Saturday, July 21, 2007

It's here! It's here!

Harry Potter and the Deathly Hallows is here! Woo-hoo!

I ran downtown and got one of the last copies available for the midnight madness. Very exciting. But I haven't gotten a chance to crack it open yet- working today. So here are ten things I hope are in this book:

1. I want a real nagini to come kick Nagini's butt. I know it won't happen. But I can dream. I still fume that Nagini is not a cobra.
2. I want Snape to turn out to be a complicated good guy. He's such a delicious character, I'll be really disappointed if she flattens him out and makes him evil.
3. More centaurs, giants, and house-elfs. I want to see the magical world filled with more than just us, and have them have their own struggles with good and evil.
4. I want Ron, Hermione, and Harry to live.
5. I want to know more about the curse that killed Dumbledore's hand. Was he turning into something really bad? Or was it just killing him?
6. I want Molly Weasley to go medieval on somebody's butt. She must be a pretty powerful witch, but we haven't really seen any of it. Ditto for McGonagal.
7. I want to know what Dudley was sweating bullets about when he was attacked by the dementor. What was his worst memory?
8. I want lots and lots more about Lily Potter, and when James learns not to be a little twit.
9. I want to know what happened to Ollivander.
10. I'd like more about Slughorn and the Slytherins. I'd like those shades of grey clarified- being a Slytherin is not being evil, but ambitious and self-serving.

Here's to J.K. Rowling, and the world of Hogwarts!

Friday, July 20, 2007

Strolling down Memory Lane (without a ding-dong thing on my mind)

There was something I was going to blog about. I've beenthinking about it since Wednesday. I thought about it on the way home from therapy. It was really, really good, important, pertinent to other conversations floating around the blogosphere. Now I have a minute at the computer.

I cannot remember what I was going to blog about.

I'm fairly new at the joys of memory loss and brain hiccups. When I was young, "steel trap" was an understatement. According to teh new ABLLS report we have for Joey, he can repeat back a series of four numbers. At his age, they never figured out how many I could do, because no matter how many they gave me, I could recite them back. I could recite exact conversations I had with people years before, and in my head could even see the faces of participants and the setting around us, and sometimes even the exact floor layout of where=ever we were. I would have made a fabulous witness, but fortunately, I didn't witness much that was that important. I have retained snatches of these memories, but like most people, the majority of my life is now lost to the sands of time. Sand on the brain.

This began in earnest when I became pregnant wih Joey; and then the pregnancy with Andy excelerated it alarmingly. I understand this is normal, especially for women- the hormones of pregnancy actually cause brain damage. I just find it incredibly annoying to walk into a room and have no idea why I am there- or even how I got there. I've taken to hooking my keys on the curtain rod on the door, otherwise I'd take an hour every morning to find them. This time of year I stock up on 10-cent spiral notebooks, because I use them everywhere- whenever I have a thought, if I don't write it down, I risk losing it forever to the sand in the brain. I started using the engagment calendar in my computer. If changes don't make it long enough to be recorded there, I get into trouble- miss appointments, show up for one that were cancelled or moved, etc.

Growing up really sucks.

Wednesday, July 18, 2007

Don't Be Afraid

Abfh has put up a really funny and thoughtful response to one of my favorite essays I use to try to knock a clue into the clueless, Welcome to Holland. If you're one of my friends without special needs kids, I recommend reading both essays. They are both wonderful gazes into coping with a life that isn't going as expected.

One thing I mentioned in my comment to abfh is that there is a basic attitude and ignorance problem in the "normal" world regarding not only autism, but special needs generally. The example that goes in context here are the parenting and childbirth classes I took when I was pregnant with Joey.

The textbook that came with the class does have a chapter on special needs children. It mostly focuses on problems with premies, but it also mentions things like Down's Syndrome. Autism isn't mentioned at all. The information is mostly about testing, and "talk to your doctor." Thre is very little useful information. The possibility of having a special needs child was only mentioned in passing in the class itself- mostly Down's Syndrome, and a mention that some kids might need some time in the NICU, especially if they are premature.

Why omit this very real and natural possibility? Why not bring it into the discussion, and let expecting parents think about preparing for the possibility? It's like being on a plane to Italy (you knew this part was coming, didn't you) without even having the suggestion that landing in Holland would be a possibility- and in fact, many excited holiday-goers have no clue that a plane routed for Italy could possibly land anywhere but Italy, or even that other countries exist. I mean, what if the plane lands in Lichtenstein (a country of which I am also fond)? I know a lot of people who have never even heard of Lichtenstein.

Wouldn't it be far better to note the possibility, so that we can at least take a peek at a tourguide of Holland before getting on the plane, or have an idea of where the embassy might be? But this is not the prevailing attitude "out there" in the "normal" world. Instead, instructors are concerned about frightening new parents "unnecessarily." Frightening them?

Standing in front of new and expecting parents, I think the first thing to say is "don't be afraid." The second is, "expect the unexpected." Even "normal" kids have "special needs." Some people just need more support than others to be able to survive and thrive. A child with special needs- born with them or otherwise- simply needs some extra support. How much depends on the need. What we should be providing is some basic resource information. OK, your kid has special needs... now what?

Parents who themselves have special needs seem to have a firmer grasp on the concept, because the possibility is so very present to them. For people who have never really dealt with special needs and disability, the whole idea is foreign. These are people who have no idea what an "IEP" is, have never heard of taking a kid to a neurologist, a gastrologist, an endocrinologist, or may even not know what a perinatologist is. These things are not part of their world. When I spoke, once upon and a long time- over a year- ago, about the day the word "autism" came into my life, that is really how it felt. I had no idea. And folks, I'm a very educated person. I know why people think of Rainman when the word autism drifts in- its the only exposure people had, if they had that much. Nowthere's a couple other pop culture references, but no more real education out there for the general, run-of-the-mill Nellie or Nathan Neurotypical.

People with "special needs" and disabilities are different. Different is unknown. Different is scary. But why? Take the fear out of the possibility of having a special needs child. Special needs kids are kids, like all other kids, with their own talents and gifts to offer, and their own lives to live. Don't be afraid. All kids come with challenges.

Tuesday, July 17, 2007

What happened at school today?

Joey has been picking up on questions about his day. He's at least starting to understand that we expect him to make some kind of answer, and that saying something to the effect of "I had fun!" means the activity is likely to be repeated. He will answer yes and no questions with more or less accuracy, depending on how tired he is and how much of his attention you have.

However, he will not talk about school. Trying to get him to talk at all immediately after school is a lost cause. I am going with the working assumption that he is tired, trying to regain his bearings, and perhaps is simply unable to access language after a lot of hard work. I'll keep you posted as I test this theory, as he gains more ability to communicate with us. Anyway, no point in grilling him immediately after school. I'm lucky to get any words at all.

However, asking him questions about school is generally problematic. If he's really with me and I have his attention, he'll give me scripted responses (What did you do at school today? "I had fun, Mrs. Huff was at school today, Went to school" etc.) and will answer all yes/no questions with "yes" (Did you sing a song today? Yes. Did you read a story today? Yes. Did you play outside today? Yes. Did you turn your teacher into a frog today? Yes.) For other activities, I get some spontaneous answers. (Did you sing a song in Speech Camp today? Yes- Wheels on the Bus! Did you enjoy swimming today? Yes- sprinklers! Fun!) For school... nada. i have no idea what he's doing this week. The teacher sent me home a note on the first day, but since then, nothing.

I find this a little odd, and a little worrying. I could do some more peculation as to why school seems to be a taboo subject for question-answering, but it wouldbe just that- speculation. It's also worrying that I have no way to really supporting the school program at home. If I don't know what songs are being sung or what stories are being read, I can't keep up the theme at home. For example, if they are doing, say, Three Billy Goats Gruff, I can play the Leah's Farm Signing Time more, maybe plan to take him down to Maymount to feed goats this weekend, and read him fairytales with trolls, and talk about fairies and things with him. Or if they are singing "Wheels on the Bus" every morning, I can get out his buses and we can sit outside and watch the Fred Bus and the trolley go by, and talk about how people get where they need to go. But I have to wing it.

I'm starting to think he really did turn the teacher into a frog.


You know it's time to stop trying to discuss and just smile and nod when these words escape the lips of your conversation partner:

1. Yeah, normal kids do that, too. Or it's variant, "Yeah, my [normal] kid does that, too." Perhaps to a far lesser degree than my kid does whatever we were talking about. Usually I get this about meltdowns. "Yeah, my kid melts down in the grocery line, too. She hates to wait. She always wants a candy bar."
What I want to reply: "Really? Can she still speak well enough to press for that candybar she wanted? Yes? You have no clue what a meltdown is."
What I usually say instead: "Really? Must be tough to get her through the candy line. They need to keep that 'no candy/no tabloids' line open more."

2. You know, I'm a little autistic myself. This line is usually followed by some minor problem that vaguely suggests a desire for order, or habit. Such as "I don't like florescent lights" or "I like having my coffee with two and a quarter creamers." Small sensory issues are not autism, people. What really gets me is this usually forebodes some comment about autistic adults not needing services (see #3).
What I want to say: "Grow up."
What I usually say instead: "I have my foiables, too. If we didn't, life would be really, really dull."

3. S/he doesn't need {insert service here}, s/he just needs to grow up and learn to do things for him/herself. I wish I had someone to {provide specific service} for me!" OK, folks, I have mild executive dysfunction, some sensory issues, and an occasional stutter. These things don't get int eh way of functioning for me. As an adult, I am expected to clean my own house, keep my own records, shop for my own needs, etc. and I am able to do so, even if I need a little extra push with systems, ideas, and tools. It may not always happen, but I an able to make those compensations. Some people require extra people or extra equipment to make those kinds of compensations- such as an aide, or a communication board.
What I want to say: "So, you're saying a paraplegic shouldn't use a wheelchair, because he's got legs?"
What I usually say instead: "If you're having trouble with {specific service mentioned above}, maybe you should {hire someone to provide that service/buy equipment to help complete task.} [Since the most common one is about having an aide to do things like help with grocery shopping or household tasks, I am usually recommending a maid service or a good mop.]

4. Your child isn't autistic. He just needs a little discipline! This is usually followed by suggestions of violence.
What I want to say: "And where di you get your degree in child development or neurology? With a specialization in autism? And on what basis are you making your diagnosis? How would you like it if someone smacked you for wanting coffee in the morning?"
What I usually say instead: "Yes, we're really lucky, Joey's a good kid, working hard. However, his doctors all agree, he's definitely ASD. I see he's bothering you with his {unusual behavior- usually tracking}, so I'll let you get on with whatever you're doing- we need to go home."

5. Oh, he'll be fine. My cousin's friend's great-aunt's brother twice removed didn't talk 'til they were four! I got this a lot more when Joey was non-verbal, but it still pops up when people notice he's not speaking the way other five-year-olds speak.
What I want to say: "Did they say "momma" and "daddy"? Did they point to objects? Yes? Joey didn't."
What I usually say instead: "How interesting. Speech delays are fascinating. Anyone else in your family have speech delays?"

6. All children have eccentricities. This is another one of those red-flag phrases that means the conversation is about to bend in the direction of "Your kid's not really autistic" or the person has little experience with sensory dysfunction, ritualistic behavior, perseveration, or echolalia. Yes, some little kids like to repeat words. Few repeat entire episodes of television shows. Yes, some little kids like to jump around and crash into things. Few will want to do this for hours on end, and to the point of bruising themselves. Lots of little kids don't like sudden, loud noises. Some will even scream in response. Few will have hour-long meltdowns or have to track lines in the carpet for the next half-hour. And few would think the closing of a car door qualified as a "sudden, loud noise."
What I want to say: "Stuff it in your ear."
What I usually say: "Yes, that's how personalities are made. My guys sure are characters- didn't have much of a chance not to be, with me as their mother."

Sometimes trying to explain the difference between raising a normal kid and raising an autistic one is just not worth the effort There slittle point in trying to talk to someone who is telling you they have no intention of listening to a word you say. Tiem is at a premium here; I have better things to do. When you get that cue of "shut up- I don't want to talk about you or your kid" with the further implication of "I just want to talk about myself" sometimes the best thing to do is to oblige, and get out of the conversation pronto.

Sunday, July 15, 2007

The Bright Side

Sometimes when things happen, it's better to look on the bright side.

Problem: Your kids are bored in the store and start smacking each other for fun.
Cons: Screaming children in the middle of a crowded Walmart is never a plus.
Bright Side: You aren't going to be in the store very long, so you won't spend as much money.

Problem: Your kid knocks his head against your $3000 LCD HDTV, cracking the glass.
Cons: No TV. You think we can afford to replace a $3000 TV? And we checked- it costs even more than that to fix it.
Bright Side: The Oobi theme will no longer be piped at top volume through the house, and you may get "Sesame Street" out of your head at last.

Problem: Your kid gets hold of a sharpie pen, and loves to write on anything that is NOT paper.
Cons: You now have black scribbles on every surface imaginable, and some you thought were inaccessible. The furniture, the floor, the walls, the computer screen...
Bright side: You have a blossoming artist. You discover what will take sharpie ink off of surfaces. There are no more sharpie pens in your house.

Problem: Your kid gets carsick unless you stop every 30-40 minutes, and you have a four-hour (or more) drive ahead of you, and you can't cancel the trip.
Cons: The four-hour trip is going to take a LOT more than four hours, and you are going to need to take a LOT of extra clothing, and you're going to have a LOT of cleaning to do until you figure out today's pattern of warning of signs (did I forget to mention that they change?)
Bright Side: You will know where every fast-food resteraunt is between home and where-ever you are headed. You are about to have a very clean car.

Problem: Your kids have just figured out the trigger on your Wetjet, and the entire bottle of cleaner is now in a pool on the floor.
Con: You have little wet footprints through the house, cleaner on the floor, and you're going to have to clean it up, because you don't want little hands in floor cleaner.
Bright side: You are about to have a very, very clean floor.