Monday, May 14, 2012

Year in Review Part 6

So, now we know where we were before diagnosis up through the diagnosis, and the overwhelming grief that came with it. So, Lets just keep on trucking so we can get to happier times. :)
Cameron has his diagnosis, Casey is born, Cameron starts with his Occupational Therapist, he is introduced to PECS (more on that in a moment) and starts signing "more".  It is now around October 2011. UGH, another holiday already?
I was beginning to dread holidays. It threw everyone's schedules out of whack, especially Cameron's... plus he really didn't grasp the concept of any holiday... even Christmas. He hates candy, or wearing weird clothes. Plus, I was all sorts of freaked out that he would bolt into the street. I decided... NO! this is Casey's holiday too. Not that it really makes a big whoop to him at this age either, but it might be a big deal to him as he gets older. So, Casey went as a hot dog, and Cameron as a ninja. The costume wasn't too fussy for Cameron, so he was actually ok with it. I gave him some animal crackers and juice and off we went in our double stroller. Thank GOD we had the stroller, but trying to navigate up to someones doorway and then back out into the street was a little rough. Especially those that didn't have concrete leading up to the door and the driveway had some huge SUV taking up 90 percent of the drive. HAHA... yea, my house if kinda like that too though...

Hardly anyone was giving out candy in our neighborhood. In years past, it seemed like swarms of children from all over the city would invade. Our neighborhood is FILLED with children, but most were out with their own families either doing church "harvest festivals" or trick or treating themselves. Times have changed from the days when I was a kid. We didn't worry about pedophiles or getting run over by cars. My parents would let us out the door with pillowcases and we were given a "territory" to stay in, usually several blocks wide and several blocks long. We roamed the streets from dusk until well after dark when the last of the porch lights were turned off and no more candy was to be had. We knocked doors, the kids that were too old got onions or something unsavory in their bags, and if you stayed for a while and talked to the old lonely grandma like lady, she would usually whip out her "secret stash" of full sized candy bars. Those were the days... remember those times?? I can't be THAT old... 

For the few houses that were giving out candy, I caught myself saying something I hoped I wouldn't have to. Everyone tried to engage Cameron and they just oohed and ahhed at Casey. When they would try to engage Cameron, though, he would turn away, or groan, or fiddle with blankie.  "I am sorry. He isn't trying to be rude, he is non verbal and has Autism." He doesn't say "trick or treat", and I literally had one guy tell me that he wasn't going to give candy to my kid until he asked for it. We didn't do it for the candy, actually. The kids weren't gonna eat it. We just did it because we wanted photographic proof that we tried to give them a fun and normal childhood... I hope that makes sense... When I told that guy that he had autism, I then heard for what was probably the first time amongst several hundred times to come....... "but he looks so normal". How did he get diagnosed this young? SIGH. Yea, I probably would have said the same thing had my kid not been diagnosed and I KNEW what autism REALLY was at this point. He said... well, I GUESS I can make an EXCEPTION. Seriously. It kinda pissed me off with the tone in which he said it, so I told him, keep it. I think we will skip that house next year... I used this Halloween night to spread awareness amongst my neighbors, and to also let them know that if they EVER saw him wandering by himself, to HELP HIM. Remember his face and know that we are NEIGHBORS. It was tough on me, but good at the same time. We also used it as a sort of "therapy". He was introduced to several people in the neighborhood, and he DIDN'T flip out when they tried to make eye contact or talk to him.It was a start.

So, back to PECS... what is PECS... it stands for Picture Exchange Communication System. Basically, we used pictures of food... milk and juice specifically, to encourage a form of communication. I would give him milk, use sign language for "milk", show him a picture of milk, hand him the picture and say milk over and over, trying to get him to either look at the actual object, then the picture, or object and my hand, or object and my mouth. We were trying in some way to tell him that if he wanted milk, he could use ANY of those ways to tell us, instead of screaming. Things weren't "clicking", but I haven't given up YET. He still doesn't say or sign "milk", and only grabs the pictures off of the fridge to play with them and get them stuck underneath the fridge, then cry because he can't get to the picture card. This is HARD work, no doubt, but this is vital. No one else is going to invest in my child the way I do. I am Mom, hear me roar, right? Plus, the screaming can drive the most patient of people a little crazy.

Here's just some of the progress he DID make since diagnosis: He said MOOOOM, like when he was sick, he would say it, but no other time. I Can't even begin to tell you how heartwarming that is. Really. He still has only said it a few times, and he has to be so upset or hurt that the moment is bittersweet, but he SAYS IT , in the correct context! You would expect this of a "normal" kid if they didn't feel good, or got hurt too... but this, THIS made my month. Just hearing it once. He also figured out how to play his own tv shows from our recorded DVR. NO joke. Smart cookie. It wasn't random pushing of buttons either. He did it over and over, and there were several options and menus to go through.

He also mastered the fridge lock we had put on the doors in only a few days. He became obsessed with opening and closing any door he could. So, he would do that OVER and OVER, until finally, I ended up using clear packing tape and taping the door shut. It works great, until you are cooking dinner and you forget to tape the door shut after grabbing eggs or something and you see some grubby little kid fingers wrapped around the fridge handle. With this kid, and I think pretty much ALL kids, you gotta just think on the fly. :)

This month though, he had the hardest and longest meltdown he has ever had. It lasted at least 3 hours. He screamed himself hoarse. I TRIED to comfort him. He has his blankie, and that usually calms him. I tried deep pressure, which was something that his occupational therapist had suggested. I stroked his back gently, I gave him milk, cookies, juice, I checked to see if he was in pain. Nope. It was a miscommunication disaster. He wanted to tell me something but couldn't. I was crying, he was crying, the baby was crying, my husband was at work and I didn't know what else to do. I was still breastfeeding at that point, and the crying actually caused me to soak through the bra and shirt I had on. He wasn't running a fever, he had pooped a normal poop recently (moms, you get what I am saying!), he hadn't really eaten much of anything, but that wasn't unusual. He just woke up from a nice long nap, so he shouldn't be tired. My mom wouldn't answer her phone and I had ZERO help. I finally loaded him and the baby into the car and He was kicking and screaming as I strapped him into his car seat. I had to get another opinion, even if that meant taking them to either my husband's office, or to the ER, something.

We got into the car and I backed out of the driveway, got 1/2 a block from the house and QUIET. What? Seriously. QUIET. I heard sniffles and the last remnants of a cry session, but I gazed in my rear view mirror to see a child hugging his blankie and staring out the window. That's it. Seriously. I don't know if he just wanted out of the house, liked the motion of the car, or needed a change in environment. We drove around for about 30 minutes and I got back home, into the driveway and wondered... was it gonna start again? I was lucky that it didn't... good news is, I learned something new... when t gets that unbearable, a car ride seems to do the trick... every time. It still works to this day.