More on Luke's Gaming

I know I just posted about gaming, but on the eve of my leaving for a work trip, I let Luke play a little longer on the iPad that I'll be taking with me. Luke's favorite iPad game is something called Battle for Wesnoth. I downloaded it for 99 cents because it looked like another game he played. Chris and I watched Luke play for awhile tonight. We absolutely cannot figure it out. It's a strategy game with a ton of reading. It seems harmless enough from a violence standpoint, with point and click duels that just show numbers relating to each person or elf's strength. Even saying that is as much as I can figure out. All we know is our kid is hooked and we are completely amazed at how he has mastered it. I'm more amazed at Luke's ability to stop playing as soon as I give the word he's played enough.

Sign of the Times

Chris invited one of his high school friends and his family over for dinner last night. Chris was well prepared for the night, grilling dinner dishes and serving them each with a selected beer pairing. It was fun and tasty! Chris grilled fish for tacos and a new and very yummy shrimp appetizer. His food prep is time consuming, but every time I eat the final product it seems worth all the work! Everything was delicious.

Chris' friend has 2 children, a 9 year old girl and a 7 year old son. Our kids haven't spent a ton of time together but as you can see they found a way to bond...maybe? Don't worry, we didn't let them hang out in Nintendo DS alley (convienently located near a wall outlet) the whole evening!

Thumbs Up

We are hoping these thumb guards work at allowing Mitchell's broken skin to heal. The glove and bandages weren't working at all. I know Mitchell has a high pain tolerance, but geesh. Our sitter called her kids' dentist and found out the office keeps these in stock. We're to keep them on 24/7 until he heals and can put them on whenever thereafter. He doesn't seem to mind them, they are actually pretty soft - a little sturdier than the plastic of a bottle's nipple. Anyway, I hope this solution works and we can give them a big THUMBS UP!

A Visit to the Creation Museum

Saturday we ventured to the Creation Museum located about a half hour from us in Kentucky. It was a very pretty day and it's one of the things I put on our list of things to do this year. My reaction to the museum itself was mixed. Privately run, it was pricey even with getting Mitchell and Luke in free. It seems to be run for believers by believers. I thought it might have more of an evangelistic purpose. And last, there sure were a lot of dinosaurs!

I know that's not really saying much. I guess I thought I would be moved spiritually and I wasn't. On the other hand, Chris got a lot out of it. Maybe because I manned the children while he read every sign at the place!

What we all enjoyed most was the beautiful grounds. I'm sure it's even more lovely in the Spring. There were fun bridges to cross and great petting farm with animals of all sorts from wallaby to camel. There was even a zorse (half zebra/half horse) and a zonkey (half zebra/half donkey) born of the same donkey father. We were told they bred zonkeys to be heartier and better dispositioned than each animal is typically. All in all, I'd say it's worth going to. I'd just recommend looking for a deal or a coupon when you go.

Ouch!

Mitchell has become an avid thumb sucker. The therapists at school actually think this is a good thing because it shows coordination. But ouch! He sucks and sucks and sucks - getting calloused and recently breaking skin.

Half the time he's home I've begun to have him wear gloves. He doesn't like that one bit. Band aids don't work and we're trying to get him instead to take a pacifier. I have come across another Mito kid who is around Mitchell's age and she has the same problem. I'm hoping this phase passes quickly!

Getting More Comfortable with Special Health Needs

I don't know why it's just dawning on me - most of us don't know what to do when faced with a person who is different because of physical or mental disabilities. It doesn't matter if you know them personally or come across someone when shopping, at school or at church. I also don't think most people know how to interact with the caregiver of a disabled person either.

Exactly on this point, I attended a conference this winter directed at parents of special needs children and their families or other supporters. It was put on by a church and a counseling organization that studied 12 families for one year to see how they were affected. They even passed out a handout of what to say and not to say to families. I can periodically share such tips. But for now, here are a couple of the presentations from that session.

Whether you take the time to view or not, here's one thing we like. We like when Mitchell is included and not ignored. For instance, I absolutely love when restaurant servers ask to take Mitchell's order. They are treating him just like any other child. I always thank them for including him. You wouldn't believe how many servers just ignore him!

It's also really okay to ask what is affecting Mitchell. It shows us care when someone says to us, "I hope you don't mind me asking, but can you tell me about his condition?"

I don't like it so much when people try to be helpful but it comes across as critical. There is a difference. Like the woman who rushed up to pull down Mitchell's shirt that rode up upon just getting placed in his wheelchair. She said, "Don't you see he's getting cold?" I unfortunately take these interactions personally, but usually wind up tossing them aside because that person may be dealing with something similar or also difficult of which I'm unaware.

One last point, we sense conversation about Mitchell is just as tricky when you've known us a long time. Don't worry, we sense when not to go on and on. But it is nice to be asked about how he's doing regularly rather than never bringing up his health. And volunteering to help us is always received! Mitchell's Uncle Terry always rushes out to meet us when we arrive at family events taking a turn at carrying the wheelchair and Mitchell's necessary supplies.

I sure hope this is helpful! I come into contact with more special needs people than most and I admit I sometimes struggle with what to say myself!



And another one at:
http://vimeo.com/user5775341/ready-set-grew-presented-by-steve-griebling-and-gail-bren

A Weighty Matter

Mitchie is growing! He weighed in yesterday at 31 pounds - which calculates to be the 11th percentile for weight. He had been below the chart for the past 2 years. We just weeded outgrown clothes for the first time too in 2 years. It seemed he would never get out of 18 month - 2 year size clothes. He's in 3T and even some of Luke's old 4T shirts.

All this means eating has gone better. He still has a limited diet of mostly stage 3 baby food and oatmeal, supplemented by Pediasure to round out his nutrition. There are still times when you just can't get him to eat, but they happen less. We are so glad we resisted getting him a feeding tube!

Admittedly with weight comes increased difficulty. A non-ambulatory, totally reliant child who gets heavier and heavier has some downsides - like Mommy huffing and puffing when carrying him up 2 flights of stairs. And, we'll mourn when he outgrows the hanging jumper he's in a lot! But an appetite and growing is oh so normal. Yay Mitchell!

Quotes of the Day

"It's unfortunate and I really wish I wouldn't have to say this, but I really like human beings who have suffered. They're kinder."
Emma Thompson

I think we suffer some by nature of being special needs parents. But we all suffer, don't we? Sharing this today as encouragement to myself to consider myself "kinder".
 
"Be more concerned with your character than your reputation, because your character is what you really are, while your reputation is merely what others think you are." 
John Wooden

A friend posted this on facebook. My internal compass has been going haywire lately and this focused me on staying true to myself regardless of what others think.

"No one - not rock stars, not professional athletes, not software billionaires, and not even geniuses - ever makes it alone."
Malcolm Gladwell, author of Outliers

I've read Outliers (good book!) I get so focused on tasks and getting things done, sometimes I temporarily neglect relationships. No one makes it alone. Reminds me of my post on Whoville.

Good encouragement. But when all else fails and I have a reflective or less than super day, I rest knowing this is my joy...

Valentine's Day is Coming!

Yesterday I tried to get my Martha Stewart on, working in advance on the boys' Valentines. I'm not so much into the store bought variety. Most of all it was a fun project to do with Luke! Hope their classmates like them!

New Equipment for Mitchie

We got Mitchell's birthday presents early - he turns 4 next month! I networked with a mom we met through the Cincinnati Association for the Blind and Visually Impaired and bought a couple pieces of her used therapy equipment her son Noah has already grown out of. We can't thank this family enough! Each item retails for around $2,500 and buying it second have saves us the hassle of insurance and lots of money.


The first item is a new gait trainer - a purple Pony. Mitchell grew out of his first one which is a size 0. This one is a size 2 and just a wee bit big for him, but his feet touch the ground and he'll grow into it soon enough. We are exited to see him cruise our hardwood floors again!

The 2nd piece of equipment is a transitional stander. Mitchell can be seated in it, then move to standing position. This helps him bear weight on his feet and legs. He spends a lot of time at school in a stander and we know it's also helped his upper body strength. Mitchell fits in this new-to-us stander quite well in the sitting position, but we still have to tweak it to make it work for him standing.

This equipment is in great condition and will be great for Mitchell!

Fabulous Homes Here

Why am I just now finding out about this website? So fun to see famous houses and so many nicely designed interior shots. Makes me want to redecorate right now!

Check it out - I know you've been wondering what the back of Billy Joel's beach house or Halle Berry's bedroom looks like. You can even find shots of the seemingly pristine California home where the infamous Charlie Sheen resides or once resided.

Introducing Janine's Before & After

We've been blessed with great nannies to take care of the boys. Our current sitter is fabulous because in addition to be so caring and attentive to the boys, she's also a terrific organizer. She's been working her way through our home using her organizational talents and we LOVE it!

You might be thinking that I seem pretty organized, what could she possibly find to organize? Ha, ha. I have said for some time I portray the veneer of organization - on the surface I seem completely together, but look into my purse, trunk or drawer and uh, oh!

So why would I broadcast this secret deficit now? Well Janine is terrific and I really think she would make an amazing professional organizer. She has the right balance of taking charge - helping you make decisions about what to keep and what to get rid of - and respecting your preferences. Like with me, I'm sure she'd love to fine tune our closets with special bins and totes, but I don't see why we need to buy more plastic thingies and she's cool with that.

As embarrassing as it is for me, here's a peek at today's project - our master bath cabinets before and after:

Not too long ago she also worked her magic in this drawer of craft stuff.

If you need something in your home organized for a reasonable cost, let me know and I'll get you in touch with her! She's even moved people into their homes for them.