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.