24. School Again!

Today was the first day of school.  Alarms went off at six this morning, which was the earliest I have gotten up since May.  The morning went well, zero incidences.  Tiny usually sleeps until at least 8:30a and the bus comes a little after 7:00a, which gives me a lot of time in the mornings.  Last year I went back to sleep, but this year I thought I should be more productive and use this time to my advantage, so I've decided to start exercising during this time.  I do hope to lose weight, but also just get in better shape.  It's nice to have a lot of energy to run after the kids and I do enjoy being active.  

Last school year I had a list on how to earn pebbles (our reward system) for having good mornings and this morning was a very good morning, so pebbles were given!  We had over fifteen minutes of free time before having to go wait for the bus, which doesn't always happen because J has so many difficult mornings.  This was a great way to start the year!

Yesterday was the first Open House, where we went to meet the teachers and sign up for the After School Program (ASP).  J wants to do Science Olympiad, which is on Tuesdays, and then he will go to ASP one afternoon a week to have fun, play with some of his friends.  J's teacher has experience in special education and when I introduced myself to her, she was fully aware of J and had already spoken to his teachers from last year.  Everything I said to her about J she wrote down in her notes so I felt she was really listening and paying attention.  I left with a good feeling ... and a huge stack of papers to fill out for the school year.

Then we went to see the gifted teachers.  We got more information on the things they are going to do this year, and we also left with more papers to fill out!  The coolest part of the gifted program this year is that the kids are going to make a Lego amusement park.  I don't know all the details, but I know Legos are a big deal in this house!  So anything with Legos will be awesome.

The scary part of school is that it's almost eight hours of not being with J, six and a half hours of school and two half-hour bus rides.  I don't feel the need to always be with him, but I get so many emails from teachers about incidences at school that I often feel lost as to how to respond.  I can talk to him when he gets home, but once something is after-the-fact, J doesn't want to talk about it or he won't talk about or he'll just say "I don't remember."  I can give teachers advice or encouragement, but if I'm not there to help, guide, or correct in the moment then there's often not much I can do from home.  I hate the feeling that my child is a burden on the teachers, but that's often the feeling I am left with.  Last year his homeroom teacher was really great and understanding, but this is one of the only times I have felt comfortable with J's teacher.  Usually I am left with "Please address J's behavior."  Right.  Thank you.  So I'm praying this year will be great!

To give the boys more responsibility, this year they are both going to make their own lunches.  J was a little nervous because he wasn't sure how he would know what to pack.  So I made an easy chart so everyone would know what to put in their lunch boxes and it's on the front of the fridge.  Both boys find making their lunch really exciting.  

I am hoping for a good school year.  I am still working out therapy schedules so that everything can fall easily into place and be on a very set schedule.  It's a work in progress, but I am remaining hopeful.  I'd like to have everything happen on the same days of the week, but we will just have to see how that works out.  Tiny will be in the 1's class at the church around the corner two days a week, so for six hours a week I will be childless while everyone is in school!  Hopefully I will be able to get some work done at the house and run errands more quickly since I won't have children to get in and out of the car and direct around stores.  It'll be very relaxing to just do my shopping with a baby yelling at the other customers (he's very friendly, but very loud!)

Gryffindor backpack again this year.  And a Star Wars t-shirt.  

We like for our fandoms to collide around here!

6. Pushing the Limit(less) Part II: Responsibilities

In my last post, I talked a bit about breaking my ankle and what that meant for J.  This post expands on that.  It was a terrible few months - and my terrible I mean there was anger, depression, sadness, loneliness, and pain.  Mostly physical pain, which I cannot even begin to describe.  

Stormtrooper has a job where he leaves the house around 6am and gets home anywhere from 6pm-8pm.  Five days a week.  So beyond working, he also had to do all the grocery shopping, cooking, and cleaning.  As I grew stronger, I could start to do a little more, but once I had the baby, healing was doubled because I had to have a c-section, so my body was healing from two surgeries in the span of a month.  Stormtrooper was stressed and overwhelmed, and the last thing he wanted to deal with was J having a tantrum over his shoelaces.  (Truthfully, the shoelaces are a huge point of contention because at nine years old, J cannot tie his shoes.)

So we started making J responsible for more chores around the house.  It was slow going and came with a mountain of tantrums and meltdowns.  

The first thing we taught him was how to start the water for his own shower, how to quickly adjust the cold/hot knobs to get the right temperature.  Before, he was able to wash himself, wash his hair, and dry off (mostly), but he hadn't ever done the water.  The first week or two, it would sometimes take him a solid five or ten minutes just to get the temperature right.  Now he can take a shower, in and out, in fifteen minutes - and that's including washing himself correctly, which was also a lesson we had to help teach him, and getting his pajamas on.

The first time he had to do the temperature himself, he cried.  He stomped his feet and screamed.  Because he couldn't get it right.  I was downstairs and still in a position where it was very difficult to get up and down the stairs on my own, so as to not risk my safety, I didn't go upstairs until Stormtrooper came home from work.  (Luckily, that only lasted about a few weeks and then I was able to move much more freely, albeit slowly and carefully.)  

That first night, J ran down the stairs, stark naked, with tears and snot covering his face, claiming the shower was broken because it was too hot.  We talked about turning the cold knob little by little until the water was warm.  A few minutes later, he ran down the stairs, stark naked still, with more tears and snot covering his face, claiming the shower was broken because now it was too cold.  And it went on like that until he finally got a temperature he could tolerate.

The next night was much the same.  So was the one after that, and the one after that.  Until finally, there wasn't any crying.

It was such a relief to no longer have tantrums about the showers.  I honestly cannot say how long I would have allowed his tantrums to continue if I hadn't been injured and had been in a place where I could physically intervene more easily.

After the shower was better solved, I began adding on more responsibility.  I taught J how to do his laundry, how to specifically clean his room or bathroom or parts of the kitchen.  I made chore cards that outlined, step-by-step, how to do every chore/responsibility.  I wrote and rewrote them, removing as many gray areas as I could without overcomplicating them.  Every step was a work-in-progress.  Sometimes we took a step back, sometimes we took two steps forward, but eventually we found an even plane where responsibilities were routine enough for him to follow.

Without the very specific outlines, J seems to be unable to complete certain tasks.  He is not an auditory learner; he absorbs information visually.  So we either hand him his chore cards, or place them on his bulletin board, which also has a white board for messages.

Iron Man also has an identical board and also uses the chore cards.  Sometimes he needs them just as much as J does!  I think a lot of that is just being a little kid, of course, but it also allows us to show them exactly what is expected of them when they do certain tasks, like clean their rooms.  

Next to the white boards is our daily schedule, which outlines the day.  We have several cards, most of which don't have times because putting times on things leads to a lot of stress.  For example, I have 6a alarm, because that is when he wakes up in the morning, but if I placed specific times on when to do homework and chores, it would not allow for deviation.  J does not do well with switching or changing his schedule, which is fairly typical of ASD.  If I gave him 30 minutes for his homework, then after 30 minutes he would stop and go on to his chores; he would not finish his work.  He can be very, very literal.  The schedule is more of a fluid guide, and it works well.

To someone who does not have a child like J may think that the cards seem overly strict, but that was never the point.  Perfection was never once the point.  The point was to have a visual aid to fully explain how to do things, how to do chores and simple things around the house.  The point was to help eliminate tantrums and meltdowns.  J's books on his bookshelf don't have to be in any sort of order, but when the books are stacked on top of each other or with the titles not showing, then J just leaves them there and won't read.  When he knows what books are in his room, he will read for hours, book by book, or chapter by chapter.  To tell someone like him, "Clean your room," he would have no idea exactly what that meant.  

Before, he would move things around, pile things on top of each other, clear the floor, but every other inch of the house would still be an absolute mess.  The best example of this was before I labeled his dresser drawers, he would mix his clothes.  Even though we decided shirts would be in the top drawer, I would find shirts in all four drawers.  Once I labeled them, shirts never found their way out of the top drawer.

J thrives best on routine and consistency, and that's how I treat the chores.  They are a list, step-by-step, and he is able to do them well because they are routine to him.

The schedule is not necessarily strict either, but is an outline for our day.  Before the schedule, he would often ask, "What can I do now?" and not always like the answer.  Now he is so used to the outline that he doesn't always pay attention to it, because it doesn't change too much, but the days he has therapy or his ASD club or we are going to run errands, like go to the grocery store, I put it on there, and he sees it, and becomes fully accepting of it.  Before, he might balk or fight against doing something he didn't want to do.  He still doesn't like going grocery shopping, but if he is expecting it, then he is able to mentally prepare for it, and thus, will go willingly without a tantrum.

A lot of the things he does around the house came about because of my fall and having the baby and needing him to be just a bit more self-sufficient.  A lot of what came afterwards was figuring out exactly what he was capable of and allowing him to actually be capable.  Which may sound odd, but I've met a lot of parents who don't have their children do anything - whether or not their kids have special needs.  When J does something well and I praise him, his body language changes.  He has a very difficult time expressing emotion, but I've learned to read him, and he loves praise.  There are still things he has a lot of difficulty doing, so for those things, I will help him with each step, or guide him so that he will hopefully learn.

That time period was a great learning experience for both of us.  I learned just how capable J was and I learned how to help push him to do more things on his own, but also learned to really read the signs for when he reached his limit.  Before my fall, I worked full-time, and I didn't have the time or the energy to devote to something like this.  I certainly do not fault any parents who do not have their kids do things like laundry or cleaning their own bathrooms; I certainly did not have the patience to deal with that before I stopped working.  But now I see his growth and responsibility and it does nothing but help secure my hopes that one day he will be able to be self-sufficient enough to move out and live on his own, happy and healthy.

5. Pushing the Limit(less) Part 1: The Most Important Person

I am a SAHM.  Two or three nights a week I moonlight at a coffee shop, but during the days I stay home and take care of my kids and my house.  I do all the grocery shopping and errand-running.  Take the kids for haircuts and doctors appointments.  I pick up all the refills of medications from the pharmacy.  Do all the budgeting.  Help facilitate the homework.  But that's my job so I don't mind it.  In fact, I love it.  I never thought I would, but here I am.  I'm lucky I can stay home as much as I do, lucky that my husband works as hard as he does to allow me to do so.

Of all the things I do as a SAHM, most of them seemed geared towards J.  It's so easy to slip into a pattern where he becomes the central focus of the house, but that's not realistic.  We have four other members who are just as important as he is.  Him being on the spectrum does not magically make him more important than anyone else here.  What it does do is make it more difficult for me to express how equal everyone is, and that is a challenge I work on daily.  In fact, it is probably one of my greatest weaknesses (but don't tell my husband that, I still like to maintain that I am without fault).

As someone who has ASD, J doesn't always seem to realize that he isn't the center of the world.  His actions and words can be very selfish, and when you try to point it out, he doesn't see it - or he doesn't understand.  Selfish is a word beyond his comprehension.  When he has a tantrum or meltdown, when he says "no" to a simple request because he doesn't want to do it or he doesn't want to do it on our timeline, it becomes quite plain that he is in his own world.  He is very much in his own world most of the time, where he walks around in circles or talks to himself, flails his arms and laughs.  As my husband says, "It's all puppies and rainbows in that boy's head."  Yes.  Yes, it is.  And it's hard to get him out of that world and back into this world.  It's hard to get him to separate himself from J-Land and back into Family Land.  It's probably more fun in his world, where he gets to make all the rules and be the most important person.  But in our world, he's still only one member of five.

Being the center of a familial universe is fluid.  On my birthday I'm the most important person.  While the big boys are away, Tiny is the most important.  When Tiny is napping and I am helping J with his homework, he becomes the focus.  It shifts and moves, but when you have a child with special needs, it's very easy to get lost in that child and allow everyone and everything else to fade into the background.

Do not let the rest of your family become background.

It's something that happens to me from time to time.  I get so caught up in trying to help J that my brain turns off to the others in my house.  I have to actively remind myself to spread my focus to everyone the best I can.  Not only do I want to make sure that my kids know I love them equally and my husband that I love him profoundly, but I do not want to give my son the false sense that he is the most important person.  When he goes out into the real world, when he gets a job or goes to college, he will have to realize that not everything can revolve around him.  If he goes out into the real world.  We hope we will be able to; that is our ultimate goal for him.

In April 2012 we got the diagnosis of ASD.  In May 2012 we found out we were going to have a baby.  In November 2012 we closed on a new house.  On November 18 we moved from our apartment in the city to the new house in the country.  A new baby and a new house and packing everything up to move is a lot to handle, a lot of change.  It was a lot for J to take in and deal with.  He did remarkably well with all the impending change.

On November 23, 2012 our world changed again and quite suddenly.  I was eight months pregnant, school was out for Thanksgiving break, and I fell while walking down the stairs.  We had only been in the house for five days and I demolished my ankle.    Let's take a moment for me to reiterate the severity of what happened.

My ankle broke in three places, called a trimalleolar fracture.  Those are two pieces that were completely broken off from the rest of my ankle. 

And here is the ankle reset, but not even close to being healed.

Ten days after I fell, I had surgery to add in screws and plates so my ankle could heal. 

Man, that is really nasty-looking.  

So now that we've officially established that this was a bad injury, let's delve a little further into what this meant for my ASD kid.  We had a routine established in the mornings when we lived in the apartment.  I would go into his room and wake him up.  I would make breakfast while he got dressed and ready for school.  Then when it was time, we would go to the bus stop and wait.  But once I broke my ankle, I was unable to walk.  I had crutches, a walker, and a wheelchair because I was not allowed to put any weight on my foot whatsoever.  Moving around was so difficult that for the first several weeks I could not go to wake J up in the mornings.  I had trouble getting down the stairs on my own since I could not walk, so I could not make him breakfast or pack his lunch.  I could not wait with him for the bus.

Suddenly he was thrown into a world where not only was he no longer the center of my attention, but he also had to be responsible for so much on his own.  

My husband would leave out cereal, bowls, and spoons out on the table if he had to leave before it was time to get up for school.  He packed the lunches everyday.  He was a godsend.  J's grandmother gave him an alarm clock and he had to turn it off in the mornings, get dressed, and go downstairs.  He had to wait for the bus on his own because I could not walk down the driveway with him to the bus stop.  Luckily I could see him from the front porch!  

Family and friends shifted their focus to me, to my healing, to helping me get to doctors appointments and physical therapy.  The focus that had usually been on him was no longer there. 

Four weeks after I had my ankle surgery, the new baby was born:  Tiny!  So now our house was dealing with a broken mama and a newborn.  If there was ever an equation for ensuring no one else is the center of attention, it's a brand-new baby and a temporarily handicapped mother.

I believe this period of time was very important in J's growth as a kid with ASD.  He had to learn many new responsibilities and coping mechanisms.  He had to learn to share, to wait, to listen.  I was unable to take him to therapy, so we had to work-through every tantrum and meltdown on our own, we had no expert to turn to for advice.  

Mostly he learned that he is not the center of the universe.  Now, does he still remember that now?  No, not necessarily, but he does seem to have a very realistic understanding that the needs of a baby sometimes take precedence of the needs of a nine-year-old.

Between my husband and my BFF, they'll both beat me to death with the silver lining stick, which after so many years has conditioned me to start thinking about the good things that happen in the midst of something bad.  There were a lot of things that I learned from the time I spent broken. 

• I learned that J was capable of way more than I ever gave him credit for.
• I learned that J is more kindhearted than I realized.
• I learned that I am very easily stressed and have to actively work at remaining clam and collected. 
• I learned that if my husband and I could survive three months of me not walking and a brand new baby at the same time that we probably can survive anything. *phew*

Once I was healed, I was able to more easily stretch my focus to each member of my family, something I had truly missed without even realizing it.  

I had set this post aside to reread later and edit before posting.  I had wanted to post it this morning, but J had a huge tantrum/meltdown.  He has trouble finishing his homework, so one of his teachers gives me next week's work on Fridays so we can work on it over the weekend.  He didn't want to do it so he began to lose it.  There are still times where he doesn't understand that the world does not care what he wants, the world will continue to revolve whether or not he gets his way.  Clearly this is still a struggle for him, but it is definitely better than it was at this time last year.  It reminded me that he is not perfect, nor will he ever be.  It reminded me that there are still times where I have to shift my focus from everyone else and focus on him.  It reminded me that the road ahead is still going to be long and difficult.  But when he had calmed down from his tantrum and sat down to do his homework, it reminded me that even though we hit road blocks, we can move around them to find a clear path ahead.  How long will it stay clear?  Not long, but the older he gets, the clearer it stays.