This blog was initially set up as a means of communicating with my son's team. Since then, I've heard from other parents with similar stories. If you are living with challenges or journeying alongside someone who is, you are not alone. There are many of us. I'm a single adoptive Mom ( of a young man who lives with many abilities and many diagnoses. We have journeyed together through many challenges and a few adventures over the years as my son has tried to find space in this world that makes him feel more comfortable, an attempt made especially difficult when living with Attachment Disorder, PDD-NOS (Autism), Developmental Coordination Disorder, ADHD, prenatal substance exposure, etc. Some of the strongest elements used in this journey have been music, visual arts, therapeutic parenting, team-connection, boundary-setting, boundary-setting, boundary-setting, communication skills, community-building, continual lifeskills training, and elements of Theraplay. (Click here for some written resources.) On this journey, there is laughter and tears and growth and hope. The greatest of these is hope.

Friday, January 14, 2011

Well, we have had a wonderful week.

This past week, Chef has been getting dressed in a different change of clothes every day, including socks! He has been wearing his boots and other appropriate outerwear outside without issue. He is eating well (still working on getting him to drink a decent amount of fluids throughout the day), and has been very pleasant to be around. Chef seems happier all-around, and didn't even have any meltdowns over having to attend a recent medical appointment.

There have been only occasional and minor blips around chores - mostly last weekend, but that all changed an hour before a friend was coming over on Sunday.

Prior to Chef returning to school after the holidays, he'd had four days of washing/dressing each morning. That all changed his first day back - he went right back to attempting to wear the same clothes he'd worn the day before, and continued his attempt for 20 minutes in the morning. Then he opened the freezer to take out his lunch, then put his lunch back into the freezer and said he didn't have time to take it to school then took two lunches out when I insisted that he take his lunch with him and had very teary eyes when I reminded him that he only needed one lunch - ah, the scattered mind on a school morning. For the past week, however, Chef has gotten up and independently ready every morning for school, with the only verbal prompts being about wearing clean socks and that it's easier if they're in pairs. I've put out breakfast for Chef but to no avail due to "scatter" so hopefully that will see a change next week. Breakfast on school days has always been a bit of a challenge. Over the years, we've tried a "breakfast first" plan which usually resulted in an undressed Chef by the time the bus arrived, an "up earlier" plan which usually resulted in the extra time being filled with what Chef referred to as "games" rather than using the extra time to get ready, etc. With such a drastic change recently, however, I am hopeful that we can focus on breakfast being the final piece in a now otherwise successful school morning. Wow, it's really amazing to look back and think of how it used to be next to impossible for Chef to even want to leave the house, then for him to go to school on a regular basis, and all of what was in involved in his attempts to stay in his room - and then to see him this past week just getting up and ready for school and waiting outside for the bus fully dressed, lunch in hand, and without issue. This past week has been a true gem.

Thursday, January 6, 2011

January 6 continued

When Chef went to bed tonight, we talked more about what might help him feel less anxious. So tomorrow's plan is for me to ask his new worker to please make an appointment to meet with Chef at school so Chef knows when to expect him, and to talk again with Chef's sister and brother-in-law to see if he can come there for respite weekends. Chef's part is to make a list for his new worker of what would make him comfortable/uncomfortable regarding a new respite family.

And on that note, dreamland beckons.

Miracles and Mayhem

On January 4th, we had a blip when Chef got up. He couldn't/wouldn't do anything at all other than loud incessant whining - and then it came out. "I don't want to go anywhere! I don't want to go to (another city)! I just want to stay home!" When I asked him what he was talking about, he said that his aunt had mentioned over the holidays that maybe we'd all get together to go see a movie. I assured him that wasn't happening that day and there were no definite plans made about that at all. An hour later, Chef was dressed and ready to start his day and had what seemed to be a very enjoyable day. During that time, Chef talked a lot about how he was feeling about the possibility of having a new weekend respite home.

"I don't like being around people who smoke like the people at that other place."

"I hope they're not mean to me like those other people were."

"I hope they're not rich because if I break something it will cost a lot to replace it."

"I hope they're not like (Chef's present respite provider) cuz they just make me sit around and watch tv or play video games all the time and they don't have any books for me to read."

"I hope they're someone I know. Maybe they can be like (Chef's sister and brother-in-law) because it's quiet there and I know them already and they don't make a lot of noise or anything."

"I hope they're not rich because rich people have servants and I've read books about slaves and I know that's wrong."

Ah, a glimpse into how Chef's mind processes. We chatted for quite awhile about all of those concerns, and I reminded Chef of what would happen if and when a new respite home is found; I'd meet them, we'd talk, Chef would meet them, etc., and that it would all happen over a period of time. In hindsight, I should have been more specific about the "period of time" comment. Later that day, Chef asked if I knew when his new worker would be coming to the school to see him again. When I said I didn't know, he asked if I could find out because he doesn't like not knowing, and he didn't want to suddenly have to go to a new respite place. When I reminded him again of the process that would take place, Chef said, "So when (my worker) comes again it doesn't mean that I'll have to go with him to the new place?" "No, not at all. He's just coming to spend some time with you to get to know you."

Today, Chef got up and got dressed and all the good stuff that's been happening this week. Today is day number four in a row that Chef has gotten up and independently put on a clean outfit without issue plus eaten regular meals plus plus plus. The "independently put on a clean outfit without issue" thing is huge. Huge! We decided to use a gift certificate today that we received for a local restaurant.

When we came home after lunch, we spent some time looking for a house key that has mysteriously disappeared, then decided a nap would be a good plan. There are some germs floating around these days, and Chef took an extra day off at home after the holidays because he's been coughing and sniffling. I ended up nodding off in the living room and woke less than an hour later. A few minutes after I woke up, our neighbour came to the door and asked if I'd seen what was outside our back door - there were sheets tied together hanging from Chef's second-storey bedroom window. I went up to check and Chef was gone. His parka and boots as well as his shoes were all by the front door. This meant he was out in the snow in just his socks, pants, and a short-sleeved shirt.

To make a long story short, I found him at the local library. He explained that he thought he could hide there and no one would find him and then he wouldn't have to go to a new weekend respite home. I immediately notified the local police that I'd found him then we headed home.

When we got home, Chef warmed his feet, had a good cry and accepted a hug (and even hugged back!), then sat quietly sipping a mug of tea while I contacted all the folks who'd been out looking for him. When I asked him to tell me more about his plan, he said he thought he could just hide at the library and not have to go to a new respite home. I asked him what he thought would happen when the library closed. His eyes looked surprised then he looked down at the floor and said he hadn't thought of that. I explained that he could have fallen when he climbed up into the window frame and that he could have fallen while climbing down the sheets. I explained that sometimes people with autism have wandered off and been lost for a long time, and that he could have been hurt or died if it had been colder and he had been out longer. Then I asked him what would be happening before he would ever have to go to a new respite home, and he gave a good explanation of what he's been told but said that he forgot at the time and doesn't always remember stuff. I told him I understood that but that even if he didn't remember, he did know that tying sheets to his dresser wasn't a good plan and climbing out his window wasn't a good plan and being outside in winter without boots/jacket wasn't a good plan. "What should you have done when you were still feeling worried?" "Not done that, and I should've talked to you."

The next concern was what to do about sleeping tonight. We rent, so I can't just run down to the local hardware store then spend the evening wiring up an outside alarm system or installing security bars on the outside of Chef's window. On top of that, it's a second-storey window (I specifically sought out a 2-storey place because where we used to live was a one-storey bungalow and Chef had climbed out his bedroom window a few nights/early mornings to get candy at the local 7-11 during a time when he was being introduced to a new med). There isn't another room where Chef can sleep because he goes through belongings. He'd tied his bedding to his dresser frame (he'd previously destroyed the drawers but had been keeping school papers on the top of his dresser), so we've moved the dresser into the hallway for now in hopes that Chef won't try to climb out his window again during the night by tying his sheets (he only has one sheet and one blanket in his room tonight instead of two top sheets) to his computer desk or closet organizer or mattress coils (he previously stripped the mattress bare down to its coils but we've kept it in case we can figure out an "indestructible" mattress material that can be shaped over the coil frame).

It was interesting for myself today to realize that I didn't feel nervous or scared. It felt horrible to know my son was out in the snow in his socks and I wasn't convinced that his body's need for warmth would take priority in his mind over his desire for candy (which I thought at the time was his goal), and it bothered me that I wasn't sure where to start looking because Chef already knows that the local stores would call if he showed up there without an adult. But I knew that the local police had two cars out looking for Chef, and that a crew of other folks were out looking for him after I'd made only three other phonecalls - thankfully this happened on a weekday when a call to a couple of local places was able to reach a number of good-hearted folks! That type of support means the world to a single parent raising a child who lives with so many challenges. There are definitely benefits to living in a small town.

Monday, January 3, 2011

Starting the New Year

January 3, 2011

Chef got up yesterday morning, did exercises, dressed (had a bath the night before), used deodorant, brushed his teeth, ate a full brunch, did his chores quickly and appropriately, cleaned up his Christmas stuff that has been in the middle of the living room floor since he opened his gifts, participated in making supper, was very pleasant throughout the entire day and evening, made two school lunches for later in the week and put them into the freezer, put the kettle on for tea, ate supper, did dishes quickly and appropriately, and had a bath.

All independently.

The only time I provided any sort of prompt was regarding the Christmas stuff and when I told him to have a bath before putting on his pyjamas. Otherwise, Chef's day was completely independent and lovely and enjoyed by all. In the afternoon, we watched some "How Is It Made Videos" and in the evening we watched Wall-E while Chef read his atlas and I painted. What a wonderful day.

There have still been no tantrums throughout the holidays.

We've taken this holiday time to focus on Chef getting dressed every day. Of course, I am all for pyjama days, but Chef has not yet had success in consistent non-pyjama (or alternative-clothing days!) days throughout his life. I'm hoping that we are now seeing a shift.

Here's what we've been doing:

-Chef needs to be washed and appropriately dressed at mealtimes. If he chooses not to do so, he may have a vegetable/fruit/another item that does not require cooking. If he has does this for more than 2 days and if there are leftovers that he wants, he can have one item but only if he participated in preparing it. If he caused stress regarding the preparation of the item that is now leftovers (ie: on Christmas Day when the dishes from 4 days prior were still sitting on the counter and there were cooking items I needed that were still dirty from then), the leftovers are not available to Chef.
-There is no free time til responsibilities are taken care of. It's been a long haul, but Chef is now acknowledging the importance of free time, since it also encompasses things like time for a bath in the evening which makes mornings easier, etc.
-Chef's stuff that is left out for more than one day is either sent directly to the thrift shop or stored away by me after Chef has gone to bed
-There have been many days when Chef spends 5-6 hours per day not doing dishes. Before holidays, he was donating his entire evening to the "no washing dishes" cause. One day there were 14 dishes left to do from the day before. Four hours later they still weren't done. And Chef can be pretty creative when it comes to attempting to get out of doing chores. This has been tricky. What do you do when a child just doesn't do his chores and continues to not show any concern over not having free time and is more than happy to spend time in his mostly-empty-except-for-furniture bedroom? What's now evolved at our house is a routine of chore-breaks; 20 minutes of dishes, followed by an exercise break to get the body/mind going and provide a break from the dishes. Chef shows the length of endorphin-building break he requires by how productive he's been in his chore and the message(s) that he is giving in his behaviour/communication. (Exercise breaks also take place if Chef shows he needs them otherwise by whining or making faces at me or anything else that shows even a hint of "attitude"/inappropriate means of communication of dislike for having to do chores. Those are to take place outside since that type of communication is not welcome/acceptable in my home. This has sometimes been an adventure in and of itself, but average turn-around time is now in the 30 second to 2-3 minutes range, a far cry from the hours of outside whining/complaining/tantrumming/etc in the past.)
-If Chef's outerwear smells due to hygiene issues, it does not come in the house
-If Chef needs to go outside to take a break, there have been times when he will not dress appropriately for the weather then will stand outside and whine about the cold, especially if other folks are nearby. I will now gladly open the door and call out reminders to him about what would have worked better for him. If I see him opening the door to go outside without appropriate footwear, he hears a chorus along the lines of "Outside in winter without socks? Outside in winter without socks?" For whatever reason, this "works better" than reminders along the lines of "You need to put on socks." I figure Chef takes the latter as an unwanted directive from me when he isn't in good space, but the other gets through possible barriers because it's just a question.

So, holidays have been a very very fulltime job with what might be some successful outcomes.