do this and got to sign his own consent form. We tried to make a special day of it. Anytime we pull him out of school and he gets to spend the day with both of us is a good day. We rode the ferry over, went to our appointment where he got to get blue doctor gloves and a mask, and the we went out to Johnny Rockets diner where he got to order an Oreo shake. We had fun and got to bring their video camera home. Once we have about 2 hours of footage, they will get it back and condense it down to about 6 minutes. Then, they will take all 8 subjects' footage in the condensed version and have all of us watch them and then rate the behaviors. The goal is to try and come up with an objective way of evaluating behavior for autism. It should be interesting. Anyway, here are some pictures of our day together. Jacob got to get his own badge at Children's Hospital, even though they don't normally give them out to kids under 12.

This was in the office prior to going into the appointment. He is always a little nervous but then warms up to the doctors right away. Since he is a very likeable child, everyone just loves his personality.

We did go to lunch afterwards and Jacob picked to sit at the bar so we could pick music at the juke box and watch them make the food. Great food, by the way.

Jacob wanted to take home the menu and put it on his wall, but I encouraged him to make his own menu and he got excited about that.

He got a kick out of the waiter making a half smiley face with the ketchup.

Jacob got a huge burger which he loved. He worked up an appetite.

For those of you who ride and know the ferry system, you know that you can miss the ferry by seconds. We drove down to the ferry, paid and we were the last car on the ferry. We are normally the ones that pull up right as they close the ferry gate in front of us, so this was a nice break for us.

All three of our kids are in another study next Friday through the U of W where they are going to do EEG scans on each child. They wanted some subjects with autism and some "typically" developing children--his brothers--so they can compare the brain activity between the two. They will also do some cognitive testing and IQ tests. We have explained it to all the kids and all they wanted to know was, "are they going to take blood?" We made sure we asked and the answer is no.

The last study that we are doing this year is at the University of Michigan in Lansing, MI. We met a researcher at an ADHD convention in October of '08 who was looking for children with autism who were around Jacob's age. They are going to fly Rebecca, myself and Jacob back for three days and do some testing with Jacob including an MRI scan. It is all very organized and they are all so excited to have us come. We are grateful to help and hope that we can learn as much as we can from this visit. We will get a picture of his brain and they will explain what they see. Jacob, of course, had to be on board with this before we agreed and he is gung ho. It will be an emotional trip for Rebecca and I because they day of the MRI, they have to test him without his ADHD medications. We have never gone a full day off medications and we know it may be difficult. This trip is in May over Memorial Day weekend. Anyway, so much to learn and try but we certainly have come a long way in the last 5 years. couldn't do any of this without the help and support of our family and friends. Now we know why God surrounds you with those who can give you what you need even when you don't know you need it. We will keep everyone updated. You never know, maybe someone else has information that we don't or vice versa. Have a great day and God bless.

Robb

Consequences are a bummer

Jonah agreed to scoop poop for the dogs with his grandparents so that he could earn money to buy heelys. He earned $20 and he found them on sale the other day for $19.99. He was so excited because he had the money he needed. We made a deal with him that since he had opened a checking account and he just had $20, we would pay for the shoes and he could keep scooping poop and he could pay us each day until the $20 was paid off. This way, he could keep his money in savings and keep up with the job. He agreed. Well today, he didn't want to scoop the poop at 4:00 or 5:00 so after dinner, he had to do it in the rain/snow downpour. I think a big part of him loved having to do it in the pouring rain because I saw him outside playing in the mud. We had to catch this on film. After wards his grandparents made him hot chocolate. Procrastination pays off I guess when you are Jonah. Reminds me of Eric, a friend from college where everything always worked out.

This was Jonah on his way over to get the scooper. He probably had a big smile on his face that we just can't see.

Not sure if you can see the rain. My eyes are trained to look right through the grey since I have lived here so long.

Right after he finished, the rain stopped. The whole experience didn't seem to faze him, but he wouldn't tell us even if it did. I was proud of him for following through. Go Jonah.

Activities on a snowy/windy/rainy/sunny day

We all sat down and played monopoly and no one killed each other which is an incredible thing. Some watched a star wars movie, some played outside in the snow, and all the kids did their reading for the day so that we could relax and get in a conversation. Not a bad day. We decided to go to church at 5 p.m. today instead since we missed this morning. Nice to have so many services.





















I washed the dog with help from Jacob and Noah. I didn't know which was harder to control, the dog or the kids. The dog did great. I was a sweaty, wet, mess when we got done. The bath was long overdue. We dried him all off and he slept for awhile while he dried. Jacob combed him later and then got out his training book and wanted to start in. I love Lego's look on his face as Jacob read.





Lego is thinking, "I guess I will do some of these tricks to make him feel better. I mean he is working hard at it."











I think Lego was wanting me to come and rescue him from the waiting. He is a very patient dog. There ended up being some training, and then Lego was off to sleep again. All and all, it was a nice, relaxing day. Back to work tomorrow. Hope your Sunday was satisfying.

Robb

Snow again on March 15h? What's up with that?

We woke up this morning to snow dumping from the heavens. This was not something that was supposed to happen, but in the Northwest, always expect that unexpected. The great thing is, we sit back, drink coffee, and enjoy the down time. Last I checked, we had 4 inches. It is supposed to turn to rain later which will be a welcome sight. We don't want to miss school tomorrow. It is pretty. We were supposed to be at church to volunteer, but that's not going to happen today.




Our first instinct is to try to figure out what to get done in the house, but Rebecca said "Would it be so bad to hang out and enjoy the time." So, I am updating the blog, which has been on the back burner the last two months. Jonah finished out his basketball season with Upwards and he had a great time. It was a great experience for him and I loved coaching his team. He really wants to do it next year.





I leave for Mexico to build houses in about two weeks. Doesn't seem like it is close to spring break at all with the snow coming down. It will be here quickly and I'm not sure I'm ready. I guess all I need is an hour to throw some grubby clothes in a suitcase. Enjoy the other pictures.

Day of swimming

We were supposed to go to lake Chelan this weekend with my parents, but it didn't work out with scheduling. In the end, it really did work out. Yesterday, Rebecca and I spend the day cleaning out the kids' rooms and moved beds around. Not very fun job, but had to be done now that we found out the Noah is allergic to dust mites. We put Noah on the top bunk and Jonah on the bottom. We put the new mattress on and are hoping that it helps.
Saturday, we went to the swimming pool with my parents and then out to dinner. They kids love this place.



Jonah loves the rope swing and was pretty good at it.



























Jacob taking a break and having a snack before he jumped back in the water.

















Jacob and grandma hanging out.













Noah with grandpa














We swam for about two hours. They have a water slide and a lazy river which Noah loved. He was so tired by the end of the swimming time. We went off to Mexican food and then the kids hit the pillow. Rebecca's cousin, Amanda came and hung out with us at dinner and later that night. We had a great time having her with us, and so did the kids.

Congratulations Sue!

Rebecca's mom, Sue received a golden acorn award this year for her school. They had a dinner and award ceremony last Friday and Rebecca was able to present the award to her mom. It is a great honor.










Can't really make out the picture very well, but still, you get the idea. Congratulations!

Good big cousins

All of the kids love it when their younger cousin, Thomas, comes over to play. Noah does a great job feeding Thomas and he loves it to. Jacob loves playing with Thomas. He wishes he was a little bit older, but he's going to have to wait. He wants to teach him to play Lego's.









Thomas loves to chew on everything now. The kids think baby slobber is nasty. It is good for them.

Happy 67th Birthday Dad--January 26th

Isabelle trying to figure out how to show 67 on her fingers. We tried to explain but it just didn't work.












All of the little helpers gathering around during the birthday. After he blew out the candles, all the kids attacked the cake to grab the candles and lick the frosting. Someone joked once that at no other time would we all allow someone to blow all over a casserole and then serve it to all of the guests. For some reason, we allow that to happen freely with cake.






Happy Birthday dad. Stacy and I gave my dad lunch at the casino and some gambling time with him. We had a great time playing black jack. Stacy won $30, I won $70, and my dad won $100.

Memorial Service in January

My grandmother died in December, but we had her memorial service in January so that as many people could come as possible. We had a great time seeing cousins that we hadn't seen in years due to distance. Here are just some pictures of the family.









Afterwards, we all came back to my parents house and Jacob and Isabelle and Jacob got jiggy with it. They had a great time dancing. We tried not to make a big deal about it or they would have gotten embarrassed and stopped. So we had to hide around the corner and take these pictures.







My Aunt Lynn and her family.













All of the great-grandchildren who made it to the service.












All of the cousins who made it. We are all so much older.












Scott, Stacy and Tom














My cousin Marcy and her husband, Mark.












My mom and her sister and brother. We all had a lot of fun seeing each other which is what my grandmother would have just loved.

Jonah's Upwards Basketball Team

Jonah decided he wanted to do Basketball this year and he has had a great time. I have been helping out with the coaching which has also been a blast. It is great to see all these boys improve like they have.










They have really worked as a team and get so excited when they score a basket.












Today, Jonah had a crowd of 13 family and friends watching him. It was most of the stands. he loves being in the lime light.











At half time, the ref does a brief bible study with all the teams and then they get back out on the court and play. It is a great program. We pray before each game and the whole focus is making sure each child learns about basketball and has success on the court.









Jonah is the tallest on his team, so he sure gets a lot of rebounds. He gets so excited before each game. It has been a great experience for him and I am glad I can help coach and have that time with him and his peers.

A Smattering of experiences

A lot of different pictures on the blog this time. Seems like a lot going on when the kids are off on break. Noah playing the Wii. He is the one in the family who understands the Wii inside and out the best. He tells everyone how to play. He even stands off to the side when it isn't his turn doing all of the motions without even knowing it. It is fun to watch him.







Sarah and Josh (Rebecca's sister and brother in law), got their three month old, Thomas, dedicated in front of the church the weekend after Christmas. It was great to see him up there. He is growing like a weed and it is really fun to have a baby around again. And to answer the question for all of you wondering, no, we aren't getting the itch again. It is just nice to have a baby to play with again, and then give back.




At first he didn't seem sure of being given to someone else, so Sarah made a attempt to calm him. He did great.











Rebecca took the boys with friends of theirs to Seattle Center on Tuesday because admission was only 94 cents because of some radio station promotion. The kids all had a great time. I thought this was a great picture of Jacob. He now wants one of these in his room...and he is serious.








Jacob doing a stretching game at Pacific Science Center.












Here is the whole clan of them outside. Six boys at the science center.....kind of a lot of energy don't you think?











Lunch time. We always wonder how Jonah has time to actually eat at school because he is so social. Believe it or not, he does find time to wolf his food down in between socializing.


























They have a water area where they can aim water guns. Notice, though, that it is behind glass...smart move on their part.











Because of Noah's age, he got to go in the 5 and under section where the kids aren't so crazy and he got to play with water. Our kids have always loved this part of the exhibit at this age.












I am sure they are both thinking about how they can get the animal out of the cage. I know Noah and how he thinks.










Not sure what they were doing, but they sure look like they are having fun.













On the ferry ride home looking wiped out. Rebecca said they were great all day long, which is a lot to say for six boys.

On New Year's Day, we ended up taking down the decorations and the kids got roped into helping with the ornaments on the tree. I sat on the floor and collected them, putting them in boxes while the kids ran back and forth taking them off the tree.

Not really sure why Jacob was wearing a head band, but you never really know with him. I look quite comfortable on the floor, don't I?

Great little helpers. Sometimes it is like herding cats-they all have a mind of their own.

My parents came over that night and we taught my dad how to play the Wii. They had a good time. Kids go back to school in three days, the fun will be over and Rebecca will do cart wheels across the lawn while the bus goes by.