Tuesday, February 28, 2012

Better Late than Never

It is still February so I feel justified posting this.  Daniel made this at school in ELF one day.  ELF is an acronym for a social friend group that he participates in every other week.  He brought the card home and was SO genuinely excited about it.  I can see why.  It is about the cutest thing I've ever seen. 

If case you were wondering the blue lines are glittery and Daniel said it is "flashing"

The inside reads, "Dear Mom and Dad, I love you in London, I Love you in Rome, Look in your mailbox when you get home. xoxox Your secret admirer

It also says Be My Valentine.

Anyone know what that poem is from?? Because it is of course "from" something and not original. 

One of his favorites.  Arthur's Valentine

I think it is about the best Valentine I have ever received.  

Saturday, February 25, 2012

Last night was the preliminary round of the district swim meet.  I was gearing up for a long night, as we were told to be there at 4:00, it started at 6:00 and was expected to go until about 9:30.  I am usually an extreme rule follower, but I knew immediately I wasn't bringing him at 4:00.  Daniel had a little bit different idea and was ready at about 4:10 and waiting in the car, so my 4:30 plan was out the window.  When he's ready, he's ready.  I can't tell you how many times I've wondered where he is when we were leaving somewhere only to find him sitting in the car wondering what is taking us so long!

When Daniel and I walked through the door of the natatorium Daniel stopped and said "there's a LOT of people in here", which I had been warning him about.  There were 8 entire swim teams, coaches, timers etc.  Everyone wasn't even there yet and there was no spectators yet, since it was ya know, 4:30. I will admit it.  I was nervous.  I wasn't sure we would make it through this night and I was struggling because I know that no matter how upset he is, he won't leave somewhere if it isn't over.  Even if he is so angry, self injuring, freaking out, he is dug in even more.  Let's just say my gut was speaking to me and I had a bad feeling before we got there.  I looked at the line up and saw besides the 50 free and 100 free, the coach put him in a relay.  I always struggle with relays because I feel like Daniel's slow swimming slows down the others on the relay, I have come to realize that mostly they just care about there personal time within the relay, because it isn't the super competitive group anyway, but this is the districts and I had a bad feeling.  So I asked the coach to scratch him and put in someone else, which he agreed to.  Daniel seemed fine with the fact that he only had two races instead of his usual 3. 

I brought his usual old I pod nano with his Fantasia music.  The boy loves "Toccata and fugue in D minor by Johann Sebastian Bach" (which is what he says when asked what he is listening to or loves, but this time, knowing it would run out of battery in that time brought his I pod touch.  I love the I pods, for a teenage boy to have an I pod in his ear looks like everyone else, he can listen to calming music and block out the chaos around him.  It is a perfect solution.  A team mate last night asked what he was listening to, and this was his answer....THAT is not the typical! :) 

The warm up was so chaotic I just decided not to have him get in.  We are talking 15 or 20 people per lane, my husband described it that it looked like the start of a triathlon.  Does Daniel REALLY need to warm up with his times? Um....no.  I was mentally checking off my list of things we are getting through and I skipped that, check.  No relay, check.  OK, moving on!

The meet starts.  I bought a program.  I'm a numbers girl and I kind of like to write down everyone's times. It gives me something to do for hours and I can see exactly how everyone is doing.  I remind myself of the baseball mom keeping stats, but whatever. I find it fun and relaxing. It's kind of weird, but it keeps me busy.

I found that Daniel really liked having the program next to him. It was a typed visual schedule, and he understood more about these times that we have been talking about. He could see peoples seed time (there best time coming in) and what they actually swam.  He could see then why people were excited when they obliterated their time, or upset when they didn't.  Some connections were being made. 

Then at the beginning of the 3rd event, boys were standing next to the starting blocks getting ready and it happened.  What is possibly the worst thing to happen for an autistic person?  What is the huge fear our kids walk around with?  A random, loud, interrupting moment that stops the flow of what is going on, makes loud noises and flashes?  Yup.  The fire alarm went off.  The buzzers start, they flash and we have to evacuate the building.  A stand PACKED full of fans. Eight teams of swimmers in speedos, swim caps, half with no shoes on.  All outside. 

Daniel was SO upset.  His usual cues, bright red face, worried eyes, pleading for it to stop.  Begging me to make it stop (oh how I wish I could make it stop my sweet!  I would turn it off and protect you, but I can't.  It is gut wrenching). And from my perspective I have to put on my cheer leading face that it is all good, it will stop soon.  The coach distributed kick boards for all of the shoeless kids outside to stand on, Daniel had on slides, thankfully, but a short sleeved shirt and a swimsuit.  This not warming up was looking good because he was DRY.  What made me keep him out of that warm up? He's never done that before?  I was now thankful.  Although he wasn't complaining about being cold.  He wanted that fire alarm to stop.  The other kids were jumping up and down and freezing and laughing about the insanity of the situation and Daniel just. wanted. it. to. stop.  Go back to what we should doing.  He kept pleading for the kids to get back in the pool. "I just want them to swim"  "I want to swim".  "Make it stop so we can get back in the pool."  There is not greater feeling of defeat as a parent of a kid with autism when you can't control the situation.  It is totally out of your hands and you are in 100% damage control. 

The buzzers stop, but the lights were still flashing and we filed inside.  It started again.  "OH NO!" Daniel starts perseverating again.  He says "I'M GOING TO GRAB YOU AND GET IN YOUR FACE". To which I respond that he is NOT.  This has actually been a good strategy, because he is on the brink of doing it and warning me he is almost there.  I can sometimes stop it.  He did once.  He doesn't hurt me and it doesn't even really scare me, he pulls me toward him and touches our faces together in a super intense feeling that he may hit you, but he doesn't.  It may look like it to the casual observer. But I know he is begging for control and to lash out, but isn't.  I could go on and on, but let's cut to the chase. They finally let us in the building. The alarm was not blaring or buzzing, but the lights were flashing.  Someone (who I hope gets found and in a LOT of trouble) obviously messed with a sprinkler head in the band room (the sprinklers were going off in there and I hope didn't cause too much damage).  It took just over one HOUR to fix it.  The law is you can't go into the pool while the lights are flashing.  They couldn't get it to stop because of the the damaged sprinkler head in the band room.  Seriously our worst nightmare.  Every so often Daniel would yell out for the flashing to stop.  He was still very upset. I could see the natives getting restless at one point and finally talked him into going to the bathroom and I found Todd to help him so he wouldn't freak in the bathroom with out me to help.  (This also gave me a small break of talking him down the whole time, my own self preservation strategy!)  So our extremely long meet now had an extra hour added on to it. 

When it stopped the relief on Daniel's face was instantaneous.  He was so excited for it to stop, he looked like he could run a marathon he had so much energy. He was revitalized.  His first race was only a few heats away.  His coach called him down and he jumped in off the block (still no diving) and swam hard.  He is so strong, if we could fix a few things he'd actually be somewhat competitive.  But he took 3 seconds off of his best ever time!  I was so proud and he was SO excited.  Everyone was so excited for him!  His next up was his 100 free and he took 3.5 seconds off of THAT.  It was awesome.  He was so excited.  As always he announced that he WON!  Which he doesn't literally win his heat, but he wins in so many other ways.  I was tearing up sitting there, thinking about him able to sit through an hour long fire alarm. People approached me saying how great he did and "was he even upset"?  I don't know how they can't see that, but obviously he is only making a scene that we can see. Todd was across the pool and heard him a few times yelling out, but our parental radar is hearing it and others aren't paying too much attention. His team mates knew he was upset but understood.  They were happy for him when it was over.  The fact that he regrouped from that and used his energy in a positive way is, frankly, better than a few of his team mates did.  One or two let it get to them. 

It was the longest night.  We got home at 11:00 pm after enduring huge stress.  Daniel got to bed at midnight after his normal routine.  Slept until 11:30 this morning and we are ready to go again.  He is the most amazing person I know.  Today are the finals and we are just going to be a part of the team and cheer them on.  We have dinner out with the team. Usually I'd be nervous about that.  But honestly, right now. I feel like we could do anything.  If we can get through that, we can get through anything.  I choose to see the positives.  I think most people learn the best lessons through the hardest circumstances and I think it is even more true with our kids with autism.  I refuse to react why me.  I actually can't even do it.  I am so happy with what happened last night, I'm looking forward to facing it again today.