A Tag and a Snow Fort

Chef has often explained to me that his "brain just doesn't think of stuff." It hasn't been long since Chef finally started accessing a list of other things to do during his downtime besides sleeping, but even that hasn't been happening for very long, nor is it consistent. His list isn't long yet, mostly because he seems unable to think of activities to add to the list but also because when we discuss list options, it takes much prompting before he'll actually write something down.

One of the things that Chef tends to do in the evenings is to sit in the living room wrapped with his blanket and play with the tag on his blanket. Usually I prompt him within a couple of minutes to shift to another activity. Tonight I decided to glance at the clock and not offer any prompts at all, just to see how long Chef would continue to sit and do nothing other than play with the tag. I was curious whether he would tire of it and would move on to another activity on his own. Twenty two minutes later, I couldn't keep quiet anymore and asked Chef if there was anything else he could think of to do other than playing with the tag on his blanket. Twenty two minutes. 22 - and who knows how long it would have continued had I not said anything. These are the types of things that many people don't seem to understand about Chef because they see him in different environments where the flow of his day is led by school schedules, what other people are doing, etc. Left to his own, however, it's a very different world.

The bulk of Chef's unprompted activities now involve napping, relaxing in the tub, and reading in the living room. It's a far cry from the not-very-long-ago days when Chef's downtime goal was to sleep away as much time as possible. I'm happy to report that this winter Chef did something remarkable - he built a snow fort!  On his own!  One day while waiting for the school bus, he just started building a fort all on his own. He worked on it almost every morning for 20-30 minutes! Every day when he came home from school at noon, he'd give his snow fort update and would frequently look out the window throughout the afternoon and evening to check his fort. One evening he even went out on his own to work on the fort! I realize this may not sound like much to some folks - but for Chef to be doing something like that on a regular basis, and something that was of his own initiative, is truly heartwarming and nothing short of remarkable.

Chef has done amazingly well recently. He's been kind and helpful and has used appropriate language and worked on communication skills. He's been reading voraciously, engaging in conversation when we watch documentaries or TEDTalks in the evening, AND he has washed his bedding recently!!

Today, however, is day three of Chef being "off" and he's now left for school without eating and without anything for a mid-morning snack.

Sunday was full of many more reminders than are usually needed, particularly for a relaxing Sunday. He seemed to be on the verge of whining most of the day (but didn't go there:-) ), seemed to have trouble focussing on what he was doing/how to do it every single time he'd go into the kitchen to get himself a snack/tea, and otherwise spent the bulk of his day sleeping. I considered waking him at one point, but was my brain was glad for the break and I'd hoped the sleeping would reboot his system from whatever was going on. At one point the kitchen timer went off and he came to the living room and asked if he could turn off the timer. I asked him why he was asking permission for something like that. He said he knew he shouldn't turn off a timer that someone else had set unless he knew they'd heard it. That's great! I was pleased that he knew that. The concerning part was that I hadn't set the timer. Chef appeared confused and angry when I pointed that out (facial expression! and no meltdown!). At that point, I started trying to figure out what on earth had happened to cause all of this. Change in season? That's definitely had an effect over the years. Having a glass of soda pop a couple nights prior? Chef's behaviours have often been linked to what he's ingested, though once in awhile I figure "maybe it's ok by now" and offer something bizarrely different for him, though I did so in the evening with the idea that he'd sleep it off - it seems odd that it wouldn't effect him til a couple days later though.

I'd initially dismissed anything from Saturday since we'd spent the day at a CPR recertification class and Chef had spent the day in the back of the room reading and playing a computer game - though I did remember thinking it was odd that he said he couldn't wait to go home and nap because he was so tired out from the day. And then I realized it! The few times I turned to look behind me to check in with Chef, he was on the laptop. And when we broke for lunch, he proudly showed me how many buildings he'd created in his game. And when we'd finished our lunch, he went back to the laptop. Aha!! I'm guessing he played that computer game for around 4 hours!!

When Chef is left to just his own ideas on how to fill his time without any suggestion/guidance, eating and sleeping are his default with the recent addition of reading. If he runs out of books that are in his immediate area of interest, he will typically again default back to wanting to nap or eat rather than exploring other books or coming up with other activities. He is pretty easygoing now about activities that are suggested to him (as opposed to when he was younger and didn't want to leave his room/our house), but he still struggles to independently think of things to do. We've tried creating lists for him, and I had pictures for him when he was younger, but as many of you know, Chef is not fond (uncomfortable at some level) of accessing visual helps/prompts/information.

Yesterday was better than Sunday, and this morning I couldn't tell if there was still residual stuff going on or whether it was just his average, typical morning struggles. I'm hoping that by the time Chef comes home from school today things will have levelled out for him.

There is a lot of repetition in our house. As another mom worded it, my son and I need to frequently figure out what he was thinking/not thinking, find a solution, and work on the action plan. Repeatedly.  Each task he does throughout the day has had to be broken down and addressed. Repeatedly. Chef is a brilliant young man in many areas - he also struggles with not understanding and/or accurately perceiving some things in this world, has difficulties with remembering what he needs to do, has difficulties with organization, and has difficulty "thinking on his feet" when something unexpected happens. Chef continues to not want to have any disabilities but there are occasional days when he seems relieved to be reminded that something he's struggling with is typical of someone living with autism, for example, and that he's not the only one.

I am happy to report that, with much repetition and consistency over the years, Chef isn't requiring quite as much repetition as previously needed when it comes to some of the day-to-day routine. He is now capable of following (though it still doesn't necessarily happen on a regular basis!) the steps to brush his teeth, have a bath, use a toilet, wash his hands, get dressed, put on outerwear, and make his bed without any how-to reminders. He is consistently able to successfully make a pot or cup of tea. He sometimes forgets to turn off the stove/oven, and if he hasn't made something in awhile (such as rice) he'll sometimes forget how to make it and instead of looking at instructions will just guess, but Chef is otherwise capable of preparing a meal. He still has difficulty with independently gauging amounts and will still eat huge amounts of food at times (a large yogurt container full of lentils for a snack) when not reminded otherwise of appropriate amounts. Shovelling snow no longer needs how-to reminders, nor does putting out seed for our neighbourhood birds.

There are still many winter mornings when Chef walks out the door with only one eye clearly visible and his other eye partially hidden by his balaclava before being reminded that it needs straightening. This morning at -42 (with windchill), he still needed a reminder to wear his hat and scarf to the bus even though he'd just been reminded a few minutes ago when he'd been out for a couple of minutes just prior in order to keep his routine before I called him back to wait inside til the bus arrived (Chef's goal time to be outside in the mornings is a few minutes BEFORE his bus arrives, otherwise the bus will be sitting/waiting while Chef runs around inside the house quickly getting ready instead of getting ready beforehand). He almost always puts on his jacket now AND zips it up! (***Remember when Chef wouldn't even put/keep on clothing at all?? Hooray for wearing clothes now!!)

Visual and verbal how-to reminders are still required for chores. I'm happy to report that Chef is starting to do these more regularly and is starting to initiate them on his own! Chef's internal sense of what needs to be done to have a healthy space for himself is evidently lacking at this point, but he IS presently on-board with doing half an hour of weekly chores and with cleaning up the kitchen on a daily basis with visual and verbal how-to reminders (and without the meltdowns he used to have over this!) Chef still requires visual reminders as to how to do a chore and verbal reminders along the way, but his willingness to start a chore and accept guidance regarding a chore has definitely come a long way.

We continue to work on "up in the morning and ready for the day" - it's slowly coming along. One of the things that I believe has helped tremendously lately has been to limit the time that Chef now has available to him to get ready in the mornings in order to narrow his focus to what needs to be done to have a successful morning. If Chef consistently uses his time appropriately (focusing on what steps are required in order to get ready without meltdown/backlash at mom), more time is added so Chef can enjoy a slower pace and/or a relaxing addition (reading, extra coffee, etc.) to his morning after getting ready. This has been much more successful time-wise as well as growth-wise compared to mornings where Chef has had over an hour to get ready. This also gives Chef all morning to relax in his room from the time he wakes up (which can be anywhere from 5am-7:30am, with Chef going back to sleep most mornings) til he needs to start getting ready.

Chef now almost always remembers to say, "Hi Mom. How was your morning?" when he comes in from school. We've recently added, "What did you do this morning?" and he's started occasionally saying, "Oh, that's good" after hearing my response. Sometimes he'll even ask a further question - this is brand new and wonderful.

Anger. Again.

Today Chef attempted to make black bean brownies. He's frequently talked about this since I initially showed him a recipe and suggested he talk with a friend of mine about details because the recipe I'd come across didn't explain whether or not to drain the can of black beans required.

Chef did eventually ask my friend when reminded, and I don't recall whether it was my friend or Chef who'd written down the specifics of the recipe, but Chef happily came home with the detailed recipe in hand.

Chef's attempt at black bean brownies didn't work out today - at all. After  close to an hour, the contents of the pan were still extremely soupy. When looking at the pan, I asked Chef if he'd followed my friend's instructions about draining the beans. Chef already had that dark, angry look about him when he growled a "no" in response. I thought about how to handle the situation - the "soup" could be put into a container and used in smoothies I supposed, but I knew very well that Chef wouldn't  relax until he'd inhaled the chocolatey mixture and the last thing he needed would be to have all those ingredients marching through his system in one fell swoop. I told him we'd have to dispose of the brownie soup, explained the reason, and said he could try again  another time using the full recipe. Chef kept saying he could just cook it longer. I shook my head and  started to say that we all have times when we're trying something new and it doesn't work out, but Chef stormed off in a huff.

Since that moment, Chef has responded with that same dark, angry cloud to almost every interaction this afternoon and evening. Right now, he's outside snarling after I told him it wasn't acceptable to leave feces in the toilet bowl - his initial response was that it wasn't his fault because he thought he'd flushed. I said I understood that but that it was still his job to make sure the bowl is empty, especially when there's a sick person in the house. Chef started yelling and spitting words and continued verbally escalating as I walked away. I know Chef well enough to know this was a sign that he wasn't going to calm on his own. I turned and put my finger to my lips with a quiet "shhh, calm" but to no avail. I put my finger and thumb on his top and bottom lip, accompanied with "shhh, calm" and he immediately pursed his lips together and he immediately became quiet but started bobbing his head up and down and sideways. I stepped away into the next  room and reminded Chef that he needed to clear the toilet and deal with his anger immediately and if he couldn't do it inside, he'd need to take it outside - he flushed, stormed down the hall, put on his outerwear (something he wouldn't have bothered doing in past years!), screamed at me, and slammed out the door.

***********
Chef went for a short distance at a half-jog sort of pace, came inside and was still not calm enough to be inside so went for a run then came in and actually apologized and was able to have a reasonable discussion over what had happened. He's now calmly folding paper cranes. This is a very, very quick turn-around for Chef, who has often held onto his frustrations for hours/days - I'm hesitantly hopeful this is a sign of growth and positive things to come regarding managing frustration/disappointment/anger.
 

Many of us have explored various sensory enhancements with our children. Chef has had a myriad of items over the years and, though none of them have survived to date, Chef has certainly shown appreciation of their presence.

For parents who might be new to the idea of using sensory enhancements, here's a great link:

http://www.sensory-processing-disorder.com/sensory-room.html

It's been a challenging holiday season. Urinating in the bedroom (which hasn't otherwise taken place for months) started again a few weeks ago, evidenced by the large, urine-filled vinegar bottle discovered in Chef's room - I'm glad a container was being used.

 On the morning of Dec. 20th, there was an all-too-familiar-and-really-bad odour coming from Chef's room. Nothing was visible, which made my heart sink with the thought of having to check the carpet and vent, but as I followed my nose I found the source - four incontinency briefs stuffed in the 3-inch space under Chef's desk. I called the school to let them know Chef was accessing someone's briefs. When Chef arrived home he made it clear that he was furious with me for contacting the school. I reminded him that it isn't cool to take someone's briefs and even less cool to use them to hide urine in his room, and that he needed to take the briefs out to the garbage immediately. Chef stormed up to his room, came down a few minutes later with a bag of garbage, and stormed out the door. When he came back, he sullenly had a bite to eat then stormed back up to his room. Hours later, Chef had made four trips to the washroom but didn't answer when I called from the bottom of the stairs so I went upstairs and reminded him through his door that his respite family would be picking him up shortly and he still had things to do to get ready for Christmas. I heard what sounded like a book dropping on the floor - I asked Chef if he'd heard me and heard a low 'yes' through the door. An hour later Chef still hadn't come down so I called him from the stairs. "I know!" was the response from his room. Chef still didn't come downstairs and didn't come down when called for supper. At 6:30pm, Chef slowly came down with a very grumpy look on his face. He slowly started getting a rag and cleaners out then asked if he could have supper. I reminded him that he was supposed to have supper but had chosen not to come when it was ready, then asked Chef if he was going to get himself a quick snack before getting his chores done. Chef growled and humphed then started slamming around in the kitchen. I reminded him that he could be appropriate or take it outside til he was ready to be appropriate inside. Another growl but no more slamming, then Chef moved on to whining about not being able to find anything for a snack. A few minutes later, Chef's respite family pulled in and suddenly Chef was racing around putting food into containers. "Am I staying til Monday?" he asked. "No, we talked about this. You'll be coming back Saturday night because you need Sunday to get yourself ready for Christmas. There's no more urine in your room? You took those out to the garbage?" "Ya, you even SAW me!!" And with that, Chef was away for the next few days.

On Saturday, I noticed a terrible smell coming from Chef's room - similar to the Thursday before, but stronger. When I opened the door, I immediately saw clothes and bedding rolled/bundled all together on Chef's bed. I started unbundling, gagged, rebundled, and looked at the time. The briefs were still there in the room. This time he'd bundled them inside clothing and bedding. Chef would soon be home and the bundle would wait til then.

As soon as Chef got home, he was ordered to remove the entire bundle from the house. There was much stomping and grumping but he took everything out to the garbage and disinfected his mattress. The next day was filled with hours of Chef grumping about having to empty out and clean his room - it took hours. By suppertime he just needed to finish disinfecting the walls, bedframe, etc. That was a week ago. The past week, Chef has been mostly polite and pleasant at other people's homes but the same certainly cannot be said for his time at home. In addition, I've been down the last few days with  terrible cold symptoms along with bacterial conjunctivitis. I guess I could look at it as things being worse because of it, but I figure if things are going to be rough through the holidays, being sick may as well happen then.

Today is December 30th. Today is the first day Chef has been pleasant at home since the 20th. He got up, exercised, bathed, combed his hair (!!!), etc., made lunch, did dishes, asked if I wanted anything, and is now resting in his room. I sure appreciate turn-around days.

A solid list of ideas for helping your child (and yourself!) through the holidays:

http://fasdthinktank.blogspot.ca/2012/12/holiday-strategies-for-fetal-alcohol.html

All the very best to you and yours,
Christine