SAL-VA-TION: by grace

E-LEV-EN: children from 1984 to 2006

HOME-SCHOOL-ING: since 1990

DOWN-SYN-DROME: susie and gabe

GRAND-CHILD-REN: since 2010

FAITH-FUL-NESS: my steadfast rock, my biggest supporter, my leader, my friend, my love, my husband

Wednesday, March 7, 2012

A Long, Long-Overdue Gabe Update





Here's a look at his year and some significant updates.

Gabe's 6th year started with significant sorrow.

Just one day after his last birthday, Joey and Jamie lost their daughter Kaylee Hope.

A month later we spent a week with Carson and Keira so that Joey and Jamie could get away together. Gabe didn't comprehend the reason behind the visit, he was just excited about being Uncle Gabe for a week--with lots of hugs.

Maybe a few too many hugs for Carson

We've been working on writing, or I should say I've been working on getting Gabe to to some writing. He isn't so keen on it, he's definitely a gross motor skills guy, none of this finger coordination stuff. I thought he might enjoy the chalkboard more than pencil and paper. I was right! Sort of.

Waiting to be discharged after a hospital stay in May.
Gabe woke up with wheezing and a croupy cough that I couldn't get under control. Two doctors diagnosed him with asthma but I was sure they were wrong. I know we always need to question our doctors to make sure we get the best care for our children but that is even more true with children with special needs. I had noticed changes in Gabe's breathing, especially when he was sleeping and was pretty sure that the adenoids that we removed years ago were coming back. I consulted with our pediatrician and headed back to Madison to see a pediatric ENT. What has followed is a scope (adenoids blocking 50%) a sleep study (definite apnea), and medication to reduce inflammation (improved breathing but still apnea). I will have a phone consultation next week and our likely response now will be an adenoidectomy.

Summer time at the lake

We took a family roadtrip/vacation up through Canada, to Washington and the Olympic Peninsula, through Idaho and Montana and home. Making the ride fun is part of the planning with little ones in the van.

Canadian Rockies to me...

...a park and a swimming hole to Gabe

Puget Sound ferry

The US's only temperate rain forest is on the Olympic Peninsula

The northwest Pacific coast offers some of the best rock-throwing opportunities for little throwers. Gabe threw non-stop rocks for almost six hours, sometimes windmill style using both hands alternately. We counted how many he was throwing per minute and came up with a very conservative estimate of 11,000 rocks thrown for the day.

Sandpoint, ID--we stayed with Keith's boss from his first college co-op engineering job. Roger is a kind, generous, and remarkable host. He took everyone up for a ride in his plane (except Gabe who was just happy to get to sit in the plane).

Roger has built this little fantasy-land on his property. The deluxe treehouse in the back is outfitted with electricity and a queen-size bed. Our older children took turns sleeping in the tree. Maybe next time I'll be so adventurous.

We loved his signs

Montana and Glacier National Park

We hadn't planned to spend five days in Havre, MT but hitting a buck just before the weekend changed our plans. It didn't bother Gabe a bit!

Gabe always enjoys our week of family camp in August. We're outside all day, he gets to swim, play ball, and be with other kids all week.
Gabe with his cousin Lauren (4)

Not so sure she wants to share the ball

With the end of summer came an overnight trip for Gabe, Lisa, and me to take Troy to college.

We got him moved in and then drove up to LaCrosse to spend the night before the first game of Chet's MTU football season. We made the drive part of the enjoyment of the trip taking the river road and looking for birds, racing a train (parallel to it, under 45 mph), learning about locks and dams, and stopping when we saw a big park.

This one even had a "real" slide--over 5' high made of metal!

LaCrosse has a fantastic Chilren's Museum. We have a family pass to our local CM that let's us into any participating CM in the country. Gabe loved the morning we spent here.

Meeting Clifford was a lifetime highlight for Gabe. When we heard the announcement over the loudspeaker that Clifford was making an appearance on the first floor I couldn't run fast enough to keep up with Gabe down the stairs. There was a large group of children circled around the Big Red Dog but they were all afraid to approach him. Gabe was not only not afraid to approach him, he wasn't afraid to barge through the middle of the pack, yell "Hi Clifford!" and give him a big hug!

It absolutely made Gabe's day and opened the door for the rest of the kids to approach Clifford.

Probably THE biggest change in Gabe's (and my) life--he started school. This was a difficult decision for me to make. I have a system, guided by conviction and habit. I start teaching my children when they're born and they stay home and learn with me until they're at least 14, then we re-evaluate and go on. So, why was I even considering something different? Because Gabe is different, and I wanted to make sure I was making the decision that was best for him. So, we tried it. Just two days a week with the option to pull him at any time. For a few months I kept things going just because I was benefiting from have two days to teach and do home things without Gabe here. But that's not a good reason to send him to school. I was VERY happy with the people who were caring for him, I loved his teacher, his aides, and his bus driver. Even if he wasn't learning I was comfortable knowing he was safe and well cared for. But, in the last months I've seen the benefits to him. He enjoys the environment and does well in the small group settings. He's definitely improving in many learning areas with the people at school supporting the work we do at home. And it's really nice to not be doing all of it on my own. Gabe needs a lot more interaction and one-on-one to thrive academically and that takes time. He also gets bored with just me, so he learns better when there are more people taking turns with the teaching.

Here's a blurry first day picture

Gabe's 4-K school picture. He has a composite of 29 kids from the 2 classes at his school. He can name about half of the kids on his own and the other half with me providing the first letter of their name.

Gabe's greatest thrill was getting to ride the bus! It took about a month to get all of the paperwork in and sorted to get him on the bus (wouldn't you think that could have been handled during the 10 weeks of summer?--I still have public institution complaints). During those weeks he would beg to get on a bus after school. He cried inconsolably the first day that he was denied that privilege.

With fall comes football. This would be our last of seven years driving up to watch the Huskies.

One of the best things about these games have been the times for family camaraderie. After one particularly warm-weather game we found a great spot on Lake Superior for a picnic.

Grandma trying to get a little bit of the sand off, an exercise in futility.

Gabe not only loves hugging his nieces and nephews, but he rather enjoys getting in trouble with them! Gabe loved having Karissa (and Ellen) with us for the weeks while the guys were in India. There was lots of time for trouble!

Crawling into Karissa's crib when she's supposed to be napping!

Karissa's not the only one who got woken up. Carson and Keira got an early Gabe wake-up call. A baby video kept the cranky babies entertained while the moms scrambled to prepare for a long day.

A neighborhood walk with Lisa, Ellen, and Karissa

Two more nieces! Gabe could not love the babies any more than he does. He just delights in them.

Gabe entered into the Christmas celebrations this year. He hung all of his own ornaments and delighted in pointing them all out to Daddy.

He also had a part in the Children's Christmas pageant at church. He played the part of a sheep and did a great job learning his part, sitting where he was supposed to sit, crawling where he was supposed to crawl, and singing the group songs at the end. He did add a few adlib parts to liven things up--sheep ARE supposed to say "baa" right? Gabe didn't understand why that wasn't a significant part of his role, so he added it. Also, if people bring gifts to the baby, and the baby doesn't open them, shouldn't someone else to it for him? Gabe thought he should be that someone.

Finally, Gabe had his three year check up with the cardiologist for a full exam including EKG and echo. Everything from his repair three years ago was holding fast and working just how it should. I was hoping we'd be done and that all things heart related. However, there's just one little thing... It seems like there's always one more thing. Gabe has one slightly leaky valve. It may be nothing, it may need some attention. I'm not worried about it, though. She said we would look at again in ten years. I don't worry about things that are ten days away much less ten years!

Thank you Gabe, for another eventful and wonderful year. You are my love!!


Marcia Wilwerding said...

Gabe is such a delightful and precious child. "Special" just isn't dear enough to describe him. Though he probably doesn't remember me at all, I still count him as one of my little friends. God bless him and his dear mama, too. :)

Anonymous said...

Thanks for such a clear window into Gabe's world this year. I am glad school is working so well for him. I attended to ieps on Friday, I had to suggest to the mom that our district should provide a bus (her son is being transferred to a neigboring district which can better meet his needs). You should have seen the look from the director... she is not my fan.

Love to you all

Anonymous said...

that is "two" IEPs

Mrs. E said...

Gabe has a beautiful life - so full of love. {{smiling}}

suelmayer said...

I loved hearing all about Gabe. Love all the photos too!!

Barbara Steinhauer said...

Your name was given to me by a friend of mine (a home school mom)and I have so enjoyed hearing about Gabe. We have been blessed with a little boy, Montegomery, who also has DS. I have been really struggling with the future regarding school and your blog is an encouragement to me. Thank You!!