Monday, June 25, 2012

A Bicycle Built For Two

We are into week #2 of the longest summer ever, and I am not sure I will be in my right mind for much longer.  Our main problem thus far has been that my oldest daughter is so busy with her summer sports, and I have to drag Katie all over for them.  Who wants to go sit in the heat outside when home has air conditioning, a pool, and a cupboard full of snacks?  We have been struggling through it, making the most out of the situation, when we ran into another problem.  My oldest daughter is so tired from all of her sports, that she doesn't want to participate in our family outings.  She wants to sleep in all day (like a typical teenager), and this has been a source of discontent in the family.  A teen being crabby and being forced to spend time with her sisters makes for a lot of "disagreements", most of which are very vocal.  Katie does not like people fighting, anyone, for any reason.  Especially not her family, and especially not when her sisters are getting in trouble.  When she senses an argument, she will start crying, and pleading for everyone to calm down, and really carry on.  And once Katie gets going with the tears, there is no stopping her.  The best idea would be for everyone to stop the argument, but it is like throwing gas on a fire.  The fight continues, Katie continues, and the day is basically ruined.

After a hurricane like that happened yesterday, Katie told me in tears that she wanted to go for a bike ride.  Now, Katie has very poor control over her big muscles.  To sum it up, she has really bad balance and coordination.  Not a great combination for bike riding, right?  So, 2 years ago, my parents bought Katie a "half-bike" that  attaches right to the back of my bike.  She actually pedals, and has handle bars, but I steer (and do most of the leg work).  She absolutely loves her bike, and we have been out quite a few times this year already, mostly just around the block.  It is a nice way for her to get some exercise, and consistent exercise at that.  She can't loose interest half way through and give up!

Once we got home from our disastrous family outing, I promised her that we would go out on our bike.  She didn't want anyone else to tag along (and thankfully no one wanted to go).  So off we went, on a much longer route this time.  From the moment we left the house, she started talking my ear off, and then she started singing!  She sang, and sang and sang the whole entire 30 minute ride.  I have to admit that she was singing the "Over hill, over dale" song from the military (that was also sung by Disney characters), and she sang the SAME song the whole time.  She was as happy as she could be, laughing and singing.  I didn't have breath to spare, but she didn't miss a note.  When we got home, she said to me, "This was the best day ever!"  Are you kidding me?  She spent roughly an hour in a fit of hysteria, only to proclaim the day fantastic because of a bike ride.  I am not one to look a gift horse in the mouth, however, and will just try to remember the calming effects of a bike ride next time she gets herself upset over something.

As a parent of an autistic child, this is what every day is like. Ups, downs, sideways, never standing still, never knowing what the next moment might bring, the next hour, the next second.  Never relaxing when things are going well, because you have to anticipate the next downward spiral.  Always looking for a way out of the storm, but not the easy way out.  Because the easy way out might mean that you are caving in, and you can never cave to autism.  Autism will rule you if you cave.  Always remembering what seems to help, and trying it again the next time.  Sometimes it will work again, sometimes it won't.  Sometimes there are so many factors at play that nothing will help.  Because it is not just autism I am battling.  It's autism and sibling rivalry, hunger, exhaustion, over stimulation, boredom, fear, hormones, anxiety and pain.  And so many other things, sometimes things I am not even aware of.  Things that Katie can't describe, is not even aware of herself. 

I enjoy our little bike rides.  I enjoy the one on one time that I get with Katie.  I love hearing her talk and sing.  I love her being outside in nature, exercising, being a kid.  I love that she loves her "half-bike" and I love that my parents gave it to her.  I love that people in our neighborhood see us riding around town.  Not everyone knows us, but I can only imagine what they are thinking when they see a grown kid, who is almost as tall as me, riding on a bike attached to her mother.  I hope I get the chance to talk to them someday, because I love to educate people about autism and Katie.  I love that my in-laws live only a few blocks away and we can bike over there for a visit.  I love that our Adventures in Autism sometimes lands us on a bicycle built for two. 

Sunday, June 17, 2012

It's Going To Be A Long Summer

We are only a few days into summer vacation, and I am out of my mind already.  I know quite a few parents out there are of one mind in dreading the summer break, for many different reasons.  The kids get bored, they get whiny, all they want to do is lie around the house.  They are too hot, they don't want to wake up for anything, they miss their friends.  There is nothing to do, there is nothing to eat, no one is home to hang out with.  There is nothing on TV, they don't want to go outside, there are too many bugs.  Sound familiar?  Well, I am dealing with that, times 3, plus a good dose of Autism mixed in.  Shake it all up, and it is going to make for one loooong summer!

How does Autism affect summertime fun?  For one thing, Katie has a hard time entertaining herself.  If she goes to play outside, she only ends up walking back and forth talking to herself.  Unless there is someone else there to engage her, outside is not her thing.  We have a pool, which she loves to swim in, but I won't let her swim without a parent there, so if I want her outside, I basically have to be with her.  Rememer in the old days when we would go outside to play and be there all day?   Only coming inside for Kool Aid and dinner time and when the street lights came on?  That is not an option for Katie. 

A long time ago, Katie used to go to summer school.  She became "overqualified" for that, so I sent her to the local parks and recreation program.  She loved that, and went for several years.  Then she became too old for parks and rec.  Now what am I going to do with her?  I don't want her to sit around watching TV all summer.  I have a few play dates lined up, and at night we will be busy with sports,  but I am looking at a whole summer with her following me around, wanting to plan parties and talking my ear off and wanting to eat Doritos.  That is going to get old, fast.

So far, in the few short summer days that we have had, she has.....eaten a cupcake wrapper, dropped an entire roll of toilet paper in the toilet, cried at a birthday party, been covered in ketchup at a golf outing, rearranged her sisters make-up (not in a good way), decided to do all the laundry without me knowing, freaked out at a softball tournament, and un-invited her sisters to the family Tigers game.  I am hoping that she is not going to gain a bunch of weight this summer, because she has also been eating constantly.  She already planned at least 5 parties, told all her "pretend friends" that I am not fair to her, and still can't figure out how to not put her bathing suit on backwards. 

I know that we will get through this summer, just like we get through everything else.  I am just not sure what I will be like on the other side of August.  The best idea I can come up with is to plan a bunch of stuff, a bunch of outings and get togethers, parties and picnics.  We have a few books that we are going to read together, and plans to ride bikes and swim.  I just don't see me personally getting anything done this summer.  I won't be able to go to the movies with my girlfriends, or stroll through the art fairs or shop leisurely at the mall.   I guess this summer, I will have to put some effort into making our Adventures in Autism as exciting as I can.

Sunday, June 3, 2012

Leaving Her Behind

I know you haven't heard from me in awhile.  Every May, my husband and I take a little trip, a mini-vacation, to Las Vegas.  We go to celebrate our anniversary, to relax and reconnect.  We have gone almost every year that we have been married.  We usually go by ourselves, but we occasionally have family that will go as well.  That might sound extravagant to you, but it is vital, almost necessary, for the two of us.  My husband works very hard at his job, and so do I.  We work opposite shifts and opposite days.  Our "free time" is spent attending sporting events, church activities, and running our kids all over town.  We really don't have the opportunity to spend quality time with each other.  That is where Vegas comes in.  We decided to make it a point to get away, to escape from our crazy lives, if only for a few days.

When Katie was little, we used to try and sneak out the door when we were leaving for Vegas.  We would bring her over to my parents house (my parents always watch our kids when we go on vacation), and drop off the kids supplies, try to distract them, and ease outside.  More often than not, Katie would catch on, and be at the door crying as we pulled away.  Not the best way, or most relaxing way, to start a vacation.  I would spend the entire time worrying about her and how she was behaving, and how long she cried for.  Then one year, Katie spied our suitcases out and asked us where we were going.  I was so caught off guard that I told her Daddy and I were going to Vegas.  She asked me, "Who am I staying with?" and I told her grandma and grandpa.  She said, "OK" and never again gave us a hard time.  That was the biggest lesson I ever learned from Katie.  If you tell her the plan, she is more likely to accept it and go along with it.

Leaving behind any children when you are going on vacation is nerve racking.  There are so many things to consider, and to plan for.  So many things to pack, so many scenarios to run through.  When you have a child with a Autism, that list multiplies.  You have to think about their medicine, their feeding schedule, their sleep schedule, their eccentricities, their entertainment, their emotional well being, their propensity to flip out at a moments notice, and their attachment to you.  Fortunately my parents are willing to take it all on, along with my other two daughters, and make an adventure out of it.  But I still have to over plan and map it all out, have multiple discussions with them about the plans for while we are gone.  What seems like a normal, well-adjusted kid can turn into a nightmare when she is hungry or tired, or if her sisters are picking on her. 

I called my oldest daughter my first night on vacation, and she felt the need to tell me that Katie had not slept the night before.  I later found out that this was a huge exaggeration, as she had been up late, but did sleep.  Not knowing the truth, I myself had a minor meltdown, in Vegas, thinking that Katie was going to be overstimulated and a mess without any sleep.  I was envisioning major temper tantrums, chaos of all kinds, while I was on the other side of the country unable to do anything about it.  My husband calmed me down, and reassured me that my parents were not only capable of handling Katie, but they enjoyed doing it and that everyone would be fine.  I know this, I know this, I know this, but the rational mind and the emotional mother do not always walk hand in hand.  The next time I talked to my daughter, I informed her that I did not want her tattling on her sisters while I was gone, because I was unable to enjoy myself if I was worrying about them.  The bottom line is, my parents are loving, doting grandparents, are fully Katie qualified, and have been for years.  They have seen her at her worst, and they know how to get the best out of her as well.  Nothing is going to happen to her or her sisters while I am gone, that would not happen when we are home.

Leaving Katie is one of the hardest things that I do.  In my heart I want to put her in that bubble, to protect her, and keep her safe next to me.  I also want to protect others, or to not burden them, concerning all the difficulties and baggage that comes with caring for Katie.  But to be the best mom that I can, and to be the best wife that I can, I need to take some time out for me and my husband.  I also need to let Katie form some independence and learn how to manage without us.  It does get easier as she gets older, because I can see how much she enjoys her little vacation over her grandparents.  Grandparents let you eat a lot of ice cream, stay up past your bed time, and run around without your shoes on.  It is nice to let her go be spoiled, nice to nurture the bond she has with my parents.  I have to admit, however, when I go on vacation, I miss my Adventures in Autism.