SMA Awareness Day 4-We did the U Mall

These are Casey's spoils from our trip to the University Mall today.  Casey technically had summer school today so this morning when Ashley got here they did their thing preparing for the outing.  Last week Casey had a meltdown about going somewhere in Milton.  He really wanted to go to the mall.  I told him that if he was good this weekend that he could go but he'd have to have me and Colin tag along with them.  I think he was okay with that because he was pretty good this weekend.  He was supposed to pick somewhere in Milton for a plan B but I don't think he actually did.  Oh, and he had told us that if he couldn't go to the mall he just wanted to stay home.  He is a stubborn one!!

Anyway, we headed out and got there around 11:00.  Ashley, Julie and Casey went their way while Colin and I went ours.

Our first stop was FYE.  Ended up buying I Frankenstein and Oz the Great and Powerful DVDs and a wii Lost in Blue Shipwrecked.  We looked at so many movies and wiis and had fun browsing.  Then we hit FYE.  There aren't a lot of wii Us that we don't have that are appropriate so it was tough.  Ended up getting a Chicken Blaster (regular wii) for $2.69.  I'm sure it will be dumb but entertaining for an evening or two.  Got a used Ben Ben Omniverse for wii U.  If we don't like them we can return them within 7 days.

Colin and I wandered around the whole mall a couple of times and NEVER heard Casey.  It was weird.  Called Julie.  Finally got her and they were checking out at Sears.  That's why we didn't hear Casey because Sears is set back a bit and a big store.  Casey picked out a flannel shirt and a hoodie as you can see from the pic.  The hoodie has earbuds built in!  Bonus!  Now I just have to remember NOT to put it in the dryer.

Casey wanted to drive his chair to American Eagle so he puttered along.  In the meanwhile Julie bought some chocolates from the Lindt store and I got some pretzel bites from Auntie Anne's Pretzels.  They were more than delicious!  If you know me, around lunchtime I start to get woozy if I don't eat--and I usually crave protein but these did me fine until I got home. 

Casey could not decide what he wanted at American Eagle so we didn't buy anything.  First he wanted blue jeans, then gray jeans, then dark jeans.  I'll just buy him some online and save the fuss.  Plus, I can look at his other ones and see what style they are because we like they way they fit. 





Got boys settled in the living room.  Nurse Julie played the Ben 10 with the boys.  I took a 'read' and a nap.  I started Where'd You Go, Bernadette which AC lent me. 

Brought Jaxon out for our traditional post nap Frisbee throwing.  Helped AC play the Shipwrecked wii game.  It's kind of a boring one but for some reason Colin is into it.






Casey's DynaVox came back today, whoop!  We sent it in on July 25th, so that's not bad.  All they had to do was restore it to new.  The paperwork said something about a virus so the software had to be reflashed.  But, now, we have to back up the pages he's using now (he's been using Colin's) and then put them on the new one.  Easy-peasy, right?  Julie and I are ready to take it on tomorrow.

Mama gets out

Early this morning I did my usual thing and start a load of laundry.  Or, I should say, I tried to start a load.  The machine made it's dings, but no lights came on and it wouldn't run.  ARGH!!  Gene did some Googling and emptied out the drain and it worked!!!   

Yes, I actually got out of the house today and out of Milton, whoo hooo!  I went to Essex Junction and dropped my eyeglasses off to get reshaped from when I stepped on them in the middle of the night when we were at the Reilly's house in mid May!  Went to the credit union and picked up my new debit card (our bank account was hacked a couple of weeks ago and we needed new cards with new numbers).  The teller had me use the ATM machine to make sure the card worker.  What a trip!  I haven't used an ATM in probably 15 or more years!!  I guess I don't get out much, and when I do get out I use my debit card.  I was nervous that I wouldn't know how to use it but I guess it's like riding a bike.  Then I hit Big Lots.  I managed to spend $50 without really buying anything, ha ha.  Let's see, I bought a set of pool floats, a solar butterfly for my front garden, some Swiss Rolls (I always crave junk food when I go to Big Lots--not sure why), shower curtain liner, table cloth, and a dog leash.  I bought Casey dental floss, lip balm and new ear buds (neon green) and I found Colin some of those reusable ice cube thingys and lip balm.  And yes, they were thrilled!!  Oh, Colin likes to use "hot packs" in the winter and "cold packs" in the summer so these ice cube sheets are perfect for him. 

Headed home after that.  I was probably gone 2 hours at the most but it was nice.

Casey had just finished his first half of summer school with Ashley and was on his break.  Colin was watching a movie and getting ready for Tami to come for his school.

Casey wasn't the most cooperative and I didn't get to hear much of what they did, but we'll see Ashley on Monday and catch up.  Not sure of their outing on Monday.  Casey got obsessed on riding the city bus so he wouldn't tell Ashley where else he was interested in going.  That is something we had talked about but couldn't convince Casey that it was something that could happen right away.  We have to investigate when the bus comes to Milton, where it goes, when, and when the handicap bus comes here.  Nancy discovered some program that could make this happen so we'll have to read up on it and see how to get this going for Casey.  He rode the city bus a short way several years ago, in Burlington, and has always wanted to do it again. 

Tami (SLP)came for Colin.  We spent much of the time positioning the table and the DynaVox and his switch.  Maybe by the time school starts again we'll have the best positioning down pat.  Since we got the new beds right before school ended we hadn't had much of a change to get used to a new configuration and routine.  Struggled to get Colin to write a sentence...lots of owws and switch repositioning but it's all a learning curve for Tami.  She hasn't worked directly with Colin since maybe 2nd grade???  She's worked with him on Math via VGo but Priscilla was doing the direct things with Colin while Tami was seeing him on the VGo.  So this is a good thing because she'll have a better understanding of him and how complicated things are and can bring that back to the team so have a better sense of Colin's skills.

Aunt Chris leaves for her Alaska trip tomorrow so she was here this afternoon to hang out and say her "Goodbyes" "and "I'll miss yous."

Sorry no pictures today.

summer school flop and Costco

Colin and I tried to do some school today.  He was not so cooperative, sigh.  He has perfected the "zone out" look.  And, we had a really hard time getting his switches to work right.  The other day, we had minimal issues.  I just don't get it sometimes.

I gave up on the DynaVox work and decided to do some PT/OT.  He worked on spilling the beans.  He used his slings (though I need to order him some Angel Arms) to suspend his arms so that he could concentrate on moving his arm, hand and fingers to rock the bean pot and make it spill.  He also has to use his brain to plan and trial and error to make this happen so I'm satisfied that he was at least using his brain.  Then I put his legs in the slings and he moved them all over the place while he watched something on Netflix.  That's about all I got out of him today. 

But he looked cute and he was wearing a tee shirt he received from some kiddos in MA that are part of Hugs and Hope.  They won an AAU basketball tournament and the all signed a tee shirt for him and sent him letters.  I took a couple of pictures of him in his shirt and sent them to the mom of one of the kids.  See how cute???!!!

Casey had his outing with Ashley and Nurse Julie today.  I think it went okay, although Casey kind of froze (well, started vocalizing loudly) when he was supposed to ask for help at Costco.  But he got through it the second time.   He wanted to drive but it was really busy so he shut off his chair, ha ha. 
After they got home, they "processed" their outing and then he was done for the day. 

Summer school starts

First day of summer services for Casey.  And, for Colin, too, but I'm doing them--he's not going to the school like we did last year. 

Julie had Casey all ready for Ashley when she came at 9:00.  Most of the time was spent on chatting and Google mapping and looking at and saving images of whales.  Hopefully, they'll get into the swing of things and get some good work done.  Planning on having outings on Mondays.  They'll stay pretty local since we'll be using our van and Julie will be driving and Ashley doesn't know Casey very well.  They'll be able to hit Costco, Hannaford, the library, etc. 

Colin and I did our things.  I hooked him up to his DynaVox and played around with his switches.  He's losing movement in his hands and it's always different each time we use his switch, sigh.  He did pretty well with his English/writing.  We talked about Wonder and he wrote a few sentences about what we read last night. 

Math for us was kind of a bust.  Tried about the DreamBox online that the school has licensed for a bunch of the kids to use independently.  I'm not a fan.  I didn't like directions nor the sections that we opened for Colin, nor the teaching style.  I'll plug away a bit more with him on it but may end up doing something else altogether with him.

We also did a science experiment.  We made Zombie snacks.  Added vinegar, milk and red food dye together so it curdled and made lumps which were zombie snacks.  Colin had no interest in the science behind it but liked doing the experiment.

I also forced him to play tic tac toe.  He doesn't like it and doesn't get it at all.  I'm trying to get him to predict and plan and he is not much for it.  He really needs to work on that skill and playing is one simple, quick way to do it but we've tried over and over again but he doesn't get it.  I will keep trying and maybe one day it will click and he'll actually like it. 

He picked tic tac toe over Scooby Do concentration, so I guess that tells us how much he likes concentration.  Just trying to get his brain to get out of a rut and do some real thinking.  He smart and has a good memory but only tends to use these traits when it suits him, ha ha.

What a day

Finally I am getting to sit for more than 3 minutes at a time.  Been going since 7:00.

Boys had summer school today so we had to get them ready.  And, yes, I had two nurses today; one for each boy, but I still ran my butt off, with phone calls in-between, and the dog and the cats, sigh.

I'm very grateful for the boys having summer services but man, it's a lot of work.  Both boys are doing their services at home, for the most part.  We'll have 5 different providers rotating in and out Mondays through Thursdays for 5 weeks.  That doesn't leave us a lot of time for gallivanting so we'll see if we have to take a couple of days off.

I feel like I have to be there for almost every second.   Finding things, positioning, filling in gaps, coming up with things to do, fixing "ows", etc.  I guess I can't quite explain it but I sure feel it.

Today Casey, Mel and I tried setting up Casey's DynaVox to turn the 'yellow room' TV on and off and have him use the channels.  We got pretty far but we're not done.

Then, Mel worked with Colin while Julie and Casey ran over to her place to pick up some tables and an awning for our tag sale.   We tried to get Colin's DynaVox set up to do the same in another room but it's different version and we got a bit of it done.

For summer school this year we're also working on getting the boys to do more activities together and communicate more with their DynaVox's. Today we attempted Go Fish!  Well, that took a bunch of programming.  We made a page with numbers and some phrases and put them on both boys devices. Then we had to teach them the game and where things were on the page, etc. Sounds easy but the game took probably over an a hour and a half!

Right after summer school Deb from Biomedics came with Casey's new AFOs.  So we had to try those out and see how they fit.  One just needed a bit of stretching.  He also got new sneakers and 4 pair of SmartKnit socks.

Then it was Colin's turn to get casted for new night time let braces.  He actually did pretty well.  His heartrate only binged out at 165 a couple of times.  Maybe after 8 years of her coming he's finally realizing that she doesn't do anything that hurts.  It probably didn't hurt that Julie was playing the Hardy Boys wii with him.  Casey was watching his football and keeping an eye on wii.

Then the dog needed to play Frisbee.  Then there were lots of 'ows' and grumps, etc.  Whew.  Glad the boys are in bed and Gene is reading tonight.

Tomorrow we have no school because Casey needs to go to The Medical Store for a power wheel chair appointment.  And, we have to start working more on the tag sale this weekend.

Oh, yes, I put the tag sale up on Craig's list and the Milton Front Porch Forum.  Julie made us some colorful signs we'll put up bright and early on Saturday.