Sunday, March 18, 2012

Getting Ready-Step 1

It can be really difficult for couples with children that have a disability to get away on their own.  That holds true for us too.  But....we have been the priviledged recipients of a 5-day all-expense-paid trip, therefore, we must rise to the occasion!  This is no light task!  Luckily, we knew about the trip well in advance--6 months to be exact.  This is good because it gives me time to gather my thoughts, analyze my worries (I'm very analytical) and to get prepared.  So, as with all things, I started with making some notes.  I decided to create an IEP just for me.  I am not a huge fan of the IEP process, but it helps me get my thoughts in order and to give myself a timeline for getting it done.  It also allows me to break down the process into smaller pieces.  I need that.

First, I decided that one of the funniest, but most important things we can do for ourselves is to take care of as much in advance so that we can avoid using all of our cell phone roaming minutes.  The destination is out of the country, therefore, it is bound to be quite expensive to use the cell phone.  Therefore, it must be avoided if at all possible.  We will use Skype once daily to check up on things and avoid the cost of minute-by-minute updates.  Good first goal.  I don't think it's necessary to give a timeline--only to know that this is a goal.  It's all in good humor anyway.

Secondly, in order to remain sane, we need to choose WHO will be caring for our boys while we are away.  This is really a big one and something that needs to be decided quickly!  We haven't taken a trip alone in over 10 years, and things are a lot different when it comes to the day-to-day care of the boys.  This includes the showering process, which fortunately, we have been working on for some years.  I may have to write a blog just on showering--someday.  We are very lucky to know 2 lovely ladies that have spent a significant amount of time with the boys, so we decide that is a perfect match.  Now to implement the actual schedule for care.  I decided that we needed 2 practice sessions before the big departure for the trip.  We had a meeting with our caregivers and they agreed.  Our first practice session would be an overnight session while the 2 of us attended a wedding in town.  We would stay at a hotel close by, but still stay away.  The second practice session would actually be while we are at home.  The reason we chose this method is so that we could be present while they practiced the schedule and all of its details.  The first time away would give them time to see what small things needed more work or answers.  As you know, if you've read any of my other blogs, a consistent schedule is highly important for our boys.  We have spent years of energy implementing it, and the boys have spent years learning to trust it. 

Step 1 in the overall process--So, for the first weekend away, here is how I began the process of developing a schedule:
First, I typed up a quick list of the steps that I thought would be used.  I based these on items the boys already know and use on a daily basis.  I needed to add a few more picture symbols for a few things that were new, like "Bye Mom and Dad" and "Hello Carol and Amanda".  These are based on what I know about the things our boys need to know.  This can be different for each child.  The level of detail is also based on their "thresehold" or how much they can manage to take in ahead of time.  Also, what is motivating to them.  Here is a quick glance at what my list looks like:

  1. Wake up
  2. Toilet
  3. Breakfast
  4. Pills
  5. Get dressed
  6. Computer/tv
  7. Lunch
  8. Shower
  9. Get dressed
  10. Bye mom and dad
  11. Hello carol and Amanda
  12. Computer/tv
  13. Snack
  14. Trade
  15. Dinner
  16. Jammies on
  17. Tv/movie
  18. Weighted blanket time
  19. Fruit smoothie
  20. Pills
  21. Bed
  22. Wake up
  23. Toilet
  24. Breakfast
  25. Pills
  26. Get Dressed
  27. Computer/tv
  28. Hello Mom and Dad
  29. Bye Carol and Amanda
  30. Lunch
  31. Computer/tv
  32. Trade
  33. Set Table
  34. Dinner
  35. Shower
  36. Weighted blanket time
  37. Fruit Smoothie
  38. Pills
  39. Bed
 After I had the list, I gathered my supplies.  I always have a spare blank "All Done" sheet ready to go.  Here's what it looks like:

This sheet is legal sized and laminated with velcro strips (I use the scratchy part on the blanks) applied all the way across in a vertical pattern.  Hopefully, this photo demonstrates that clearly.

Next, I go through the picture symbols I already have in my library and start to fill them in where needed on the "All Done" method board.  It seems I will need to create a few new symbols in order to complete this schedule.  I go to my computer and I open my blank template in my software program called Boardmaker.  I have created this template so that I can simply "paste" the picture symbol into a defined square.  I use this sized square for almost all of my pic sims. 

After I paste my symbols into the squares I "save as" if I want to ever use this set of symbols again.  This also avoids saving over my blank template, which I use all the time for different reasons.  I probably would not save this one since it's pretty generic.  I print the page and here is what it would look like:

Next, I use 2 laminating sheets (I prefer the self adhesive type) and adhere one to the back of the sheet and one to the front.  Then, I cut out each square (I like to go a little bit outside of the line so that the lines are still visible but this is not necessary).  I turn over each square and adhere a velcro dot (I now use the soft side so it will stick to the scratchy side already on the "All Done" method).  Now I have all of the picture symbols I need to complete my schedule for this occasion.  Here is what the schedule will look like.  I need one for the day we depart, and I also need another one for the next day when we return.  Otherwise, the board becomes too crowded. 

Weekend Away Day 1                                                  Weekend Away Day 2

You may have noticed that some of the pictured items are not familiar to strangers "outside of the box", but that is intentional.  Every family has their words that describe something personal, like a "blankie", or certain toy.  We are no different.  You may have also noticed that I only showed a toilet once.  That is also intentional.  This is the only time of day (the morning) when the boys need a visual reminder to use the toilet.  It is not optional at this time of day for obvious reasons, but they are pretty good at self-regulating the rest of the time.  I do use the toilet symbol when we are practicing something new, especially when it's in a new location and they might not be familiar with the environment or where the bathroom is.  In this case, they certainly know.  Also, I have learned many things about our schedule over the years.  Some are difficult to even pinpoint.  As I was developing a schedule I learned that I only need  to use pic sims for things that are certain.  This schedule does not account for every minute of the day.  The boys only WANT to know what is certain.  I believe this is why they trust it so much.  So, if there was a time when they wanted to color or do a craft, I might leave that out because it's not certain or specific.  Also, I would not attempt to make a trip to the grocery store without including it (because it's a transition) because this is something they NEED to know ahead of time (I know this about my boys).  But, if it is something that they NEED to do, or they need to do it at a certain time of day in order to achieve a goal, then I would include it.  Hopefully, this makes sense.  The pictures that I've used give guidance and give specific items that they are familiar with (or sometimes not) and that they find comforting and certain.

Well, wish us luck!  I have faith that everything will go off without a hitch!  I plan to update this blog as we round' the corner to the second step and eventually off on our romantic get-away!  That's the goal after all!!!

The first overnight went really well.  We made it out the door and into the car without any provocation!  Yippee!!  The ladies knew exactly what to do and there were no issues (unless you count the difficulty with electronics as a problem).  We made sure to have them write down any questions they came across so that we could answer them when we returned.  Overall, there were no huge questions, and all was smooth sailing!  Cannot wait for trial #2!!