It's like a heat wave

I was thinking that it was really warm in my kitchen. (we have electric heat so each room is controlled individually)  I went over to turn the temperature down, and discovered that it had been turned up as high as it will go!  No wonder I thought it was hot.  Knowing my culprit, I went to check Blake's room heat.  Normal.  This time.  He loves to mess with those things. 

A couple summers ago, I noticed Blake's bedroom was really hot.  He didn't have a window air conditioner (or ishner, as he calls it) at the time, so it was normally warmer in there.  But it was oven-hot.  I checked the thermostat and discovered he had cranked it up as high as it will go.  We remedied the situation by flipping the heat breakers off, so even if he turned it up, no harm done. 

He hasn't done it in awhile, but last week one day he turned up the kitchen and his bedroom heat. Those are the ones that he can get to the easiest. I didn't even scold him for it, thinking it was a one time thing.  I guess I'm going to have to make a "Hands off" sign or something. 

Schedule changes or throwing a wrench in the works

As anyone who has a child with Fragile X knows, changes to routines can wreak havoc.  We are in the midst of one of those schedule changes and it has caused a lot of perseveration and need for reasurrance.

What is it?  Something that would make any typical school child gleeful.  Extra days off school.  We were off school yesterday and will be off on Monday as well. 

We already use a picture schedule in our home, and this helps a lot to reduce anxiety about what comes next.  However, special cases like these require a special support. 

Thursday evening, Drew was starting to worry about this weekend.   He heard everyone talking about the long weekend.  So it worried him.  He asked me as soon as he got home, "Where I go?"  I made up a five-day calendar that said what day of the week it was, whether there was school or no school, a picture of a house with the names of who was going to be home that day inside it.  He likes to know if Daddy has to work that day or will be home.  I made a frame that said "Today is:" and placed it over the correct day of the week.  Now when he asks, "Where I go?"  I remind him to look at the calendar on the fridge.  

I have Boardmaker, which is a computer program that I could have used to make this all pretty, but I was in a hurry and Blake was already on the computer.  I don't mind showing you my elementary work.  :) 

That is just part of the schedule that I scanned.  Of course I did Sunday through Tuesday as well.  It only took me a couple minutes to throw together, but it has helped. 

Say wha??

On Thursday, I called a car detailing place about getting our car cleaned.  I told the guy that Eric had transported a case of fish in it.  The box leaked, and now the car smells stinky.  The guy said he thought he could get the odor out.  Fine and dandy.  While I am explaining the situation to the guy, Drew comes up to me crying.  I got off the phone quickly to see what was wrong. 

"No fishing!" he said.  I was like, "What?  Ok, no fishing."  And he said, "Where's Daddy?" I told him Daddy was at work.  He said, "No fish?"  I said, "No fish."  Still not really getting it. 

A little while later the phone rang and I was talking with Blake's aide when Drew came up to me crying about fish again!  While I was talking, I wrote NO FISHING! on a piece of paper.  He calmed down. 

Of course the phone rang several times that afternoon, each time setting Drew off.  He'd cry about fish or fishing and ask to see his paper.  I explained to him that we weren't going fishing, that nobody goes fishing in the winter because it's too cold.  (we're not even going to bring up ice fishing!)  I told Drew he never has to go fishing if he doesn't want to. 

I still don't know why it was such a big deal, but ever since then, occasionally he will get really nervous sounding and say, "No fishing, right?" 

Eric goes fishing in the summer a lot and sometimes tries to get the boys to go along.  Drew rarely wants to go, but Blake almost always wants to go.  Eric never forces him to go, so I am not sure why it's a big deal. 

Plenty of Socks

See these socks?

What is so special about these socks? you might ask.  Nothing in and of themselves.  But they are Blake's socks.  Have I mentioned that Blake has very sensitive feet?  I don't think I have.  Anyway, in the mornings, if I help him get his socks on, I have to be very careful not to touch his feet with my hands or he squirms and kicks me. 

So that is why I found it humorous when last night I went to check on him in his bed.  He was wearing all of those socks on his feet.  All twenty-one of them.  And it looked like this:

except his feet were also jammed in there amidst the twenty-one socks.  He has trouble falling asleep, you see.  So he entertains himself with what he can find.  This case being socks.  And it's not the first time he's done it.  I guess it gives him some sensory imput.  He is tactilely defensive but apparently seeks deep pressure imput at the same time.  Believe me, there was plenty of deep pressure there.  

Working on independence

Since I am starting to feel more like my normal self, I am able to do more with the boys than just the necessities.  I have been wanting to work with them on gaining more independence, especially with self-help skills.  They are constantly asking me for snacks or drink refills or whatnot.  I bought this refrigerator drink dispenser and filled it with water.  I showed the boys how to use it.  Blake was thrilled!  He loves it and gets refills for his little plastic mug all the time.  Drew hasn't used it at all, because he prefers milk.  My goal for him is to get another dispenser and fill it will his daily allotment of milk.  When he's used it all up, he'll have to switch to water. 

Here's Blake using his new water dispenser

Even though Drew won't get his own water, he's been more willing to do things himself.  For instance, this morning he wanted toast.  I told him he needed to get the bread out.  He got it out of the drawer and tossed the bag on the counter and said, "There--get my toast"  That sounds pretty rude, but I think he just was telling me that he thought he fulfilled his job, now he wanted me to do mine.  Unbeknownst to him, I decided it was his job to make his own toast today.  I did open the bag, as he has trouble with the twist-ties.  I am changing them over to a clothespin that he can handle.  I instructed him to get out two pieces of bread, showed him how to plug in the toaster and he put the bread in and pressed the button down.  I buttered his toast today, but I am going to transfer some squeeze margarine into an easy to squeeze bottle like this:

I got that great idea from my friend Cindi, from Mrs. Rogers' Neighborhood.  I think the regular squeeze bottles are a little tough for X-men with low muscle tone, and these are nice and squeezy.  :) 

I also attribute Drew's willingness to try doing new things to his drug trial medicine.  For other interested FX parents, he is on 10mg of Arbaclofen 3x per day.  We have seen a lot of positive things from him since beginning the open label.  There are times when we see his anxiety peek through, but overall we are pleased. 

These are just little things and there are thousands more ways they need to learn to take care of themselves, I am excited to see them doing what I have worked on so far.  I want them to feel capable of caring for themselves.