Baby steps

Joey is in the bathroom, using the potty. He did not inform me before going. He managed to pull his pants down without removing them completely. He is in there singing Signing Time songs, happy as a clam.

That's my boy.

Reflections

NIksmom from Maternal Instincts has bestowed upon me the Blogger Reflection Award. The award “should make you reflect on five bloggers who have been an encouragement, a source of love, impacted you in some way, and have been a Godly example to you. Five Bloggers who when you reflect on them you get a sense of pride and joy… of knowing them and being blessed by them.”

Knowing that I would make anyone feel like that is humbling, but also makes me happy. It was why i started blogging- to help other parents understand they are not alone, it's not just them, and it is OK to be human while raising your kids, especially kids with special needs, and specifically autism. I was taken aback by how many of our local families were so completely emotionally overwhelmed, physically overwhelmed, and feeling like they were people unworthy of help and support. It doesn't take too many people walking up to you and telling you what a rotten parent you are because your kid is {insert coping behavior here} before you wonder- how many other people think this? Are they right? Am I doing this all wrong? After all, I don't see anybody else's kid {insert coping behavior here.}


Here are the rules for this one:
1. Copy this post (meaning the rules).
2. Reflect on five bloggers and write a least a paragraph about each one.
3. Make sure you link this post so others can read it and the rules.
4. Go leave your chosen bloggers a comment and let them know they’ve been given the award.
5. Put the award icon on your site.

Hmmmmmm...
This is hard, because I just hit up eight people for another meme. The idea behind this one is basically "five sites that make you feel supported and encouraged and why."
That would be the entire Autism Hub. That is, after all, why I joined. But I seriously doubt everyone on the Hub would be very happy with me if I tagged everybody on the Hub- though I certainly would be interested in knowing which blogs other people found helpful and supportive. We could all use a back-patting break, too. It can be lots of fun to let others know how much you like them. Try it, you'll see what I mean. Never miss an opportunity.

So I'll take these as the top five blogs I read when I am feeling down, and need that little lift in life (kind of like Christina's couch):

McEwen's Whitterer on Autism. There is nothing quite like knowing your house isn't the only one where "goldfish crackers" is a food group. Knowing that we're not the only ones blessed with reverse grammar, and understand it, or that phrases echoed may be only hints at what is being said. Her boys seem so much like my Joey, an I pray he is doing that well when he gets to be their age. Additionally, I get a glimpse of the world of "special needs sibling" and the issues Andy may face as he also grows and becomes more aware. Grace, dignity, and humor infuse the world of raising children, especially children with autism, and the quirks and questions which come with the territory. I read her blog first thing in the morning. I read it last thing at night. And if the day is hard, I've been known to open it up and read it if I get any moment during the day to do so.

Monkeygirl at Musings of a Highly Trained Monkey. Monkeygirl is an ER nurse, and her blog is mostly about life in the ER. I started reading her because Dr. Flea recommended the site. Dr. Flea's blog is sadly no more, but he had great taste in blogs. Monkeygirl's commentary is a reminder to remain sane in the face of insanity, a reminder to buck up and do the needful, and no matter what happens to me today, at least I'm not a complete idiot. Land whale, yes. Idiot, not yet. I promise, Monkeygirl, I am not allergic to NSAIDs.

Stimey at Stimeyland. OK, I admit it- I started reading Stimey's blog because she started leaving kind comments here, and then I discovered she is my age, and has a child named "Quinn." Seriously. I love that name. But the blog is a series of glimpses into living with kids- and a good reminder that kids are kids, no matter their "issues." Besides, she's funny. ;)

Evan at Kiribako. Evan and I have been friends for a very, very long time. His worldand he sees it is definitely worth reading about. It always reminds me that I'm not the only one who sees things on a different slant from the norm, and that sometimes "normality" is completely nonsensical. Also, Evan tends to see and be interested in details of existance that I find fascinating, and wish I knew more about. He also reads interesting books I never get time to read.

And finally, Club 166. Sorry, Joe, but there it is. Club 166 is another parent slogging through the school system, with some realy good advice for getting through IEP meetings and practical problems. If you want some solid, grounded, clearly written views on raising kids and maneuvering through the joys of special ed, go read Club 166. This is a guy who puts some thought into how to be a good parent to and advocate for his children. Let us go and do likewise.


I skipped Niksmom because she tagged me in the first place. I could definitely list more, but then we'd run outof people to tag. I know this is a parent-blog heavy list, which may irk some people, but when you're in the trenches of parenting, often it is knowing you're not alone that means the most, and gets you out of the rut.

Highs and lows

Yes, here we are, on the roller-coaster of parenting. Gotta love it.

We had a level 7 today. Something's up. I need to get my otoscope working.

On the other hand, he ate meatloaf for me yesterday, and ate a PB&J- without taking it apart- today. What's up with that?

The way Joey moves forward, sometimes the move ahead in one area leaves him overloaded somewhere else. We're hoping that the reason the meltdowns result is because I am doing something wrong in not picking up on the processing and overload. After all, I can fix a problem with me.

The meltdown today was over a doorknob. The knob to the basement, which is Joey's therapy room, sometimes comes off, because I'm an idiot and can't figure out how to keep the screws tight. No other doorknob does this, so I'm a bit at a loss over it. Anyway, it came off, and I couldn't take care of it right that instant. That would not do. The minute I was able to secure his safety, run down the stairs, get the knob, and put the contraption back together- like a light switch, it was over. The world righted itself. I have no idea why the doorknob was suddenly so important, but it was, so there we are. Next time, I need to move faster.

Level 10

The word "meltdown" has become a commonly batted about term in the parenting world, yet with widely divergent meanings. A meltdown can be anything from a very loud whine at an inopportune moment to a screeching ball of violent nerves quivering on the floor. Things that other parents consider to be "meltdowns" I don't even hear anymore- or more precisely, I see the causes quicker, and thus can move to diffuse the situation rather than just assuming the kid is a freak and escalating it.

Now, I can't say that I am some master of diffusion. Meltdowns, by their nature, tend to escalate. If we as parents think meltdowns are scary and nerve-wracking, try having one. But what most people label as "meltdown" isn't even close to what I would consider one. Disappointed children who pout when they don't get their way aren't melting down. A tired child who starts to cry when you want to do just one more errand is not melting down. A child throwing a little temper tantrum over not getting the latest Transformer toy is (usually) not melting down.

For our house, "melt down" is a term that is reserved for a situation that involves a great deal of screaming. They are almost always connected with frustration. One is not "melting down" until one is no longer functional. A Level One meltdown is when a frustrated child gets into my face and empties his lungs (sorry, all boys here), so that he is unable to complete the current task. Nothing elseis happening, just the screaming, that very loud alarm of "I cannot do this right now, I don't know why." A Level 10 involves injury to all and sundry within crashing distance of the child's body. This is the very loud alarm of "I cannot deal with existance as it is right now, leave me alone." All meltdowns require a great deal of patience. The child cannot seem to end them himself; there are a whole bag of methods to help de-escalate and calm the child, and you may need every single one to restore calm enough for the child to re-engage their own coping and equilibrium mechanisms.

This time last year, we were still in almost-daily meltdown, usually Levels 1-3. Summer has always been particularly bad since he started school. We never had them before he started school, because we just adjusted the whole world to him without even thinking much about it. Sensory overload was rare, and when Joey did make a peep, we jumped. I could take him almost anywhere when he was a baby. Joey tended to be under-sensitive rather than over-sensitive. HIgh pain tolerance. Hates dark rooms, loves super-bright ones. That sort of thing. Also, the lack of communication skills meant that I often understood and adjusted to/for him, but he really couldn't tell people around him what was going on. Anyway, summer is bad news for the ears and the nerves. The wild changes of routine, the long daylight, the heat... all big no-nos for sanity around here. We've mostly headed off the worst of it this summer by having him in programs, getting him into routines, and now with school. He's stayed pretty focused and been able to really enjoy activities and be able to talk about what is going on around him. Celebration times! I need more champagne. :) There are still times he melts down, but for the most part, I can track what the antecedents were, and can see them coming, so can brace for intervention.

Joey had a Level 8 today. I am in the middle of tracking down what exacly happened. I mean, I can tell you the immediate trigger, and I've tracked down a good many of the small events that fed into the situation, but bigger meltdowns can sometimes be tricky, and are almost always a shock. Was this just an accumulation of small irritants, or did something happen that I need to know, say, at school? Did all the shifts and changes just overwhelm him, or was there a sensory issue with the heat that took him over an edge, or is there a bigger problem that needs to be addressed? My jaw would like to know.

Fortunately, this occured at the therapists' office. For one, that meant the moms who were there were interested in helping, and understood what was going on. None of them had ever seen Joey go into meltdown before, so they were taken aback, but all the moms had kids that melt down more readily than Joey, so they knew what it was. For two, the OT could intervene immediately. Once the worst was over, we got Joey some deep pressure and other input that was calming, with the good equipment (bug hugs and big exercise balls are good things).

Now that it's over, the detective work goes into full swing. What happened? How can I help him pull out of the spiral? What did I do wrong that resulted in such explosive escalation? But this work gets easier- or at least faster- with practice. You start knowing hat questions to ask, what clues to consider, which people to talk to. You become an expert, like any other endeavor, and thus make more headway in less time. With good luck, I will find all the peices and be able to sort out the bigger picture, so that I can intervene and help before the child goes into overload and explodes.

A long, long talk with another mom

My best friend is a lady who lives down the street with three hydrocephalic boys. I’ve mentioned her before. And whenever I am feeling particularly beat up, my butt usually ends up on her couch. Needless to say, we had a long talk this morning- about yesterday.

Being a “special needs parent” is not like being another kind of parent. Apparently there are people here who don’t know that, or don’t want it to be a reality. But it is. Parents who do not have special needs kids really and truly have no idea what it is like to have a special needs kid, or what it is like to be a special needs parent. Most parents are living it up in Italy, and we’re over here in Holland- or, probably more properly, India.

I love India. No, the real India, I mean. I spent three months there, and a separate three-week trip before that. I wish I had been there longer. I’ve never been to the real Holland, but I’ve been to Belgium and Germany, both of which are spotlessly clean, at least in the tourist districts. They are beautiful, wonderful places… but clean. Very, very clean. And in many ways, very like places in the US.

India is a whole new world. There is dirt, grime, heat, poverty, cows, beggars… the whole crunch of human life. Clean water comes in bottles. The hotel room uses a geyser for hot water, and it only will heat a couple gallons at a time, and then you use a bucket and cup to actually take the shower. Air conditioning is a rarity- as is refrigeration. In the villages, you’re lucky to have running water, and you have electricity for only a few hours a day (and not consecutive hours). Paved roads are a city “thing,” motor-rickshaw is the transport of choice, and cows have the right-of-way. Living in India when you expect the standards of US living is a really big challenge.


If you spend your entire trip in India focusing on these challenges and wishing you were in an international hotel, you really miss the wonders that are India. You would miss sitting on the far side of Sanchi Stupa 2, in the breeze, with the scent of ashoka blossoms and the plateau stretched out below you. You would never see a shrine in the middle of road, draped in orange and yellow garlands and filled with carnations, while incense and the ringing of bells fill the air. No one would be able to run up to you from the local temple and offer you prasad, or ask you to hold their baby while they take a photo. You would never see the lights of navaratri or the colors of a fruit market, stacked high in the morning. You’ll never share lunch with a troop of monkeys. If you don’t go into that cave that smells of bat dung, you will never see the paintings of Ajanta.

At the same time, what’s so wrong about sometimes wishing you could stay at an international hotel and have a nice, gourmet dinner? Or just be homesick, wishing we were in a comfy living room with a TV, wearing our favorite pajamas? Our problem is whenever someone here mentions being homesick, we’re told that India is a beautiful place, it’s where we are, and we shouldn’t “be that way.“ The Dutch and Indians often have no idea why Italy is such a big deal, and get insulted when someone wishes they had seen the Sistine Ceiling. Did these people never wish they had won the lottery? Never wonder what life would be like if they lived in a different house? Have they never seen the Monty Python skit about the accountant who wants to tame lions? But we, as parents, are not permitted to be homesick. We aren’t allowed to wonder about dreams we once had, or mourn their loss. After all, we’re moms and dads. We’re not supposed to be human…

Meanwhile, my long talk with my friend…

We “forget” that our kids are “disabled.” This is just who they are. When you live in India, India is normal, and you spend weeks on end not even thinking about Italy. Our kids wouldn’t be who they are if they were not disabled. On the other hand, they wouldn’t need the help and support for the rest of their lives, either. Joey could play with the other kids instead of spending whole days in therapy-- basically, in school. For those of you who have forgotten, most kids like vacation a LOT better than school. But then, most kids don’t scream bloody murder when they are served their spaghetti in a blue bowl instead of a red one, or when they have to go to the park instead of the pool. They can swallow their food without being taught to do so.

My friend is sometimes sad when she sees kids walking down the street, hand in hand with their mom. Her kids will never walk down the street. She will probably never know the feeling of having her children tell her “I love you.” She doesn’t dwell on it. Her children are not a burden to her, she takes pride in every little accomplishment they achieve, she loves them and supports them. We trade phone calls: “Max sat up by himself today!” “Great! Joey answered a question today!” “HOORAY!” They are our children. But there are those moments when we are reminded that life was going to be so different. We were going to have jobs, spend afternoons in the park, go for spontaneous trips to the zoo or the grocery store. It would be nice to be able to join the other parents down at the local eatery for a beer now and again. Just now and again. According to many folks who emailed me, having such thoughts and moments make us anything from mean, horrible parents to outright evil people who should give up our kids to the State for foster care. Our lives are not as scrubbed and tidy as Holland. Should I wish it were?

The real world really has dirt, and poverty, and heat, and irritation, and inconvenience. It is beautiful, anyway.

Repost: Time

From last summer.

Allan and I came up with this, and are seeing if it starts making its way around the world as a chain email:


You need to be taking more time for yourself when:

Your hair repels water.
Your babysitter is shocked to hear from you, because she thought you moved.
Someone asks if you've read a good book lately, and you expound a postmodernist deconstruction of Pat the Bunny.
You consider anything other than Kraft Macaroni and Cheese to be gourmet cooking.
You have the "Sesame Street" theme stuck in your head, and the only song you can think of to get it out is the theme of "Blue's Clues."
You have to toss beer/wine from your fridge because it's too old to drink.
The last hit song you remember is "The Macarena."
Your idea of a fun night out is a trip to Walmart.
You think sleeping is a waste of time.

Gone

Yep, as expected, my last post was clearly taken as I feared it would be. So I'm just going to take a break for a while, I think. Parents are not permitted to be frustrated, and I find that insanely frustrating. TO TEARS FRUSTRATING.

Tagged!

Wow, I got tagged! I get to do a meme! You know, someday, I may not be excited about this... but today, woo-hoo!

The rules:

1. Let others know who tagged you.
2. Players start with 8 random facts about themselves.
3. Those who are tagged should post these rules and their 8 random facts.
4. Players should tag 8 other people and notify them they have been tagged.

I was tagged by McEwen, the Goldfish Queen.

Now, for some random facts:

8 things that most people don’t know about me:

1. My grandmother was a pretty popular wildlife ("Duck Art") painter in the 1960's-1980's, Marie Conway. I have her paintings all over the house. The random fact is actually that I wish I could paint.

2. I have an ushnisha. An ushnisha is a cranial pertrubance on a Buddha. Originally in art, Buddhas were shown with their hair in a bun or tied up, to reference his life as prince. However, it later became simply an enlargement of his head. I have a very small one. I was born with it. My mom was told it was an "old wound." No, she did not have an amnio. I expect to be a Buddha in about 15 lifetimes. See you then!

3. My favorite beverage is Fresca. I really liked the fancy cherry Fresca, too, but they don't sell it around here anymore. My other favorite drink is Almond Smash. I don't think they make that anymore, either.

4. I can snap my toes.

5. I do not like dogs. I do not know why.

6. I like to do ballroom dancing. I was pretty good at it when I was in grad school. My brother taught me to waltz when we were young, and I was fascinated ever since, then finally took classes. The problem is, the only guy I really want to dance with doesn't like ballroom dancing.

7. I have a PhD in South Asian art history. Even I forget sometimes. One of the school admin people calls me "Dr." and I always turn and look around to see who else he is talking to. I think he finds this amusing. I actually have two master's degrees. I do some adjuncting, but I've been doing it for so long, that's not much of a reminder (you don't need a PhD to adjunct). I prefer teaching in person to online, but most of my classes are online because of the therapy schedule.

8. I am a Tolkien affectionada. Yes, we have the full set of the books Christopher Tolkien put out of Tolkien's notes and unfinished work. I like the Silmarillon better than the Lord of the Rings proper, though I usually just think of all of the books as a single narrative cycle. I like the movies, but hate what they did with Faramir, and the part where Frodo sends Sam away- both completely miss the point of the storylines. I could go on... and on... and on... I'd start a blog, but I'm sure there are plenty of Tolkien blogs out there already, and I already blog too much.

Who would I like to have 8 random facts about? Hmmmm...

abfh is a fascinating person who always comes up with observations about her own life and experience that give me some insights into possibilities for Joey's view of the world. I'd like to know more about her.
Club166. I know he's busy, but I'm sure he'll get to it when he gets a minute.
Evan. I always want to know more things about Evan. Besides, he'll come up with super-fascinating facts, even if he doesn't think they are.
Zoomy needs more to do while we mourn for the Bridge. Besides, he's such a sweetie!
Niksmom is a very interesting lady, and she has such a wonderful blog. I could just hug the stuffing out of Nik, he is so cute! (Edited because I just realized I mis-spelled "Nik". :P )
Stimey leaves lots of nice comments, so I want to know more about her, too.
Vab (Autista) also leaves lots of nice comments that have piqued my interest. Another nice blog, too.
Kristina (Autism Vox), as if she doesn't have enough to do and doesn't blog constantly (gotta love a blog that often has several posts every day to read! Thank you!).

I didn't hit up MonkeyGirl because she just did this one not that long ago. But I always find her interesting, too. ;)

And I should mention that I don't mind if people I tagged don't feel like doing this and don't. But do know you're being thought of. :)

Clams

In another big banner, get out the prize box, chocolates all-round, where's the champagne day (We're on a streak! Look out, world!) we have added a new food to the diet. I would not say that Joey is a complete neophobe like Whitterer's guys, but food is something of an issue. Let's just say I never intended to raise my kid on mac and cheese, chicken nuggets, and hot dogs, but we seem to eat an awful lot of them around here. And I should have bought stock in Pepperidge Farm. At any rate, adding a new food is big news around here.

The food is fried clams.

No idea why. I mean, I like fried clams. I like steamers, too, come to think of it. But of all the strange-texture, weirdo-foods to suddenly decide to eat... fried clams? What gives? But I'll take it. New food!!! Schwan's makes lovely fried clams that you actually can bake in the oven. WE also invest in Schwan's hot dogs, they are better than ANYTHING you can get in a grocery (a LOT less greasy). We don't have a Schwan delivery person in town, but they do stop at Mom's, so every other week I'm on the phone now... "Yes, Mom, we need a box of hot dogs, a box of quesadillas, a bag of potstickers..." and now I can add "and a box of clams!" (The quesadillas and the potstickers are for me. We haven't gotten the boys to brave those, yet).

Woo-hoo!!! What a week I'm having! May everyone have weeks like this!!!

What Joey Did Today

We had a teaching moment today. Joey has been running out of doors, and today he managed to unlock Grandma's door and run outside. Fortunately, Grandma lives in the middle of nowhere, but in the house I grew up in, so he couldn't get too lost, even if he ran REALLY FAST- but he just wanted to go open and close the car doors. While he was wandering about, though, he managed to pull on Grandma's calla lily, and break it off. I found him slamming a car door with the stalk in his hand.

I managed to remain calm. After all, its just a plant, not a disaster, but I expressed my displeasure and dismay in the situation, and explained that he would have to go inside and explain to Grandma what he had done. Grandma made an excellent show of displeasure and disappointment, and we explained to him that breaking plants and touching other people's things and whatnot was wrong. We talked about the fact that Grandma had planted the plant, and was waiting all summer to see th eflower, and now she never would see it, because the plant was broken. We discussed the fact that when you break a plant, it dies, and can't flower or be green and pretty, but will instead get yellow and go away. We explained that saying sorry wasn't going to bring the plant back, and wasn't going to fix it, and that sorry meant that you wish you had not done something wrong. He seemed to get it- at least that we were upset, and he said he was "sorry about the plants." This was a pretty big jump, for him to at least connect the words to teh apology- he didn't just say "I'm sorry, Grandma" but "I'm sorry about the plants."

So, trying to pretend we weren't celebrating the advance in language use, we went home. There was more discussion about responsibility, and not switching to "Andy broke the plant", and how important it was for him to tell the truth and say that he broke the plant, and that sort of thing. He kept perseverating on the subject, so we kept working through it. Finally I got the music on (its also good not to dwell too long on such things, so that he will learn we still love him, and that no one is angry or upset forever), and we got home. Allan came down the stairs.

"Joey, tell Daddy what you did today," I said. I kept my tone even, because I didn't want to give him a huge prompt for what to say; we are tryign to teach him to self-narrate, and so far, we've washed out. Joey's usual response to this request, put in any fashion (What did you do today? How was school today? Where have you been this morning? Did you do anything fun today? etc) is to pretend we don't exist. Other requests, he'll at least turn his head or try to answer (even if the words that come out have nothing to do with what you asked), but this idea of constructing his own narrative completely shuts him down. Lately we've started to get some attempts at response, but mostly echoes and responses that have nothing to do with the past, with actions or activities, or anything vaguely resembling a response to the actual request. The closest we've been getting is "Joey's in the white car!" which is true, and kind of on topic, so we've been praising it.

"I went to see Grandma... " Joy! Jubiliation! Get out the champagne! Call the neighbors! Call Grandma! Chocolate and prize box for all! "...and I broke the plant. I'm sorry about the plant."

My son just told his father what he did today. He answered an open-ended question requesting narrative about past activities. He remembered he broke the plant, and told his father.

Holy frijoles!