Five Good Things

Ooo, meme games. Cool. I've been working all day, and will be working tomorrow, so being able to fall back on memes is a good thing. I don't have to think too much.

This one is from mcewen (Whitterer): five good things.

1. A long hot bath by candlelight with Sting on the CD player (MP3 player?) and a glass of wine in the hand. Followed by lots of moisturizer, powder, a very thick, soft white towel, and a warm bed.

2. Tickle fights. Whole family tickle fights.

3. Santa entering Herald Square. {That's my tipped hat to Thanksgiving!}

4. A bushel of crabs, a case of good beer (very cold), a long table full of friends, and all night ahead of you.

5. Four rolls of quarters and four rolls of dimes at Marty's Playland in May, when all the Christmas prizes are "half-tickets".


So... what are your five good things?

A Word About Snail

We're in Franklin Mode here, especially Andy, so I see way too much of it. But I have a favorite- Snail.

If you are unfamiliar with Franklin, the series focuses on a turtle who is generally a good kid, but he makes mistakes and then has to learn what to do about them. He has several friends who help with this. Snail is one of Franklin's best friends, and often share in interesting adventures.

Why Snail? Because Snail needs help with some things. He's slow, so he needs a ride to the bus stop or home. He can't be a hider in hide and seek because he'd take too long to hide. He cheers at teh soccer games because he doesn't have feet and can't run.

But best of all, he is never referred to as disabled, handicapped, or otherwise labeled. It's simply part of who he is- he's Snail. He's a snail. It's just the way it is.

I liked best how it was discussed in the episode "Nature Walk"- snail just has his own snail way of doing things. He's been a snail all his life- he's pretty good at it by now.

May that someday be the attitude towards all people. They are the way they are. They have their own way of doing things, and should be allowed to do the things they can do- and yet not be afraid to ask for help when they need it.

Andy Food Update

Today, he ate one french fry.

Perhaps it was a reward for Mommy, who took him to see the dinosaurs at Natural History after dropping Uncle Evan off at his apartment.

And then there were none

Anybody have a child who just completely stopped eating? We are on day three of Andy's Chocolate Milk diet. Granted, he has a bad cold... but to not eat anything? I can't even get this kid to eat cookies. What's the deal?

Wordless Wednesday: Once Upon A Time

A Day In The Life

There's nothing quite like going about one's day, looking up, and seeing this:



Especially when your first thought is: "I wonder how long that's been there?"

Meme x 8

Ok, Stimey. I'll bite.

8 Things I am Passionate About:

1. Allan.
2. South Asian art and culture.
3. Individualized education.
4. Raising my children (not just letting them grow up).
5. History and wildlife conservation.
6. Christmas.
7. Crabs and beer.
8. Spreading smiles. (Ever just walk around a store smiling at people to see if they stop looking so sour?)

8 Things I Say Often:
1. Honey/Hon
2. Oh my goodness.
3. Good job, Buddy!
4. You are going to drive me NUTS.
5. *disdainful grunt at hearing something absolutely ridiculous*
6. What did I come in here for?/I can't remember why I came in here.
7. GUUU-UUYS!
8. Squish a boy!!!

8 Books I have Read Recently:
1. Harry Potter (I just lump them all together...)
2. The Lord of the RIngs (again, I just lump them all together...)
3. Jane Eyre (it doesn't say "for the first time" after all...)
4. North American Indian Art
5. The Camel Who Took A Walk
6. The First Thanksgiving
7. Franklin Stays Up
8. Where the Wild Things Are

Oh, don't bedtime stories count? I don;t get much time for reading...

8 Things I Want To Do Before I Die:
1. See the Minakshi Temple in Madurai.
2. Start a local school dedicated to individualized education offering services in an inclusive setting.
3. Pay off my credit cards.
4. Go to my daughter's wedding. [Note that I do not currently have a daughter.]
5. Open an herb farm. On 1000 acres With a potter's wheel. Oh, and learn to use said potter's wheel.
6. Write a book about my grandmother and her painting career.
7. Meet the Dalai Lama.
8. Win the lottery, a really big one, to fund all these cool projects.

8 Songs I could listen to over and over:
1. The Good, by Rachel Coleman.
2. A Thousand Years, by Sting
3. Take On Me by A-Ha
4. I'm Alrght by Kenny Loggins
5. No Myth by Michael Penn
6. Walking in Memphis by Marc Cohn
7. Quinn the Eskimo by Bob Dylan
8. Alice's Restaurant by Arlo Guthrie

I could go on. But this is todays list.

8 Things That Attract me to my Best Friends:
1. Ability to call each and every one of them at 4 am if the need arose.
2. Quirk of character. Normal people are boring.
3. Strength of presence.
4. Ability to laugh... no matter what.
5. Acceptance. After all, I'm a nutcase.
6. Connection. Most folks are so closed off, they just can't connect. At least I can't seem to connect and plug into them.
7. Familiarity. I don't have to put on my Sunday Manners. Makes putting on Sunday Manners all that much more fun.
8. Willingness to share interests. I don't mind folsk who don't have common interests with me, but Ido like to know about them and what they find interesting, and why!

8 People Who Should Totally Do This Meme:
1. The bored person.
2. The blogger with no material for the day.
3. The person who likes memes.
4. The folks who feel they have an interesting list to reply with.
5. Someone who likes to "shift" memes to add interesting new twists.
6. A personwho has never done a meme before.
7. Somebody trying to look busy at work.
8. You.

Other parents

One of the other parents in our school district wrote an editorial in our local paper, and I thought I'd comment here, maybe a first draft of a response.

First, I'd like to be clear that I have mixed feelings about the author of the editorial, and I do know her son, but have not seen him in over a year. My feelings are mixed because I have great admiration for her ability and energy to fight for her son. However, this is a case where this lady got what she wanted at everyone else's expense; her battle casualities included the best preschool teaher I have met, and being on the preschool circuit for three years, I met quite a few- and certainly this lady was the best teacher we had in that preschool. On top of that, clearly we disagree about how to deal with autism. She has a clear agenda for what to do; I, as usual, believe in individualization.

I'll start at the beginning.. the scenario of devastation as the screening comes back "on the spectrum." I am all about fighting this right here. I understand the feeling of devastation. I also know the root of that pain is ignorance. When a child is diagnosed autistic, arents are caught unprepared. It may be the first time they had ever heard the word "autism." They know nothing about it. Until you are in the world of special ed, you have no idea what it is, or who is in it. Our culture values the "beautiful people", and anyone not fitting this mainstream idea of "normal" is cast aside one way or another. Your child is diagnosed with autism, and all you know is you have a long road ahead of you, and have no idea where that road is going.

I started this blog to chip away from the panic. I think the editorial was Gleibys' way of trying to chip away at the panic. There should not be any reason to panic. At least for once, we have the same goal in mind. Get past fear by making it something not completely unknown.

And the next step is, I believe worthy. You are doctor just informing a parent that Little Johnny is autistic. When this happened for us, the doctor gave us a book that we discovered was well out of date, the phone number for his nurse, and advice to call the school. Needless to say, this was woefully inadequate.

So here is my Quick Guide for Parents for the Day After Diagnosis:

(The Day Of Diagnosis, just go home and enjoy your child. Maybe put a fresh pot of coffee on, or take up drinking coffee.)

1. Here are the people to call:
Local Autism clinic, if you didn't get get the diagnosis there. Here, that would both Kluge Children's Rehab and Kennedy Krieger. Some centers, like Kennedy Krieger, take a year to get an appointment for anything. Kluge takes a couple of months. A year is a little long, but a couple of months is OK. This is urgent, but not an emergency. Besides, you have other folks to call and get going.
The local school district. Many of teh supports your child needs are the responsibility of your local school district. You want to get a feel for the place, have an eval, get into the system- even if you decide to homeschool.
Your insurance. KNow what they will cover, and what they will not. Many insurances will cover OT without batting an eye, but will not cover speech therapy because it is "educational." Some insurance see "autism" and cover NOTHING. Some see it and cover EVERYTHING. Some therapies are considered educational and not medical- and this can be different from insurance to insurance, state to state. You may choose interventions that are not covered, and you need to know what you will be paying for, how much it will be, and what you will need to do to cover it.
The speech pathologist. Some centers have them, some local hospitals have them, and there are lots of private practice ones. Be sure they are going to work on communication, not just speech. Do they do sign language, switches, PECS? How do they use these as tools for communication, and not just learning to speak? How do they use them to encourage- but not force- speech? Do they also work with reading and other visual communication?
The physical therapist. Many autistic kids have gross motor problems that need to be addressed. Many don't need a PT (Joey doesn't need a PT).
The occupational therapist. Ask specifically about sensory integration therapies. Most autistic kids have some form of SPD (though not all!). You don't want just a buttons and zippers OT, you want one that will take an integrated approach and can address the needs of your child.
Your pediatrician. Be sure they are immediately aware. Ask questions. What will they do for you? What do they know abotu autism? Are they willing to do some research or attend a conference or workshop about autism? If you have a doctor who seems ignorant of autism- and many are- and is unwiling to beome educated, then you will be needing a new ped.
Psychologist. You may need some testing done in ways the school doesn't accomodate, some understanding of your child's mental health, and yes, you may need medications. Be prepared.
Your local Disability Resource Center. These types of organizations can help you navigate local resources, prepare for things like Medicaid Waivers, even help you understand disability law and rights. They can also help you network with other parents of disabled children.
State agencies for the disabled. Many states have offices specifically geared to helping people with disabilities and protect their rights. Its a good idea to be familiar with these offices and what they actually do in your state or locality.
A Lawyer. You're about to become an expert in disability law. School districts and insurance agencies can be not fun to work with. Be prepared. Find a lawyer and advocate who deal in disability and educational law. BE prepared in case you run into problems- its a lot easier to prepare for a fight if you already have your champion lined up, rather than waiting until you have a problem. I haven't met a parent yet who didn't have a problem.

I know that is a lot of phone calls. Prepare ahead of time- get a big loose-leaf notebook to keep paperwork, evaluations, even phone messages in. Just keep it by date; when you make a call, note it on a sheet with the date and a summary of what was discussed, and put it in the notebook. When the evals come, just put them in the notebook. Bills. Letters. IEPs. Anything. I even have Joey's birth certificate at the front. I'm on our second 3" binder.

2. Here are things you need to do:
Relax. Your child hasn't changed. You just have a new label to point you to resources you might need.
Read. The books I recommend are: From Emotions to Advocacy by Pete Wright.
1001 Great Ideas For Teaching and Raising Children with Autism by Zysk and Notbohm.
That will give you a start. I encourage folks to include their favorite resources in the comments.
Read some more. You will need to research different methods and strategies used with autistic children. Some I can think off the top of my head are ABA (Applied Behavioral Analysis), PECS (Picture Exchange Communication System), Floor Time, Sensory Integration, Therapeutic Listening, GFCF (Gluten free/Casein free diets) {and other possible allergies and diets- if your kid has sensory issues, allergies can drive them crazy!], ABLLS (Asessment of Basic Language and Learning Skills), TEACCH (Treatment and Education of Autistic and related Communication-disabled[or handicapped] Children).
Get online. Check out the links I have in the sidebar. I've developed a handout for new parents here in Virginia, I'll be happy to email it to you. Also, you can network with more great folks like us. :)
Go out and have some fun! Remember, your child hasn't changed! Go out and do the stuff your child likes to do! Try to introduce your child to new experiences- as you would any child! These outings may take more preparation(and work) than for non-autistic families, but it's worth it. Keeping kids locked in the house will drive you crazy, too, and deny them living. Yes, some folks will stare. You may get unkind comments, or offensive comments. But you know what? You would have gotten them even if you didn't know about autism. Now you know how to support your child in the face of these people- "My kid's doing a great job with this new experience. What's your problem?"

Summary? You now know your child is autistic. Now you have a better plan for moving ahead and educating your child- which now makes your life better, not worse. Yes, now that you know the kinds of resources you need, you now have work to do to tap those resources- but now you have narrowed the field to the resources you may need!

See? Not scary. Just needs a little information!.

The Turkey is a-comin'!!!

We are all excitement here. Evan is coming.

My house is a disaster. Joey is sick. The guest bedroom isn't set up, and is in fact still full of boxes of I-have-no-idea-what-because-I'm-a-packrat-queen. I got the shower re-caulked and a new showerhead, but the showerhead isn't installed. Andy is hoarding again. But it's okay. Evan is coming.

Families are funny things. Families usually have two parts- the part that you were born with, and the part that appears over time. Folks who don't get the whole humanity thing forget about the second part of the family (often while complaining bitterly about the first part). They see them as outsiders, keep them at arm's length, forget to let them in and enjoy them. More and more and more people I meet are like that- there is an isolation of humanity in today's culture. We have become so focused on nuclear "family" that the rest of it drops into a grey abyss, our children not given the skills and understanding to expand their families and relish them. After all, all families are strange. They are full of people. People are here to be loved. Too many folks now expect people to meet certain ideas and expectations before they will even acknowledge the other person's existence, much less refer to the person as a "friend." Instead of taking people as they are, and start from there, and see what happens, they automatically exclude everyone until proven otherwise. Safer? Maybe. But you miss out on a lot of family.

Joey loves the world and the world loves Joey. People like to be accepted, no strings attached. Joey has a knack for that. "Hi, Friend!" he cheerfully calls to all and sundry. You're invited- you’re a friend until proven otherwise. Andy doesn't have this talent. He's far more of a question first, be friends if the answers are OK kind of guy.

Anyway, Thanksgiving is one of those family holiday things. People's families get together and celebrate being on the earth and get to have some time to just hang out and enjoy each other. We can appreciate Aunt Susie's love of carrot cake, the lopsided way Cousin Johnnie smiles, take joy in Grandpa's old war stories and Grandma's taste in clothes. We can pick up on the little clues that speak to who we are.

When we grow up, and go out to make our own little nuclear units, holidays are great times to remember the rest of our families. Those brothers, sisters, aunts, uncles, and cousins who may not share our bloodlines, but remain our families. Those connections to humanity that remind us that we're all in this together, we might as well enjoy each other for this brief shining moment.

Evan is coming. Christmas is upon us.

I love Christmas.

Wordless Wednesday: Retrospective (Andy)

Moral of the stories: They aren't little for long.

Wordless Wednesday: Retrospective (Joey)

Sending him off to school

As the bus pulled off this morning, I had myself a nice little cry.

I've been sending Joey to school now for three years, this is his fourth. Oct 12, 2004. that was his first day of school. My little two-year-old baby, placed on a big yellow bus to whisk him off into the unknown. Without me.

Folks who read Tibetan Star's Aspie Home-Education know that I am a supporter of schooling. Actually, I'd like to correct that. I believe in individualized education. For everyone. And I believe that education occurs 24 hours a day, seven days a week, so most parents need to remember to be vigilant about educating their child, and what thir child is learning, all of the time. Most of the parents who communicate with me through this blog seem to be doig a very fine job with this. Some folks send their kids to residential schools. Some keep them home. Most mix the school- public or private- and home schooling, with a generous peppering of therapies and activities. We've become experts at individualized education. After all, the laws for our kids require it. We know they have a right to it, and it is our responsibility to preserve their rights.

One of the main advantages I see to school is that Joey learns independence. When at home, if Mom will do it for him and he knows it, he wont do it. Note the period. If I want him to learn to do something independently at home, I put Allan in charge of it. Allan is good at not letting Joey get away with letting others do things for him. You can pull up your own pants, Boy; let's see you do it! [pause] Good job!Allan taught him to drink from a cup. Allan taught him to dress himself. Allan is teaching him to bathe himself, and take a shower. He's a good teacher.

I miss my Joey. I miss having that little face with me, wandering through Tuesday Morning, leaning close together. I miss taking him to the farm, to the zoo, having him all to myself to show him the world at his own pace.

Don't get me wrong, I love my Andy. He's a good little buddy, and he's growing up with lightning speed. He loves seeing the world, too. He loves leaning against Mom while riding in the cart. He loves to look at the fish at Walmart. He loves to chase the chickens at Snead's. He loves to point to things and let me know what is around him. I'm more and more glad that we pulled him out of that preschool every day, because he's so much fun.

But I miss my Joey. We don't have a lot of minutes together, just us. In fact, we go to church for half an hour on Saturday evenings- and otherwise, I always have Andy, too. Andy's pace is so different from Joey's that we can't just slow down and let Joey process and look and do what he needs to do. I have to keep them together.

When Andy does finally go to preschool (and he will, because he has to have some experience at school to be successful in kindergarten these days), I may pull Joey for a couple of mornings. I'm planning little wanderings together. I trip to the farm. A wandering over to the park. Maybe a morning, just us, baking cookies or making playdoh or doing a craft. It won't be as easy as doing these things with Andy, but that would be part of the fun. Seeing Joey take things in his own way, at his own pace. Taking a minute to just be Mom and the Buddy-Boy again.

I miss my little Buddy.

With Love, From Home

Just putting out my plug for Operation Love From Home. Whatever you think about the war, remember that lots of folks over there would rather be over here with their families and friends. Let them know we support them, miss them, and care about them. Send a card. Thanks.

Just a moment of quiet

Andy isn't feeling well. He's fallen asleep on the couch, all nested in the cushions, with Cars on. The house is so quiet. Not quite as quiet as when I have no one here... but very, very still as the baby sleeps.

I thought I would just share a little moment of that quiet with you.

Exhausted

We've been having so many good days with Joey lately that when we get a hiccup, it can be a little jarring. JOey came home from school today absolutely exhausted. I don't know what they di dto the child, but he is tired. Oh, and he had four worksheets to do. Oh, and an assignment to look for things that begin with C. Oh, and we have to do tomorrow;s homework tonight, because tomorrow we have double therapies, one in the Stafford clinic. And we had the drum lesson tonight.

Something was amiss with the toy he decided to play with, and we could not get him distracted from it. Meltdown city. Then we had to do that homework and go to music lesson... yes indeed. One tired boy + way too much to do= not a good thing.

He banged on the drums pretty good. Mr. Shelby wanted him to tap the high hat with his right hand on eighth note counts and the snare with the left on alternate counts. OK, for those of you not familiar with drumming, this would require him to cross his hands, and do two different rhythms with each hand. That lasted all of about two seconds. For one, Joey hates crossing his hands, and dislikes crossing midline. Then trying to get those hand to do two different things? At the same time? Riiiiiiiiiiight.

Of course, that's why I have him in drum lessons. Bilateral coordination and processing and all that. But remember, he was tired before we even got there.

And I had no gum with me, becuase I am an idiot.

These are the kinds of afternoons that remind me not to take good days for granted. Don't forget the emergency sensory support kit. Stay on my toes, because you never know, and trying to get clues about what is going on from Joey when he's having a crazy day is like trying to get a cat to read braille. It's not happening.

Questions

There was a good sale downtown today. One our favorite stores is going out of business. That happens when teh world prefers Walmart. But I digress.

When Joey came home and Andy awakened from his nap (wow... he took a nap!), we (Grandma and I) loaded them both into the car, and headed for the shop. We spent some time explaining about going Christmas shopping and that sort of thing, the usual banter to prepare Joey for an unexpected outing, especially on a Friday (his afternoon off, when he prefers to stretch out on the livingroom floor and watch something preferred, such as Little Bear or Cars.) We've been having some trouble with Joey. He's been eching some phrases that have resulted in us emailing the teachers several times to ask what's happening at school- phreases like, "Stop talking now!" and "Eat your breakfast and leave!" and "You're going to Mrs. T!" [this is a reference to being sent to the principal's office]. This week, he's been parroting these things at the bus aide, who was rather upset this morning, to the point I had to remind Joey to be respectful and behave himself on the bus. Joey loves the bus. What's going on? Anyway, theres been a lot of echoing, a lot of motor-mouth lately, and now we're disturbing his schedule again to get 20% off of a bunch of stuff we don't need and possibly polish off my Christmas shopping list.

From the back seat, a musical little voice wafted:

"Where are we going?"

I automatically replied, "Down to the shop, hon."

Fortunately, we stopped at a stop sign. I looked at Grandma. Grandma looked a me.

Joey asked us a question.

There was no prompts, no cajoling, no setting up. It was a question, like any other five-year-old suddenly whisked from his house into the car and heading down the street. Where are we going? Perfectly natural question, especially if you weren;t really paying attention to teh jabber of your mom, talking about Christmas and stuff. Oh, we're going to the shop. OK. He was satisfied.

We were left to collect our teeth from the floorboards.

The Best-Laid Plans

It was cold and raw outside today, so Andy and I stayed home. My mom had a brilliant idea- we should make Rice Krispie Treats! So out we bundled to get Rice Krispies and marshmallows and butter.

It was going so well. He got the marshmallows- minus one- into the bowl. We watch the marshmallow expand in the microwave. We measured out the Krispies, six cups. We talked about measuring. He liked putting his hands in them, and he decided they tasted good. All systems were go.

Teh marshamllows came out of the microwave, we dumped the Krispies in, and stirred together. We spread them into the pan- my big pan, so they wouldn't be so thick and cut little mouths. So far so good.

Then I cut them. Not so good, as Andy wanted to cut, too, and we had to be told to put th knife down rather sharply. We had to wait a minute so they could cool.

Then Mom tried to hand Andy a Rice Krispie Treat.

No go.

After asking, begging, pleading, modeling, modeling again, more begging, asking, showing... no go. He finally would take one into his hand, but he will not put it in his mouth.

Can I just say, "more for me" and go to bed now?

Wordless... Thursday?

Pics from the Tuesday Adventure. Sorry, i forgot the camera and bought a toss-away, and had to get the *ack* film developed.

Planning an Adventure

Tomorrow is an exciting day. It's Election Day... which means, in Virginia, kids don't have school. I will have my Joey home all day long! So it is time to plan an Adventure!

So tomorrow I will pack my two guys into a car, and head off into the Great Wide Open, hopefully with Grandma kidnapped and safely stowed in the front seat. The world shall be our oyster. Adventure awaits.

The current plan is to take the boys up to DC to see the dinosaurs again. We usually do something new, but we do have to be back for a 3:30 speech appointment, so i kinda need to have an idea of where we are going and how long it will take to get back. This time, I hope to remember to take the camera. I keep forgetting it. I want a shot of Andy's face looking up at a real T-Rex. I want some footage of Joey watching the little video abotu fish mouth evolution. I want to buy overpriced sodas and cookies and eat them in a little cafe with fossils displayed in the tables. It's just one of those things.

But you never know with Adventures. Perhaps we will find something Completely New. Maybe I can entice them into the botanical gardens, or Air and Space. Maybe we'll take a wrong turn and end up at the zoo. Or the children's farm at Oxon Hill. I'll keep you posted!

Systemic

One of those little irritations in life I have is something called systemic poison ivy. The most common form of systemic poison ivy is when you breathe in smoke from a brush fire, the oil gets into the bloodstream, and you have a major breakout EVERYWHERE. I had a firend when i was little actually get poisin ivy INSIDE his mouth and throat, and they think it was even in his stomach. I don't get this kind. You can also get it from being allergic to the substances your body makes in the reaction. My mom gets this- her poison ivy can get so bad that you can jus sit and watch the patches bubble and ooze before your eyes, like some Martian landscape. I don't get that, either (thank GOD).

I get the kind that once I start seeing it anywhere, it starts to pop up as a bubble here, a bubble there, all over my body for the next few months. It is highly annoying.

My yearly poison ivy has begun. I get it this time of year because I am hacking down the autumn clematis, and invariably the ivy gets in it, and somewhere I have an inch of skin uncovered. Only this year I was particularly stupid, and didn't put on my gloves to take down the clematis. So naturally I got angry red welts across the back of my hand. Now it's startd the spreading stage. Its moving up my fingers, and I have single bubbles here... there... yep. The itching has begun.

Too much of my life is like that. Consequences you can do nothing about now, popping up here. There. It all becomes systemic, in a delicate system. But then, sometimes I think, at least I don't get poison ivy like Steve used to. Or my mom. Just an annoyig bubble or two, here and there. I can live with that. No prednisone required.