Wednesday, November 24, 2010

What I'm Thankful For

It's Thanksgiving, and I've been working on this post since the beginning of the month. Not because Thanksgiving was coming up, but rather because I'd been thinking about the things that challenge him, versus all the other challenges that are common for autistic people. When I realized Thanksgiving was at the end of the month, I decided to take my time and make this a special Thanksgiving post.

Everyone has their own set of gifts and challenges, and these are some of Joseph's.

He might not be able to talk much yet, but I'm thankful that one of the few things he can say is, "I love you!" and you can tell he means it.

I'm thankful that my son is affectionate and loves to give us hugs and kisses.

I'm thankful that my son is ticklish and loves to be tickled.

He might be constantly trying to run away and escape to go exploring, but I'm thankful that my son can walk, run and climb. And so fast too.

He might frequently refuse to eat breakfast, lunch and dinner, but I'm thankful that my son does not have digestive problems.

I'm thankful that my son likes music and can sing Bob Marley songs with me.

He might have trouble paying attention to a lot of things, but I'm thankful that if nothing else, my son can be occupied by TV.

I'm thankful that my son has good taste in cartoons and likes Animaniacs.

It might be difficult to keep things away from him that he shouldn't get into, but I'm thankful that my son is smart enough and determined enough to figure out how to get around the obstacles we put in his way, because some day those will be obstacles to his happiness and success that he is overcoming.

I'm thankful that I have family nearby that can help with both of my kids so that I can take a break every once in a while so I'm better able to take care of them.

He might not be able to be in typical classes yet at school, but I'm thankful that we are in a great school district for special needs students, and my son has spectacular teachers that he loves.

He might not be able to tell me about them yet, but I'm glad my son seems to be developing friendships with his classmates at school, and that they seem happy to see him.

We might have financial problems, but I'm thankful that when my son needed to start the various therapies at Children's Hospital, he had Medicaid coverage so we could focus on what he needs and not how we would pay for it.

He might have trouble getting to sleep because he and is sister keep each other awake, but I'm thankful that once he's asleep my son is a sound sleeper.

I'm thankful that whatever my son chooses to do, he does with his whole self.

I'm thankful that my son got his mother's ears and not mine. :)

Tuesday, November 16, 2010

Bus Problems

Last week Joseph's bus aide gave me a paper with the school's rule about children needing to be "under control" in order to ride the bus. When I put Joseph on the bus, for some reason more often than not, he freaks out on me as soon s he realizes he's getting on the bus. I wasn't too worried about it because I knew that starting this week, his mother would be putting him on the bus and he cooperates with her and usually gets on cheerfully.

We're helping a friend, a single mother with a 7 year old son with autism. She just got a job after being unemployed for 6 months and she needed someone to watch Dominic for an hour and a half in the morning and then drive him to school. Joseph gets on the bus at 8:05, and so I would not have to get Dominic's coat on and take him out to Joseph's bus, Kristy moved her schedule so she goes in to work at 8:30 so she could put Joseph on the bus.

This morning, 10 minutes before it was time to meet the bus, Joseph saw the ironing board and pulled it out of the laundry side of the basement. When I took it away, he went into total meltdown, scratching and biting when I picked him up. We even gave him a little cake and he tried to throw it at us. Kristy took him out to the bus and they refused to take him. I don't entirely blame them, but this morning it is disastrously inconvenient.

Our car is a 4 door sedan, a late 90's model Escort. We can't fit Joseph, Maria AND Dominic in the car because they all need booster seats. We can't leave them home alone, of course. So that means I had to stay home and Kristy had to take Joseph to school, which takes 12-15 minutes each way (and I'm not sure they won't make her wait when she arrives to drop him off). Which means there is pretty much no way she can make it to work by 8:30. And at work she is on a Final Warning for tardies (left over from when she was "fired" during the summer). Which means that if she's late, she loses her job. If she calls off, she doesn't get fired, but she doesn't get paid for today either. It's a ridiculous policy that encourages absenteeism over tardiness. Because of various payroll cock-ups over the last few weeks, we're way behind on bills this month and money saved for rent. So this is exacerbating the situation.

We need to get a mini-van, these problems have been coming up more often, but I don't think we can afford to buy one until we get our tax refund next year.

Tuesday, November 9, 2010

Children's Hospital Intake Assessment

We finally got in to talk to someone at Children's Hospital's Autism Center. It was a short meeting, we scheduled the proper assessments for December. She also gave us a big book about Intensive Behavior Intervention (a style of or evolved from ABA?) and said that they encourage parents to get their kids into "center-based programs" (autism schools) as early as possible. We're hesitant about this. As I've said many times before, we love Joseph's school and his teachers are awesome and he loves them, and he's making so much progress there. But what if he could be making better progress in an autism school?

Kristy feels the same way, that she likes where he is and doesn't want to move him. I suspect that our judgement is based on emotional attachment though, and that's not necessarily the way we should be approaching it. What I really want is for Joseph to be in school like he is now for half the day, then spend the other half doing this IBI therapy. I don't think I have the patience, or more importantly the energy, to do the IBI with him myself for the 20-30 hours a week that would be necessary.

A friend of ours also let us know about a scholarship for St. Andrew's, where her 6 year old goes. She said she was told that so few people apply for it that sometimes it goes unclaimed and she suggested that Maria might do well there. We're hesitant about that either.

I think I just hate change, and we're just finally getting used to how everything has been since September, and now we're talking about changing the schools the kids are going to and it's making me very anxious. I feel like taking them out of the schools they're in now would be a criticism of the wonderful people who have been helping both of them. I feel like we're getting conflicting advice, his teacher at school says ABA is limiting and only reliably produces the same results in the same setting, the psychologist at Children's says a classroom curriculum not designed for autism specifically is not optimal and will produce slower progress at this early stage. Plus Kristy has misgivings about the use of "isolation" at Haugland, which is at the top of our list because of proximity to home, but we haven't talked to them about it to have them explain what it is and how they use it.

I think the best plan of action at this point is to continue to research our options and wait until the actual assessment is complete. I've been feeling a lot closer to God in the last few weeks since Maria and I have been going to Mass almost every morning, and I feel like he's listening to my prayers. So I'll ask him his opinion too. :)

Thursday, November 4, 2010

My son doesn't have a disability, he just has extra challenges.

(2010-10-21) Joseph's Class Field Trip - 0050

There's nothing that Joseph is not able to do, it's just harder for him to do some things than it is for typical kids. But there are things that he is better at than typical kids.

Autism is about excesses and deficits. Everyone has them, people with autism just have them to the nth degree. Some deficits cause more problems than others, the difficulty he's having learning to talk would be the most obvious example. But he has already shown us that he has an exceptional (or excessive) aptitude for solving problems.

I used to think that saying someone was "differently-abled" or "x-challenged" was a bunch of politically correct rubbish. It still sounds treacly-sweet to me, but now I understand it better and have more respect for that way of looking at it. This is yet another way that having an autistic son has forced me to become a better person.

I've heard it put many ways, but I think the simplest is this: My son is different, not less. (I think I'm paraphrasing one of my many friends on Twitter.) The cynical voice in my head says that this is just a coping mechanism, but the rest of me tells that voice to STFU. ;)