Hello world!

I signed up for this blog almost a year ago.  Now it’s almost midnight on Christmas Eve and I am just getting around to writing my first post.  It seems like an odd time to finally get around to writing something, but I was just thinking about how different this December has been, compared to previous years.

Just for a quick into…  My name is Jennifer, I have two kids.  My daughter is 7 and my son is 5.5 years old.  I’m a nurse, I work part-time at night.

I mentioned above that it is Christmas Eve.  We had a fairly busy day today.  I worked last night, slept for a few hours, ran a couple of errands, and then brought the kids home.  I always push things off to the last minute and today was no exception so I spent the afternoon rushing to prepare food before leaving for church.  We went to the children’s service this evening.  Just the fact that the kids and I are going to church as a family is an improvement over last year!  I wasn’t sure what to expect tonight.  Mark was very vocal in telling me that he did NOT want to go to church.  We went anyway.  When we got to church there was nowhere to park!  There were cars lined up down the road.  uh-oh.  We parked very far away and by the time we walked all the way to church we were late.  We couldn’t even get into the church, we had to squeeze into the foyer with all the other people who were late.  It was standing room only.  I anticipated that we might be leaving only minutes after arriving.  Surprisingly, things went ok.  Mark went off by himself into a back room and sat down for a lot of the time.  Kaiya sat on the floor drawing in her notebook.  I managed to position myself between both of them so I could watch them both.  I found that Mark did better when left alone, however you can never take your eyes off of him because he’s not always predictable.  At one point he squeezed his way into the church.  I could not, because I’m too big.  I strained to watch him as he walked further and further up the center aisle.  I was hoping that he would stop but he didn’t.  I finally asked all the people in front of me to let me through so I could go after him.  I caught up with Mark who was on his way to look at the manger- which was on the altar.  I managed to redirect him into the 2nd pew from the front, and I convinced him to kneel and fold his hands.  There was no room  for me so I was still in the aisle.  Communion was immediately after and he went nicely with me.  Then, on our way back to the pew he spotted his speech therapist from school and attempted to barge right through everyone to go say hello.  Somehow I got him to wait off to the side until she came back from communion and then he said hello to her.  Many people left after communion, so we were able to sit for the rest of Mass.  By this point Mark had enough and was bouncing/pacing in the pew and the aisle.  But we left at the end of the service with no incident….  Success!

I’m sure that many parents of typical kids wouldn’t have called today success.  But it was for us.  The crowd today was a nightmare situation for Mark.  Sure- some people might have been horrified that their 5 year old tried go on the altar during the service to look at a manger.  But I focused on what he didn’t do.  No yelling, crying, hitting, tantrums etc.  He doesn’t realize that he was doing something that he shouldn’t have been.  There were several parents of toddlers in church today.  Many parents had to follow their toddlers around, always trying to be one step ahead.  Mark can be similar.

After church we went to a family Christmas party.  Usually these parties are stressful for a few reasons.  One is that I didn’t share the kids’ autism spectrum diagnosis with everyone at first.  It became stressful wondering if the kids were passing as “normal.”  (I hate that word).  In the past the kids also got into trouble- getting into many things that they shouldn’t, making a mess with food, being inappropriate, hyper, etc.  And inevitably Mark would have some sort of tantrum which would leave everyone wondering what was going on with him, and why couldn’t I stop it.  (aka- that kid needs a good smack…)  I could never have a conversation with anyone, sit and eat, or do much of anything other than chase around the kids.

This year was very different.  First of all- the diagnosis was posted on Facebook back in February, so there was nothing to hide.  Second of all- the kids didn’t keep getting into things that they shouldn’t!  Mark didn’t make a mess with his food either!  No one had a tantrum when they couldn’t have any of the foods containing gluten or milk.  I was able to sit and eat, and chat with family without catastrophe.  The other thing is that it seems to be more obvious now that Mark has autism.  Even when he is behaving and not having any major issues, he’s not acting like a typical kid his age does.  It’s more clear now that he’s a kid with autism… not a typical kid acting like a brat due to his parent.  We had a very enjoyable time.  Towards the end- Mark misunderstood a situation.  Some family members were laughing and he became upset because he interpreted it like they were laughing at him.  After that he refused to respond to them other than to make scary faces.  I quickly packed us up to leave.  I could tell that he was on the edge of losing it.  Everyone seemed to understand though and we left without any problem.  So overall it was a very very nice day today!

I was thinking about all of this because December is usually an awful month for us.  The kids destroy the Christmas decorations.  They don’t play with their toys.  They get so hyper.  Every time I try to do special stuff with them someone has a meltdown and we have to leave.  Parties usually end in disaster.  I usually can’t wait for it to be over.  I usually feel robbed at this time of year.  This is supposed to be one of the best things about having young kids!  Presents, Christmas, seeing their enjoyment, etc.  Not having them crying about things that all the other kids think are fun.

Three years ago our Christmas was especially bad.  Prior to that I still thought “this too shall pass.”  I was oblivious to the fact that my children weren’t just typical- spirited kids.  But in 2007 I knew that something wasn’t right.  My birthday is a week before Christmas.  My parents used to take my out to eat every year.  That year they decided that we could not go out to eat with my kids because they couldn’t sit and eat in a restaurant.  We ordered Chinese to eat at my house instead.  It was a disaster.  Mark was 2.5 and Kaiya was 4.  I didn’t get to sit and eat.  Couldn’t talk to my parents at all.  Mark had one tantrum after another.  Made an absolute disaster throwing his food everywhere and mashing it up.  After they left he got into the fridge and smashed several eggs into the carpet and was quietly playing with them.  When I took him away he had a massive fit.  Friends had been telling me for a year at that point to call birth-3.  They pointed out that something was not right.  Autism had even been mentioned which I completely disregarded because he liked to be held as a baby.  And babies with autism hate being held.  Anyway, on that birthday in 2007 I finally realized that there was something.  I called birth-3 right after that.  I thought he had a sensory issue and went to the library to get a book about it.  I couldn’t find the book but there was a book about High Functioning Autism/Asperger’s there instead.  I decided to check it out, mainly to know how to respond if anyone mentioned autism again because I didn’t know much about it other than the fact that Mark didn’t have it.  I pretty much knew by the end of the first chapter of that book.  Right at Christmastime.  It was a horrible year.

Back in 2007 I bought Mark a helicopter for Christmas.  I was so excited about it.  I couldn’t wait to see him play with it.  He was not interested.  He didn’t play with it at all.  He played with the string/hook that hung off of it.  That was it.  It was as if there was no helicopter.  I could have just given him a sting with a hook on it and he would have been happy.  I tried and tried to get him to play with it with me and he wasn’t interested….

The following years Christmas was also rough.  School vacation comes at Christmas.  Together with behavioral issues, changes to routine, stress, etc- it was a nightmare.  Last year Mark wasn’t doing well and we were also losing our in home ABA services….  I had this sinking feeling that this was going to be our life forever.  We would never enjoy a holiday season or do the typical things that I had wanted to do with the kids.  Christmas for us would always be something that I can’t wait to end…..

This year so much is different.  For one, I’m happy about the school vacation.  That alone is a huge plus.  I have tons of decorations up in the house- glass!!!  If you knew Mark before you would know why this is a big deal.  Mark is impulsive.  Mark has a temper.  When Mark gets mad he throws the first thing he sees.  If it’s glass and breakable- he’ll definitely break it.  But not this year.  He didn’t throw or break a SINGLE thing.  We went out to eat, went to Bright Nights, a Christmas Concert at the highschool, church, a family party…  We were almost- typical….  Not that either of the kids acted really typical.  Especially Mark.  But without the extreme behaviors it seemed like nothing else matters!  I can say that this has been a really nice Christmas season.  I’m in no hurry for it to end.  Soooo much can change.  I didn’t think that our little family would get to this point.  I really thought that we were doomed to disaster….  I don’t know what will happen next year, or tomorrow morning.  But right now I’m really proud of my kids and thankful to get to spend the holiday with them! 🙂

Merry Christmas!