Tuesday, August 16, 2011

Two steps forward, one step back

I brought a bunch of fruits and vegetables today to OT.  We had discussed this last week, and Frank went food shopping with me yesterday to get them, so he actually picked out a few things himself.  He seemed pretty enthusiastic, and he's made a lot of progress recently, so I was cautiously optimistic.

We got him to try some baked potato.  Through a lot of tears, whining, and throwing himself into my lap and hiding his face.  "I...can't...I...don't...want...to!  It scares me!"

I freely admit I was not in the best frame of mind today, anyway.  I had a medical thing this morning (for details on that, you can check out my other blog, http://silverandgoldhealth.blogspot.com/).  My brain is usually a little fuzzy after that, and I sometimes am cranky, too.  These are normal reactions to IVIG infusions, so I'm not real worried about it, especially because they pretty well always disappear by the following morning.  But, mental note: OT feeding sessions are generally not good to have right after IVIG. 

So.  D, the OT, did not seem at all surprised or concerned at today's lack of results.  I, however, felt like my head was going to explode.  I tried to be calm and encouraging, but after a while I just shut up and let D do all the talking.  Really, what I wanted to do at that point was just get up and leave the two of them alone in the room- maybe that would have helped?  I don't know, but I do know that Frank totally feeds off my moods quite often. 

I've been kind of on a high recently with this.  He's using the potty for everything, all day long!  He's eating new foods!  He's very articulate about thigns when they bother him, instead of melting down!  He handles routine changes beautifully!  We're gettin' it done!  He's not going to be that weird kid in his class after all!

This evening, I am depressed about his future social prospects again.

Sunday, August 14, 2011

Life and stuff

I didn't post about OT this week because life got in the way.  My mother is in the hospital with pneumonia.  She'll be discharged tomorrow, so she's doing much better.  But for the first time in a while, I found myself focusing much more on another human than my child. 

The child in question handles mild changes in routine pretty well.  I have purposely established things regarding him to run in a similar manner but not the exact same routine every day.  Like most kids with SPD, Frank thrives on routine.  As D explained to me, when you have a routine, you know what sensory "assaults" are coming your way each day.  You know when and how to "gird your loins", so to speak.  When that routine changes, and especially without advance notice, it's disturbing, because you don't know what's coming your way.

Frank used to be much worse.  During his evening routine, for example, first he had to have a bath, then get dressed, then get a story or two (from Daddy, not me), then brush teeth, then bed, and we had to always say the exact same things as we said good night to him.  If you varied this routine even slightly, he freaked out.  As D explained it, back in the day when I feared a diagnosis of SPD meant he had autism, "Generally speaking, autistic kids don't freak out at changes in routine bcause of their autism.  They freak out because they have SPD, too."

The Vacation We Do Not Speak Of, from two years ago?  He was miserable because he wasn't in his bed at night and naptime, and wasn't at his chair in his kitchen for meals, and these chicken nuggets didn't look like his at home, and when were we going home?

After discussing that in detail with D, and with my husband, we started changing things up.  I started doing different routines at bedtime every night.  I started having him sit in different chairs at the kitchen table to eat, and, once he outgrew his milk allergy, We started bringing him to McDonalds and Wendys, and stopped bringing a baggie of chicken nuggets from home everywhere we went- if it was a place like a diner, where I knew they'd serve chicken nuggets or chicken fingers, we started ordering those for him. 

This went over with the boy, as my mother would say, like a fart in church.  The first dozen or so times we tried to get him to eat Other Chicken, he had a hissy fit and refused to eat it.  Frustrating, to be sure, but, really, I had expected no less from him. 

He also disliked changes in bedtime routine.  "NO!  Brush teeth comes after story, not before!!"  Such small things, but oh so important to him. 

Anyway, in such small steps are changes made.  Frank is pretty flexible about most changes in routine now.  He knows by now that I and my husband have got his back, no matter what.  We've even left him with a few babysitters a few times, babysitters who were Not Grandma, and he had a splendid time with someone new to play with. 

Anyway, back to my original topic, when Mom called to say she was going to the hospital Tuesday night, while I waited for my husband to get home from work, I got Frank his dinner and got things organzied for the evening.  I told him Mimi was sick and I was going to see her in the hospital as soon as Daddy got home.  Even though I'm the one who handles most of his evening routine usually, because my husband works until after 7pm, this didn't seem to faze him at all.  And the times I've left for a few hours, or taken him, to visit my mother didn't seem to faze him, either. 

He's much calmer about changes now than he was two years ago, or even one year ago.  I am hoping this continues when we go to Disney!

Friday, August 5, 2011

Two weeks

That's how long it's been since he's had an accident.

He still hasn't pooped in the toilet at school, though, so I fear it's only a matter of time.

He's ceased complaining about pain when he uses the toilet, and I have not put any Miralax in his food in...hm, six weeks, maybe?  I really think my intial theory was correct- he was complaining that it hurt to poop in the toilet, but didn't hurt to poop in his diaper, because the different angle felt strange to him, and he misinterpreted that strangeness as pain. 

He tried a sugar cookie today.  He was kind of excited about it, too.  The sugar cookies I bought are plain, beige cookies.  Beige to him has come to equal tolerable food in some ways.  Beige does not have little surprise bits in it, like chocolate chips.  He bit into the cookie, and burst into tears. 

"I don't like it!"

I tried to get him to finish that cookie, but he was a mess.  When I got him calmed down, he was able to tell me, "It's too sugary!" 

My son is a salt fiend.  The only thing with sugar that goes into his body on a regular basis is apple juice.  So, while I was a bit disappointed, I wasn't all that shocked. 

D, his OT, says she wants to get him to eat a cupcake- not the icing, but the cake part.  Cupcakes are a huge part of social things for kids his age, and kids will start to notice soon that he eats differently, and, as we know, kids can be so cruel.  I still want him to eat fruits and veggies, but, honestly, as someone who was picked on for virtually her entire schooling years, I agree with D; anything that will lessen the chances of him being an easy target for bullying is really a splendid idea in my book.

Thursday, August 4, 2011

Big Boy Bed

When Frank was about two and a half, we took him out of the crib.  He was getting entirely too big for it, and I feared, the way he jumped around in it, that he would break it.  We had set up the Big Boy Bed (BBB) in his room, but he flat out refused to use it.  "I'm not big enough for it yet," he said.  I set the crib mattress on the floor in his room...and he's slept there ever since, on the floor, next to his bed.  When we go away, we have to pull the mattress off one of the beds and put it on the floor.  We've never flown anywhere with him before, so we've had the luxury of being able to bring all his "buddies" (stuffed animals) that he sleeps with along on any trips we've gone on.  And there are a lot of buddies...I think right now there's about 15 of them. 

Anyway, the crib mattress is starting to show some wear and tear.  And Frank's legs are starting to hang off the end.  He'll willingly lie down on the BBB for story time, or to pretend to sleep, but lights out at night, and the door closes, he has to be on the crib mattress on the floor.  I've explained to him how he's growing, and soon he won't be able to fit on the mattress any more, and he keeps saying that "someday" he'll use the BBB. 

Tonight I spent some time talking about it.  He kept trying to change the subject, but I kept pressing him.  We went in his room, turned the light out, and laid down, and I asked him how does the BBB feel?  How does it smell?  How do things look from up there?  How does your body feel up there?  Each thing he told me, I explained why that was different from the mattress: The sheets on the bed are new, and haven't been washed much yet, so they feel a bit rough.  The BBB makes different noises than the mattress does when you move around on it.  It smells differently up there because his head hasn't laid on that pillow that often- let's put the buddies up there and see if that helps.  (It did.) 

He didn't like talking about all this, and told me he doesn't like it when we "force [him] to do something different."  I explained to him that sometimes we have to do things that are different, and they just take some getting used to.  I told him we know and understand that he has a hard time with doing some things that are different, that his brain works a little differently than others, and that it's mine and Darrel's jobs to teach him how to deal with that.  He didn't say much.

I think sometimes I maybe talk too much, that because he has a really sophisitcated vocabulary for his age, and catches onto things really quickly, that I can talk as if he's much older than he is.  I'm not sure how much he understands when I babble on at him like that.  I guess at some point he'll start to understand and process fully when I explain stuff like this to him.

In the meantime, i really hope he starts using the BBB soon, before I have to force the issue and take the mattress away from him!