Shut Up About Autism

The funny things...

2010-01-31T11:19:00.002-06:00

When you're going through it, it is most definitely not funny but later on some things will strike you as amusing. For instance:

the dozen eggs you had to clean up off the kitchen floor because one of your kids is extremely into visual stimming and also likes the little crashing sound they make when they hit the floor (nothing like egg white to bring out the gloss of vinyl);

baby powder all over everything, but it was a proud moment seeing that he wrote his name in the white dust, correctly and legibly;

dishwashing liquid all over the kitchen, a word of caution on this--it makes the floor very slippery;

If you're lucky enough to have a child who smiles, laughs, or shows affection in any way, cherish it. A lot of children with autism cannot do these things.

We've got one who's hooked on all things Charlie Brown. He can frequently be heard saying "Rats!" "Good grief!" and "I can't stand it." He also likes to throw in things like "No. Try again." when he doesn't like the options we've given him.

Another good example of fun with early verbalization is our six year old when he's told "first school, then computer." His response is almost always "all done school please." Have to admire his thinking there. The same boy will go to his visual schedule (if he doesn't like what's on it) and remove all of the icons. Hey, it's better than him throwing a tantrum.

In reality we're very lucky with our boys. It's just that the bad days are so very bad that we sometimes forget how easy we have it compared to others. Having our neuro-typical 2 year old around highlights the differences very well in terms of the boys' development, but we constantly see signs of how intelligent our boys are (in some ways that makes them more challenging because they tend to outsmart us).

I'm going to try to post more often. This will most likely mean short posts, but I hope they'll be meaningful.

Thanks for reading.

Memory loss and other surprises.

2009-10-10T14:38:00.003-05:00

Last time I was here I read through my previous posts and found that I've mentioned the Mr. Bingley thing more than twice. My apologies. This not getting enough sleep/rest/relaxation thing does catch up with you. But, on to more important things...

I thought my oldest (the one with Asperger's) would hold the record for earliest school suspension. Yet this week has was surpassed. I now of have the singular distinction of having had a child suspended from Kindergarten. It was a whopping half-day sentence.

See, we're still having trouble with this darling boy and aggression. It's not even always a temper issue. Sometimes he's overstimulated. Sometimes he just gets the idea to reach out and smack someone. Being an exremely outgoing child, he usually is around other people when this type of thing occurs. Thus someone gets hurt. This week he actually hit another child. I'm vaguely aware of the circumstances. It was out on the playground during recess.

That night he flipped out for a while and it took two therapists and his father to control him.

The next day the school was determined to keep him at least through swimming in the afternoon. But the phone rang at 10:30 am and they asked us to pick him up. Didn't want to go in from recess (normally gives them no trouble over this) and started attacking the aides.

There's an IEP and re-eval coming up on Thursday and we're all wearing out our thinking caps trying to figure out why this is going on and how best to handle it.

He was in Early Childhood for three years. That was half days, four days a week, at a different school. And there were nowhere near as many demands. Could be related to the big changes in his school setting.

We've had new therapists within the last few months. Could be related to that.

Could be he's just testing everyone.

We're discussing using different PECS symbols, shortening his school day, increasing the emphasis on speech therapy, shortening or eliminating his recess time, changing the time he gets his medication. I'm sure there are other ideas floating around but I'm too exhausted to think of the at the moment. Shame I can't get a nap.

If anyone out there on the 'net has some other ideas as to cause or strategies for dealing with this, please let me know.

Mr. Bingley

2009-07-04T01:14:00.002-05:00

For anyone who is not familiar with Jane Austen's Pride & Prejudice, Mr. Bingley is a very genial gentleman who is friendly and obliging, full of good humor, and just an all around nice guy. The kind of guy anyone would be pleased to call their friend.

I had a Mr. Bingley in my life not long ago. He was my baby. I'm not being cutesy. I'm talking about my youngest son. He's a natural redhead who was born almost perpetually cheerful. Smiling and affectionate. He loved to snuggle and give lots of hugs. Laughing was his favorite sport.

Then the autism kicked in.

My sweet baby boy is now somewhat violent. His rages and irregular sleep patterns are very discouraging. I'm typing at almost 1:30 AM because he woke up at midnight. Rather than let him go downstairs and watch a movie like he wanted, I decided to try to get him to stay upstairs and go back to sleep. It didn't work. And I got injured...again. Not a major issue, but I don't much care for it when he draws blood.

He's mastered the art of the full hand pinch, which almost always leaves a bruise on my arm. I've gotten much better at avoiding those pinches but once in a while he still gets me. When his fingernails get ahead of me (and please raise your hand if you know an austistic child who likes having their nails clipped and cooperates fully with the process) he scratches and digs into people's flesh. That's where the blood comes in. Of course he doesn't always draw blood. He doesn't even always break the skin. But it does hurt even when the crescent shaped indentations fade within a day.

In theory, he will get through this phase...eventually. Oddly enough I'm not even feeling all that discouraged at the moment. I have times when I want to break down and cry because my Mr. Bingley (and yes, I did actually call him that) is now a raging ball of Temper Tantrum Turtle, but I know he's still in there somewhere--I get glimpses of him from time to time. He just kissed the "owie" he gave me.

By the way, we're downstairs and he has a movie in, but he's asking for "uh-stairs pease." Maybe he's decided to go back to bed. If not, I may actually get to work on my writing for a while. No time like the middle of the night when the house is quiet to get creative.

Thanks for reading. Stay tuned.

Progress can suck!

2009-06-17T14:01:00.003-05:00

As our five year old acquires more language, he becomes increasingly more frustrated because the words aren't coming fast enough. Since he is around 2 1/2 to 3 years of age developmentally, this frustration manifests itself in acting out physically: pinching; scratching; kicking; hitting; biting; throwing; you name it, he's done it.

As luck would have it, our five year old is an equal opportunity injurer (did I just invent a word?). He'll attack me, his father, any of the therapists, sometimes his brothers. Only once has he hurt his sister.

He's already on medication to help reduce stimming so that he can learn more easily, and it's working. This kid loves to read and he's really good at it! But we're wondering if there's anything else we can do aside from applying bandages and ice when needed and waiting until things get better.

So for once, I'm asking for help from the blogosphere. If anyone out there has some tips for protecting little ones (and adults) from autistic rages, please post them.

Thanks for reading.

How to Stay Sane

2009-05-08T11:35:00.003-05:00

At the moment I'm not entirely certain it's actually possible, but here are a few tips. Some of them might even work.

1) It is tempting to disappear into the world of autism. Don't do it. By all means research, advocate, and never give up on getting your child the treatment he or she needs, but you need to have a life outside of autism.

2) Be selfish once in a while without feeling guilty about it. Parents of special needs children (particularly mothers) tend to put themselves on the back burner and sacrifice everything for their child. Bottom line: if you get completely depleted you are no help to your son or daughter. Find something that helps you recharge and engage in that activity from time to time.

3) If people offer to help, accept! If they are vague about it, nail them! Ask what specifically they would be willing to do. If possible create an entire roster of people on whom you can call for help when it's needed. The more people on your list, the greater the chances that at least one person is sitting around with nothing to do and would be happy to come over. (admittedly this one is very hard, it's tough to find people these days who aren't scheduled up to their ears)

4) Fight against isolation. This is another toughy, as sometimes the isolation is unavoidable and it feels that way even when it's self-imposed. Invite people over. Somebody's bound to show up and if you're lucky your child(ren) will behave better when company is present (if only because a change to the routine shocks him/her into being quieter than normal).

Hopefully I will get into this in greater detaiul at some point, and include specific things that I find helpful. Right now it's lunchtime and my darling NT is getting fussy. Plus the five year old got into the baby powder again so I need to find another hiding pot for it. On the plus side: the house smells really nice now.

Lousy Day

2009-05-02T19:05:00.004-05:00

You know those days where you can't shake your headache and the kids are not remotely interested in cooperating? I'm having one of those.

I've got one kid in particular who is about three handfuls today. He's five years old and loves being outside. He also loves being shoeless. I'm not even counting how many pairs of socks he goes through in a weekend. He throws dirt. Isn't that wonderful? It's a stim. He likes to watch it fall.

He hasn't yet worked through the tantrums. We're getting tired of being injured by our son. He pinches with his whole hand and he's very strong. Lately he's decided head-butting is a good tactic too. Before you ask, no he doesn't watch wrestling or violent movies. He doesn't watch Saturday morning cartoons either, and we didn't teach him this stuff. He's not nearly as bad with the therapists as he is with us.

Ah the joys of verbal emergence! Chief of which seems to be the frustration that not every word is emerging right now.

Now the tantrums are not always about not getting the words. In fact he's less likely to freak out over not knowing how to communicate than he is to do so when he just can't have his way. This is not a spoiled child. He just doesn't understand concepts like "we'll buy more tomorrow" or "no more." Ok, maybe he does understand, but he refuses to accept such things.

This is the child who was so sweet I used to call him Mr. Bingley. (note: if you don't get the reference, please see Pride and Prejudice) He's is still very loving...when he's in a good mood. He hasn't been in a good mood for days.

This is also the child who will sometimes, for no apparent reason, wake up at 3 AM and stay up until bedtime that night. It's not consistent, which means it drives me slightly further up the wall. If he did it every night I would at least know to expect it (not that I would appreciate the situation).

My Aspie is making elaborate plans and building things. He used an LED light to create a really cool hanging lamp in one of his cardboard box movie set things.

The middle boy hasn't been much trouble today, except for going outside without his pants, socks, or shoes. He had his Pull-Ups on.

In the midst of this our darling little NT is edging toward terrible twos, and asserting her independence as much as possible. It's a big job keeping her safe from her big brothers. They would not deliberately hurt her, but they don't know their own (considerable) strength.

Weekends are always difficult. The weekdays we have school and therapists to help us out.

One of my goals for myself this year is to get back to work on my novels. Yes, I'm a writer. Or I was a few years ago. Lately the only writing I do is emails, filling out forms, or infrequent blog posts.

I'm so tired! I'm counting the minutes 'til bedtime. Of course the sleep I get doesn't refresh me much. I wake up with tense muscles. I've given up trying to rest during the day because as soon as I lie down somebody needs something.

Sadly my train of thought seems to have run out of fuel, so I'll end by thanking my reader. Thank you, reader!

The Good, the Bad, and the Annoying

2009-04-11T19:14:00.002-05:00

One of the things that fits all three of the above is the fact that because of stalling-out and/or going backwards developmentally, autistic children stay our babies for longer. Of course they're much bigger babies, which causes plenty of problems.

My boys have not gotten to the "it's not cool to love Mom" phase. They are still my babies in a lot of ways, not just because they still have potty issues. On the other hand, my boys are big for their ages too. So imagine a five year old who looks more like a seven year old, having the tantrum of a three year old. Not so fun there.

I got kicked today when my youngest son couldn't understand why he couldn't have the toys that the kids next door were using. Got scratched too, but the kick hurt more. And this is actually progress. I'm not getting nasty bruises anymore.

His next oldest brother is having trouble with a computer game that's just slightly too difficult for him. So now we have to decide whether or not it's better to just remove the game for a while. But at least he's not adamantly opposed to the dog anymore.

Meanwhile my Aspie is still talking about going back to his old school (the one he went to before we bought a house and moved). He now admits to having a few friends at the new school, but he still maintains that he hates it. He's too far ahead of himself, has very little patience, and limited impulse control.

The baby may be the only normal person in the house. By baby I mean 18 months. She's a lot of fun. Very different from her brothers. Don't know whether that's because she's NT or because she's a girl. She's rapidly edging into tantrum territory.

It will be an interesting year. Stay tuned for more random thoughts and info.

The Vaccine debate continued...

2009-04-05T20:33:00.002-05:00

My apologies for the interruption. Life with three kids on the spectrum is never dull.

As I was saying: Vaccines do not cause autism; they accelerate it.

It's my belief that autism is a natural, underlying, auto-immune/neurological condition that can be accelerated beyond it's normal progression by any number of factors.

So let's say we've got a baby with no autism indicators. But there is something wrong with the child's immune system--not dangerously wrong; it's just a little off. Maybe the kid is a little sick. Then we inject a virus. Any virus--take your pick. A depressed or already busy immune system isn't likely to deal with the new threat with 100% efficiency.

Now think about the fact that in the US babies and toddlers are routinely given multiple virus shots per visit to the doctor. And if a child is behind on shots, some doctors will try to play catch-up and give the kid whatever he/she should have had already according to the lastest recommendations.

Let's think about this for a minute...if you went to the doctor and he said he had to give you several vaccines through, oh, three or four injections, would you go along with it?

I don't know about you, but I never let my babies get four shots at once. I don't even let them have live virus vaccines before the age of three. Did me a lot of good, huh?

Back to the point. A while later the same kid develops autism. Did the vaccines trigger it? Maybe, maybe not. How do we find out? Well we can't unless we can identify the subtypes. After that we can find out what triggers each one and hopefully develop screening techniques to determine which children are at risk for which type of autism.

At that point we can develop appropriate health care plans tailored to each child's needs. One size fits all medicine is about as effective as one size fits all education. Everyone is different.

Vaccines are only one factor. There are so many other things we need to look at. How many children have been given Tylenol for every fever or ache in the last two generations? How many Baby Boomers were exposed to DDT because of efforts to curb mosquito populations? Look at the way electronic devices have infiltrated our lives--the body has a highly electric component and interference is a known issue with electronics.

Now for the big question...why are people on the anti-Jenny McCarthy side so adamant that vaccines couldn't possibly be a factor? One word: lawsuits. Our society has become so litigation-happy that if there is ever a proven link someone will file suit (some have already) and then Big Pharma will lose a lot of money. That means the cost of medicine goes up, which means the cost of all healthcare goes up. Not really in anybody's best interest.

If every family-member of every autistic child in this country signed a petition that they would not sue based on the findings, maybe we'd get more research into this issue. But it's not likely that petition will ever exist.

Before I go, let me leave you with another thought. The big objection to the vaccines is based on Thimerasol (I'm aware I probably spelled that wrong, it's late and I'm tired, deal with it), which contains mercury. The thought is that mercury poisoning can cause or trigger autism. Here's another spin on it: pregnant women are warned not to eat a lot of seafood, especially that which is known to contain high levels of mercury (swordfish etc..). Personally, I don't like fish. I'll eat tuna now and then, but I can't stand the taste of fish, or the smell either. So I barely had any fish at all during pregnancies. And maybe that was a problem. If children aren't exposed to microscopic levels of mercury in-utero and their immune systems have no experience with it at birth, would that put them at higher risk for reactions to shots containing even trace amounts of mercury?

Think about it. Why do we give vaccines in the first place? To train the body to fight off certain threats. I'm not saying that T-cells are great military strategists, but it's more difficult to defeat an enemy when you have no knowledge of how they work.

Vaccines and Autism: the great debate.

2009-04-05T14:54:00.002-05:00

See, told you I'd cover this. There's a lot of flap going around on this subject.

Militant parents claiming their kids were normal until they got their vaccines (sometimes a certain vaccine, sometimes not).

Militant big bad pharmaceutical companies, the American Academy of Pediatrics, and others calling Jenny McCarthy an idiot (one of the nicer things that's been said about her).

Here's my 2 cents* worth (*adjusted for inflation it's really more like 85 cents):

Vaccines do not cause Autism; they accelerate it

Sadly I can't explain why this is cause my autistic kids are bouncing off the walls and their father can't handle them. I'll be back later...

April is Autism Awareness Month!

2009-04-01T21:33:00.002-05:00

Or as I call it at my house: Wednesday.

I'm very much aware of Autism all the time. I don't need a specific month to think about it. My three sons on the spectrum constantly remind me.

When I started this blog I really did mean to post more often, however things have gotten busy lately.

I'm happy to report that my seven year old is getting more verbal. Sadly he's also getting more physically aggresive, and he seems to be afraid of our puppy (no idea why, he's always loved dogs).

My nine year old Aspie actually wants to go to summer school this year. I should point out that this is not remedial classes, it's educational stuff to keep kids busy for a few weeks during the break.

In my next post I plan to start talking about that biggest of controversies...vaccines. But my kids have Spring Break starting Friday, and I seem to be coming down with a cold, so I can't promise when that post will be. Hopefully soon. I wouldn't want to disappoint my reader.

Dude, what's with the name?

2009-01-29T10:24:00.002-06:00

I wanted maximum attention-getting status. My goal is to attract readers on all different sides of the controversies surrounding Autism causation, diagnosis, and treatment.

I'm not really telling anyone to shut up. Dialogue is good. But if anyone wants to be disrespectful, they can go elsewhere. This blog is dedicated to progress, not ridicule.

Shut Up About Autism will foster positive and constructive communication. Why? Because I said so. I am a mother of Autistic children. I don't fall in line with anyone's views. I have my own. My views may even coincide with someone else's, but rest assured that would be entirely unintentional.

Things you won't find here:

1) Woe-is-me, depressive, there's-no-hope-attitude.
2) Pointless bickering.
3) Mean people (they might show up, but they won't stick around)

Things you will find here:

1) Balanced, rational approaches that might annoy you, regardless of your opinions
2) True stories about living with Autistic children
3) Humor
4) Cautious optimism

If all of those sounds good, stick around. If not, thanks for stopping by.

Warning this blog is: not to be read by narrow-minded individuals who think they are open-minded; written by a semi-professional smart alec; not endorsed by ANYONE, ANYWHERE; capable of causing random bouts of laughter, tears, anger, and/or inspiration (other, unknown side effects may also occur). Do not read if you are suffering from: Absent heart syndrome; I-can't-find-that-in-a-book-itis; But-I heard... disease; or similar afflictions. Do not try this at home. If at any point during reading, the words become fuzzy and/or indistinct, leave your computer immediately and seek the advice of a vision specialist. Author of blog not responsible for muscles strained by laughing uncontrollably or throwing things at your monitor.