Andy

In case you were wondering, yes, I do have a second child. Andy is a beautiful, normal 2-year-old. The difference between Andy and Joey is sometimes startling. Sometimes the similarities are startling. And sometimes I wonder if I am getting to enjoy Andy and his amazing growing up like I should, since I spend so much time with Joey.

Sometimes I wonder what other people dream of for their children. I have forgotten much of what I was hoping for when Joey was two. Was I dreaming of him growing up, falling in love, getting married, having a good job? Was I hoping for a good college, a nice car, maybe a little house where I could watch my grandchildren? I don't remember wanting these things, or even thinking about them. I think I was trying to imagine him in a preschool and playing T-ball, but I'm not sure now. Since most of the parents I know are also "special ed", its hard to say what “normal” parents want for their kids.

And yet, though I am a “special ed” mom, I’m also a “normal” mom. I’m going to get to negotiate the world from both ends. Yet I’m not sure what I want for Andy is what other parents want. I am want him to feel loved and know I am so proud of him, even if I am spending more time working with Joey. I am him to know he is so special, too. I don’t want his primary self-image to be one of Brother of an Autistic Person, or Special Ed Sibling. I want him to have his own world and his own world view, and not be swallowed by Joey’s disability. I want his role as Joey’s brother to be like any other brother.

What do normal parents dream of and hope for?

Nothing like the sound of a scream in the morning

One of the problems with living with an autistic child is you get a lot of screaming. When Joey gets frustrated with me not understanding him, he screams right in my face. As in, he gets as close as he possibly can to my face, and screams with all the power in his lungs. It was old the first time it happened. Its a daily occurance, because Joey's handle on language is shaky at best. Sometimes it makes me mad- more because I know he's getting frustrated than at the screaming itself. Sometimes I get angry at the screaming itself. Sometimes I get angry because if he could just calm down for a second, I could take care of the problem. But usually I get upset because its just one of those reminders that not only is Joey disabled, but that disability is making him suffer- he WANTS to do teh right thing. He WANTS to understand. He just can't, and its frustrating him to teh point of screaming!

I don't think I know anyone who hasn't been frustrated to teh point of wanting to scream now and again. But every day? Can you even imagine feeling that way EVERY DAY, often several times a day, ALL the time?

Weekends

Well, Memorial Day has come and gone again. I've been married nine years. And it was a lovely, hot weekend. We took the boys to a picnic that my boss invited us to. taking Joey into new situations is always a fun challenge. This time, he ended up in the neighbors' yards, once just to defeat the locked gate (he was successful) and once because the neighbor had cool toys outside (he wanted to ride on a ride-on shaped like a bike- they were very nice people, and let him play with it for a few minutes before we dragged him back to the party, where he promptly melted down.) I know some folks think we shouldn't take Joey to new places and picnics and stuff. Certainly the other party guests were dubious. I still can't figure out how they expect him to learn how to deal with social situations without ever experiencing them.

Monday we just put both of them diaper-free in the back yard and hosed them down all afternoon. Then Joey got the hose, and hosed ME down. Then Andy grabbed a pitcher and started throwing water on me... It was HYSTERICAL. Two little boys with that twinkle in their eyes... "Let's get mom!"

MMR

One of my acquaintences sends me regular articles on research being done about autism. Most of it pertains to the thimerasol problem, but today's is about the MMR vaccine. Apparently, some autistic children "with bowel disorders" get the virus used in the vaccine stuck in their intestine. The conclusion is that this may cause autism, because they are looking at children who appeared to be developingnormally up to 12-18 months, when the vaccine is given.

Ok, I'll take the possibility, but there are logical problems with the brief report. For one, there is nothing about non-autistic children with bowel disorders- do they get this vaccine stuck in their intestines? Are bowel disorders- or the bowel disorders they are noting- exclusive to autistic children? If they are, then couldn't the disorder being causing the autism? What about children who were not developing normally before 12-18 months? Had you asked me if Joey was normal when he was 18 months old, I might have said yes; but now viewing our home movies, the autism seems pretty obvious to me. What is causing the autism of kids who are autistic before they get the shot? Could those children considered to have "regressive autism" actually have just gone undetected, and the autism just started to become more obvious at this age, when the problems of autism start coming into play, because you start expecting things like communication, increased fine motor and gross motor skills, and increased socialization (and these things just don't happen, or start happening in abnormal ways)?

The other conclusion is that this supports a "causal link" between MMR and "painful gut disorders" in autistic children. This is more logical, and yet still correllational, not causal. Did those disorders exist before the shot, causing the virus to build up? Does the virus cause painful effects of any kind? These things aren't really addressed. Does it cause problems in non-autistic children with these "gut disorders"?

As someone still searching for the "why?", these types of reports aren't giving me any answers. I hope they are giving SOMEONE answers, because then we can do something for other kids who may really be being impacted by vaccines, but my kid wasn't. Is there anyone out there looking for the answer to our "why?"

Persistant Speech

One of the joys of Joey is he has "persistant speech"- this is a form of echolalia where he repeats phrases over and over and over and over and over and over... and it takes some getting used to. In fact, it grates on nerves even when you know its coming. Its a greaqt reminder not to cuss in front of him- because you'll likely hear it coming back at you again... and again... and again... and again...

The phrase of the hour right as I am writing this is "oops! derailed!" He heard this watching the DVD we made of the beach trip. Its actually not as annoying as phrases he repeats when he's upset. Sometimes you just wish he wouldn't scream "Joey, NO!" over and over again after trying something dangerous. I feel bad enough about having to raise my voice, having it echoed ad nauseum certainly doesn't help my nerves. Then there's "take it easy, Joey!" At least that one I feel like he's trying to calm himself down.

There must be some way to break him out of the downward spiral of persistant speech, but I haven't found it. Anything I do just makes it worse, and increases the volume. Yeeks!

Normal problems

When your life is whirlwind, sometimes its nice to realize that a little breeze is a normal thing. Sometimes I'm thankful for wierd things, I guess. I often think how lucky I am to have my Joey and my Andy. They are both little sweethearts, with big blue eyes and hugs to share. Sometimes I think how lucky we are with Joey. For all the problems and storms we are living through, Joey is really not too bad off. He's got a real shot at living a normal life in the long run (provided I do the needful now). So many of the other kids in Joey's school won't have that chance. But most often, I am hit with the realization that a problem I am having with Joey is a normal problem- a problem any parent would have, and I find myself grateful for it- for the problem. A normal problem means a normal kid. The more normal problems I have, the better.

So many of Joey's problems are automatically attributed to his disability. Granted, his disability often exacerbates an otherwise normal problem. He melts down faster, he had some sensory issues, but by and large, I feel like many of Joey's specialists and teachers either forget he is disabled, or the over-atrribute to disability. Joey is four years old. Normal four year olds don't like bedtime. They dislike broccoli. They don't want to leave Chuck E. Cheese's. They want the same story read over and over. They want to watch TV all afternoon. These are normal problems. Hallelujah, my child is four! Most four year olds need transition cues. Joey may need more than other kids, but needing cues is normal. Most four-year-olds have foods they dislike, Joey just has more than usual- but wanting to eat M&C every night for a week is a normal toddler/preschooler behavior.

So I often try to keep in mind what Joey's teacher told me last year: it really doesn't matter what's normal and what's the autism, as long as we teach Joey was is appropriate and what is not. Inappropriate behaviors need to go away, even if they are normal for his age; appropriate behaviors need to be encouraged, no matter his disability.

Things that make life good (Part One)

Joey's face just above mine, saying "Good Morning, Momma!"
Boy trains
Trying to find something under the sofa, and suddenly having a boy on your back.
Two little guys in a kissy mood.
Click, clack, moo...
The soft squeak of a floorboard around 6:30 am, and you know it isn't the cat coming to see if you are awake yet.
Whaaaaa... Da!
Two giggles from the top of the stairs.
Placing a bowl of Carl's ice cream into expectant fingers.
Boy hog
Waltzing Mathilda... Wheels on the Bus... One, Two, Buckle My Shoe... Garden, Garden, G-G-G...
Get the Kitty!
Little fingers trying to tickle me
Little head against my knees, lounging on the couch to the sights and sounds of the beach
Counting to 29.
Two boys leaping from the couch to the floor pillows
J-O-E-Y
Sometimes it looked like a... but it wasn't a...
It's an owl
Two boys bouncing to the door when Daddy comes home

Bedtime and Showers

This week Joey is insisting on not sleeping until it is dark outside, and having me stay with him until he falls asleep. Having me stay with him is a phase he slides in and out of; in a couple of weeks, he'll complain about me staying. The light thing is a little more worrisome. Summer is a long few months of waiting until 9 to be able to clean, work with my students, or take a shower.

Showers are one thing that has become a trade-able commodity in our household. There is little chance of getting one while Joey is awake, because he needs to be constantly supervised now that he can get out of his child-safe room. However, now that he is up constantly from 6 am to 9 pm, that doesn't leave much time for both a shower and sleeping. At least Andy still naps. But getting in showers this summer should be very interesting- there are only so many hours in a day. Sleep is another one of those valuable commodities, but I have insomnia on my side. However, if I don't get some sleep, its very hard to deal with Joey screaming the next day... and poor Andy! He's VERY two. That takes some patience to deal with, too. Plus, he imitates his brother- in fact, I often now have to go look to see who is raising the ruckus.

The fun part of all this is that I get to snuggle Joey to sleep. Allan gets to snuggle Andy to sleep (and Andy is now in his Big Bed, and very happy about it, which helps, too). Tonight we sang some songs together (would I have guess a year ago that my Joey would be singing songs now?) after reading some stories, and he settled himself and got to sleep. What a cutie. We're SO lucky that he likes being hugged and squished. I can't imagine the nightmare of having a child who didn't like being touched. Joey is into the hugging. I should probably get him a weighted vest when he gets a little older, but for now, I can hug him, and his teachers can hug him, and he really feels so much better.

Upcoming Class Visit

Last year, Joey's preschool teacher was all about parents and siblings coming in and participating. This year, our teacher was exactly the opposite- she actively excluded us from Joey's school life. Now she's gone to have her baby, and the sub is letting em come to see Joey! I am SO EXCITED! Christina is going to watch Andy, and I'll get to see what Joey can do! He always does so much more at school than he will do for me at home. I can hardly wait!

Pinky Dinky Doo

If you have a child having trouble with narrative and sequence, allow me to recommend a TV show... "Pinky Dinky Doo."

Its not what is sounds like. Allan and I were definitely skeptical when we saw the ads for it, but since it talked about telling stories, we decided to give it a watch and see if it would be useful. It's really a cute show, and includes some games about narrrative elements and sequence, some subtle positive messages about health and food choices, vocabulary, and everyday social situations. We were so pleased, we let Joey watch it, and he LOVES it! He's picked right up on the little games, especially the sequence ones.

A year ago, we were please to hear words coming from his mouth. Six months ago, he called me "momma" for the first time. Now he's starting to learn narrative- one of the great hurdles of language and communication. Woo-hoo!

The Today Show

This morning the Today Show had a segment on an autistic child- more of an update on a child they've been reporting on. The child gets ABA, speech therapy, occupational therapy, special ed preschool, and about an hour a day in a regular preschool- he seemed to have a paraprofessional with him.

Its was a good segment, better than the normal "what is autism?" segments you see, because it shows these kids respond to therapies, and presented the therapies that were working for the child. It also did not even try to answer the question of cause, which I found very nice.

The fact that our school system does not have paraprofessionals for their inclusion classrooms is very disturbing. This leaves it up to each parent to request one for their child's IEP. Requesting anything for an IEP means going to war with the school- at least it always has before. Its a divide-and-conquer way of throwing away lives, and the casualities are not only our own self-worth and time, but more importantly, our children. Not just the disabled children.

Thimerasol Fascists

OK, this is my peeve of the day: thimerasol fascists.

When one is dealing with other parents of children with autism, you find a large pool of people who are depressed, in shock, in disbelief, scared, worried, exhausted (both physically and emotionally), angry (or as my son would insist, "furious"), and generally in not good shape. And those are the folks who have been dealing with this for a while- the people who are just getting into this with this diagnosis are in worse shape. You end up meeting a lot of people who insist that what happened to their child and what works for their child is what happened to and will work for your child. Unfortunately, some of these things are not useful for Joey, would be dangerous, or are simply bogus in the first place.

I can understand wanting to DO SOMETHING. That is one of my mechanisms for coping, too. When the doctors are telling you to try medicines, diets, shots, exercises, therapies... you try them. I can also understand wanting to share strategies that work for your child with other parents. That's very kind and helpful, and a compassion for other people. But I do not understand people who not only insist you do what they do, or believe what they believe, or experience what they experience, but get downright ugly about it when you don't.

The worst of these for today are the thimerasol fascists. These are the people who believe that thimerasol is to blame for autism. Thimerasol is a preservative that is/was used in vaccinations, and it contains a type of mercury that drug companies insist is harmless (as opposed to the kind that makes you Mad as a Hatter). Personally, I think anyone who thinks putting mercury into a child's system is a good idea is just plain nuts. Even if is was safe to do, most folks don't know there are different kinds of mercury, and the perception of danger alone would be enough for me to question its use. However, I seriously doubt it is safe. It is still used for flu vaccinations.

However, I knew thimerasol was bad news when I was pregnant. Joey has never had any. NEVER. NONE. He never had a flu shot, because he's allergic to eggs. My doctor and I discussed the problem and she had stopped using vaccines with thimerasol in them before Joey was born. Thimerasol did not cause Joey's autism.

Thimerasol fascists don't seem to care about Joey's lack of exposure. To them, thimerasol is the problem, the rest of us be damned. I'm not saying thimerasol isn't a problem. I'm not saying that mercury exposure is not a cause of autism. I'm not saying there doesn't need to be a push to end its use. I'm just saying it isn't the only cause. We need to look at all the causes of autism, all the strategies for treating it, and do what needs to be done for our children- ALL of our children. Research needs to explore not only thimerasol and mercury poisoning, but other possibilities- genetic problems, other environmental factors, even possible causes during pregnancy.


Thimerasol fascists are closely following on my peeve list with Diet Fascists (who insist that ALL autistic children need to gluten and casein free), ABA Fascists (and Joey gets ABA therapy, so I know it works for us- but for everyone? I'm not convinced), and Medicine Fascists (sorry, Joey is not on any medications for his autism. He doesn't need any.). If these things work for you, then fabulous! I'm glad for you! But getting nasty when I say Joey is not in 40 hours of ABA therapy per week, eats bread and cheese, and doesn't take any medicines is really not necessary. Honestly. He's my kid, and I'll do what works for HIM.

Another day, another sleepless night.

I have a horrible habit f wakin gup about one in the morning with the realization that no one is going to help Joey. The school personnel couldn't care less- in fact, they seem to be actively trying to deny Joey services that everyone else says he needs. I hired some private therapists, but they seem more interested in their paperwork than in tailoring a program from Joey's training and education. I am not a trained speech or occupational therapist or special educator.

When I was in India, I had an IndRail pass. There was extensive flooding in an area I was scheduled to visit. I went to the train office to change my reservation, and the people there told me incedulously that since I had an IndRail pass, I could get on and off the train at will, what was I bothering them for? Just tell the conductor I wanted to stay on the train, no problem. They refused to change my reservation. When I did as I had benn told and mentioned to the conductor that I wanted to remain on the train past my reservation stop, I was told this was impossible, I *had* to get off the train, IndRail pass or no. In the end, after being nice, being polite, being firm, being slightly sharp, I finally had to scream, cry and stomp my feet for them to do what I was told was not only the possible, but the only option. I find throwing a fit to be rude, dehumanizing, undignified, and embarrassing. However, getting off teh train at my original stop was putting my life- and the lives of my traveling companions- at great risk. I did what was needful, and will never forget. Was the conductor to blame, or the people in the train office? The attitude at the train office seemed to be that why should they work when I, as a westerner, could scream and yell at teh conductor to get what I wanted? But to me, forcing me to scream and yell is the ultimate insult. It shows clear disrespect not only for me, but for that train conductor, who was doing his job; the train office people had the power to change the reservation and avoid the problem, and chose not to.

School personnel are like train office people in India. They only do what you scream, stomp, cry, and yell for. They complain about parents not coming for meetings, but considering the abuse *I* get at IEP meetings, I can't say I blame other parents for saving their sanity and not wasting their time on them. I came to teh last meeting with a letter from Joey's doctor, the latest research on autism, and an analysis of Joey previous educational experience, as well as the extra training in autism and strategies for autism provided by teh department of education. All of these were promptly dismissed as "not individualized." Excuse me? Is my doctor not an appropriate expert on my child? Is my only real option to put my child in a specialized, private school? There is something inherently wrong with a special education system that has no intention of providing students with the same opportunity at independent living that is provided to "normal" students. The goal of special education here seems to be to keep kids- especially high-functioning ones- in special education.

So I lay awake at night realizing this time next year, I will be stomping my feet, losing sleep, and spending whole days in tears over the definition of "Least Restrictive Environment" and the fact that the school would rather my child rot in a ditch than provide his teacher with a paraprofessional (to the lay world, an aide) to help him/her teach Joey the basics of kindergarden curriculum. Joey's problem is not socialization- he LOVES other kids and WANTS to play and please his teachers- his problem is communication. Its a gap that could well be bridged with the simple addition of a paraprofessional to the classroom, so that Joey's communication problem do not interfere with the education and experience of non-disableed children in his classroom. In fact, such a paraprofessional would be good for everyone in the classroom- they help the teacher, not the individual student. But I want Joey;s teacher to have one, I will probably have to hire a lawyer. I'm sorry, that's just wrong. I need that money to provide Joey with extra therapies at home, so that he won't have to be in special education forever. I do my part. Why can't the school do theirs?

Buses

One good thing about Joey is that he loves school... but even more than that, he loves the bus. When he got on the bus for the first time- can it be a whole year and a half ago?- he looked SO little. Moms of 2 1/2 year olds shouldn't have to be putting their children on large yellow school buses. We followed the bus all the way to school, and took photos of him getting off. I miss our preschool teacher. The lady we have here now is not very friendly, and because I have Andy, she actively excludes us from Joey's life. Last year, our teacher actively INCLUDED us- Andy and all. After all, Andy is part of Joey's life everywhere, not just at home. Joey also loves Andy SO much. He's loved Andy ever since the moment he beeped the baby's nose in the hospital- love at first beep.

Anyway, Joey loves buses. He has a little one he carries around with him. He has several matchbox sized ones, and those are OK; and he has an FP one, and that's cool, because it sings, but then there is Bus. Joey has been known to sleep with Bus, takes Bus on adventures, and always feels better when he has Bus in hand. Right now he is leaning his head against my side, watching his Blue's Clues, clutching Bus. Yes, even in our lives, there are moments of normalcy. :)

Andy has figureed out the word bus, too. He loves to point to all sorts of buses, and yell "BUS!" But for Joey, there is really only one Bus. And it's yellow.

What's in a word

I will never forget the day the word "autism" became part of my life.

I was sitting in a small, windowless room, trying to keep my three-month-old baby from crying by rocking his stroller, watching my two-year-old baby not react to anything the speech pathologist was doing. He had picked up a small car that she had gotten out of a little showbox, and nothing she did could detract him from it. She rang a bell behind her back- no reaction. She asked him questions. Nothing. She asked him to feed a bear, play with another toy, hand her an object. Nothing.

The adventure had actually begin two months before my second son was born. Joey had been quite the star at each of his check-ups; every milestone the doctor had asked about had been acheieved with flying colors. He always smiled, laughed, and seemed to be a happy kid, sitting on the examination table or opening all the cabinets and slamming them closed. His two-year appointment was markedly different. For one, Joey had taken to being fascinated with the edges of things, and wandered about the room with his eyes less than an inch from the edges of the countertops and windowsills. But all kids have eccentricities, right? Then came the big question: was he talking?

Joey never spoke. Before you launch into your favorite my-cousin's-best-friend's-first-child-didn't-talk-until-he-was-four story, unless that child had a serious speech problem, it isn't the same thing. Most kids who speak late say things like "mama" and "dada". They point to objects they want. They pull on your pantleg and let you know they want a cookie. If they are hungry or thirsty, they let you know its time to eat. They wave bye-bye. Joey did not do any of these things. He was just as happy to shop all afternoon, even if lunch was late. He had never pointed to anything in his life. If he was unhappy (especially if we were encouraging him to speak for a treat or redirecting him from an activity), he would prostrate himself on the floor in a howling tantrum we called the "I'm Not Worthy". If you waved at him, he looked at you like you were nuts. This child did not just "not speak"- he did not communicate.

However, he was clearly a happy, affectionate little guy. He would hug and kiss me if I asked him to. He made facial expressions, he laughed, he threw his toys around. He wasn't doing things like jumping, but kids develop at different rates, so there was no real alarm. The doctor told us to see if the birth of the baby would have any effect- perhaps having a need for attention would spur him into speaking.

At the baby's six-week check-up, things were not just not better, but they seemed to be getting oddly worse. He was still a happy little guy, but a quieter little guy who smiled less. He still loved edges, spinning balls (which he did himself), and slamming doors. We decided we needed some help- we were obviously spoiling him, and we could use some pointers for how to get him talking. Off to the speech pathologist!

Which brings us back to me rocking a stroller, watching my son ignore said speech pathologist. She looked up at me.

"I don't know you," she explained with an odd look on her face that made me uncomfortable. "How blunt do you want me to be?"
"You might as well be blunt," I had responded, as if the words were coming from somehwere about four inches behind my head. She thought for just a moment. That pause marked a change in my life, in my sons' lives, in our whole future. It was the calm before the storm.
There were other words that emerged from her lips, but the ones I will always remember were: "Your son is either profundly deaf, or profoundly autistic."


I am an educated person, In fact, I have two master's degrees and a PhD. When I got pregnant, it was done with careful planning and education; my husband and I read books about child development, child psychology, parenting, and pregnancy. We took courses on breastfeeding, first aid, and parenting. We made the choice to have children; an educated, informed choice. We even knew there would be a second child, because the research we knew indicated that having a second child was a benefit to both children.

Nowhere in anything we read, any class we took, any website we examined, had we come across autism as any more than a passing possibility. We knew enough about it to ask our doctor about Joey's vaccinations and thimerasol, but that was about it. It was a word that was relegated to the shadows of statistical improbability. We had no family history of problems. Joey had no thimerasol shots. He head grew normally. He was happy and affectionate. There were no red flags for us, until the flag was slapped in my face on August 31, 2004.

So this blog is about living with autism. My Joey is not just an autistic child; autism is a fact of our entire family. It pervades our lives in a way that can only be compared to the way having a child in and of itself pervades your life. Its like the toys that lay scattered not just in the bedrooms, but also in my livingroom, my kitchen, my diningroom, my bathrooms, and even what was once our basement recroom (and is now Joey's therapy room). Even our front porch, back deck, and yard have the presence of toys. Trying to put them away is useless; I might be able to fool someone for an afternoon that I don't have small children, but why would I? Even when everything is put away, you turn around and step on a matchbox car. They live here.