Don’t Dose Your Kid With Bleach

I never thought I’d have to say this, but please, don’t put bleach inside your kid in any way shape or form.  Even if someone with credentials a mile long tells you it’s a good thing, don’t do it.  Don’t give it to him/her orally or in any other manner, including via their bottom.  Bleach does not cure autism.  It can, however, kill your child.

Every couple of months the autism message boards light up with a new cure or treatment.  In the last few years I’ve seen plenty – various diets, supplements, oxygen therapy, brain stimulation, bath additives, injections, vitamins, stem cell therapy, herbs, neurofeedback and more.  Some of them benefit our kids; some of them don’t.  Some of them hurt our kids and a few can kill them.  The problem for parents is figuring out which is which.

As a parent of a child with autism, I understand our need to do whatever possible to make our children’s lives easier.  If I could trade my arms and legs in exchange for my child to have the ability to live independently, safely and happily as an adult, I’d do it in a heartbeat.  There’s nothing I want more than for all my children to become fully functioning and to have great lives long after I’m gone.  My biggest fear is that I will die before they are able to care for themselves.  I desperately want a cure for the bad parts of autism.  Unfortunately, that makes me a sitting duck.

Any time, any place where people suffer, someone will be selling a way to make the suffering go away.  Sometimes the sellers are really trying to help people; sometimes they’re just trying to make a buck.  And sometimes they are intentionally triggering every emotional response they can from people so they can drain them of every possible dollar, with absolutely no regard for the effectiveness or safety of the product they’re selling.  They use every hard-sell technique they can think of, mining our dreams and fears to promote their bat-sweat-monkey-spit cure.  They paint a picture of our child, free from the negative aspects of autism: a loving, caring child, who has friends, good grades, is healthy and who loves us very much.  What parent wouldn’t want that?  They promise us that future, as long as we are smart enough to see that their treatment is the right choice, even if other “experts” denounce it; as long as we have faith; if we care enough about our child to do what it takes to make him well; and as long as we pay and keep paying.  They play our heartstrings to get to our pockets, and if our children suffer in the process, so be it.  As long as they are getting rich, they don’t care.

Yeah, there’s a special place in hell for people like that.

I am in no way saying that every treatment that parents talk about on the internet is snake oil and I’m not suggesting that any of our parents are intentionally disregarding our children’s safety.  There is a lot of helpful treatment advice we give each other.  Most of our doctors and other practitioners are honestly trying to help our kids.  But when we go looking for ways to help our children, we can’t forget that among the thousands and millions of people out there who wish nothing but the best for us, there are a few evil ones who are just looking to line their pockets.

When it comes to our children’s health, we have to be defensive.  If something about a product, therapy or treatment raises red flags in your mind, do some more investigation before deciding to use it on your child.  Your research may ultimately convince you to try the treatment, and that’s fine.  But take the time to check facts.  A really skilled salesperson can calm quite a few of our fears, but here are some situations that really ought to make us suspicious:

  • A treatment that looks fabulous but that few people know about.  If the treatment is so effective, why isn’t it more popular?
  • The treatment is only available as a limited time offer or from only one or two sources.
  • The treatment is really expensive and insurance has investigated it and won’t cover it.
  • The reason everyone doesn’t know about the treatment is because there’s a conspiracy.
  • The studies that prove the treatment’s effectiveness were done by people who will benefit if you buy the product.
  • Government agencies or medical associations have published reports that say the treatment is hazardous.
  • The seller is claiming the product will cure many unrelated conditions, (like cancer, autism, heart difficulties, migraines and autoimmune diseases.)  The body is very complex and few disorders have the same root cause.
  • The seller is pressuring you to buy their product.
  • If one of the main selling points is “it’s all natural.”  Opium, digitalis, strychnine, uranium and thousands of other substances are all natural but can still kill you.  Natural doesn’t equal safe. 
  • You can’t find any research (other than what the seller provides) that says the product is safe and effective.
  • Your pharmacist says it’s a bad idea or hasn’t heard of it.
  • The seller claims there are a lot of benefits to the product but no adverse side effects.  If something is potent enough a treatment to affect the body, it will almost always cause side effects.  They may not be harmful or serious, but they’ll exist.
  • The seller doesn’t provide a way to tell if the treatment isn’t working, for instance, “If you don’t see results in six weeks, stop treatment.”  No product or treatment is 100% effective for everyone using it.
  • If “the science hasn’t caught up with us yet.”  If science hasn’t proven the product is safe and effective, maybe you should wait until it does.  If the treatment is effective, it will still be effective in a few years when it’s proven.  Do you really want your child used as a guinea pig?
  • The seller claims that if you don’t see results from the treatment, you should increase the amount or frequency of it.
  • It is making your kid more sick.  Some effective treatments do have side effects but as a general rule, if your child is getting worse – stop using the treatment.  If you have to taper off, fine, but stop.

These are just a few situations that should make you concerned.  Again, they don’t necessarily mean the treatment is dangerous or ineffective, but they should make you evaluate it very carefully before you start using it on your child. 

Listen to your gut and do your research.  We are all human and we’re all fallible.  We will make mistakes and sadly, some of those mistakes will harm our children.  We have to carefully weigh the possible benefits and harm in every decision we make, and sometimes we’re going to blow it.  I hate that.  I really, really hate that.  The best we can do is to be as careful as we can when making those decisions, and when we do blow it, forgive ourselves and get back to focusing on helping our children. 

As for the bleach cure, it’s called “Miracle Mineral Solution” or “MMS” and when it’s used as directed it produces an industrial strength bleach inside the body.  The people selling it use dubious claims and twist science to make it seem like it cures all kinds of things, including autism.  The FDA has a different opinion:  FDA Warns Consumers of Serious Harm from Drinking Miracle Mineral Solution (MMS).  You can decide who you want to believe.  Choose carefully.

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The Weirdest Kid in the Room

Imagine you are a child and you’re a bit different from your classmates.  You’re not sure why you’re different or how you’re different, but you know you are.  Things everyone else finds easy to do, you don’t.  The teacher reads a story to the class – it’s about a cow who wants to jump over the moon, so she tries and tries and tries until finally she can.  The teacher asks you what the author’s message is.  You say, “That the cow was stupid.  Everyone knows cows aren’t strong enough to propel themselves outside our atmosphere and all the way to the moon.  Besides, the cow would suffocate with no oxygen.  People think that if you go into space without a spacesuit you would implode or freeze to death, but actually the water evaporates from your body and your blood starts to boil.  It’s from the absence of air pressure.”  Some of the other kids laugh at you and the teacher gives you this really funny look.  She says, “No, honey.  The author was trying to tell us that if you can’t do something, you should keep trying.”  You hear one of your classmates whisper to a friend, “He’s so weird.”

Now repeat this scenario and other similar situations, over and over, for your entire school career.  Add to it the fact that you can’t run well, or throw or catch a ball.  No matter what you wear, the other kids say you dress like a dork.  When they tell a joke, you don’t get it and when you try to act the way they do, they laugh at you.  Some of the kids are nice, but no one ever asks you to come over to their house or go to a party.  Your mom quit inviting your classmates to your birthday parties because none of them ever came.  Imagine always being the weirdest kid in the class.

That’s what it can be like for our mainstreamed children.

Mainstreaming is when students with special needs are included in the general education classroom – special ed kids attending a regular class with typical kids.  Depending on the child’s needs and their parents’ desires, the student may be mainstreamed all day or part of the day.  He or she may study their core academics in a special education classroom and take the rest of their subjects in general ed, or maybe it’s the reverse for our kids who are high academically but benefit from spending part of their day in a less stressful environment.  However it’s arranged, the goal of mainstreaming our kids is to not only give them the same educational opportunities as the rest of the students, but to also have them spend as much time as possible around typical students to improve their social skills.  The thinking is that it’s hard to learn the same social skills as typical kids if you spend most of your time around non-typical children.

Mainstreaming is fantastic.  If done properly, it works and our kids benefit.  There are pitfalls we need to avoid when constructing a mainstreaming program; specifically those of delusional thinking (“If I put my kid in with the normal kids, all the normalness will rub off on him and he’ll no longer be autistic.”), archaic viewpoints (“A special ed kid in my classroom for gifted kids?  I don’t think so.”), and misplaced enthusiasm (“I want my child completely totally mainstreamed.  It’s his right, even if I am pulling him out of a specialized math class that teaches him at his academic level to put him in a class that’s working several years ahead of him.  The school can just work it out.”)  As long as we keep a realistic view of our children’s needs, abilities and goals, mainstreaming can work wonderfully.  However, even great mainstreaming programs have a flaw built into them.

I’m not talking about the fact that although most typical kids are wonderful, there are a few of them we definitely do not want our kids to mimic.  You know the ones – the obnoxious little brats you’d like to hang up by their ears but can’t because it’s illegal for adults to assault kids just because they’re toads, no matter what they said to your sweet little darling.  Nope.  Though having to deal with rotten kids is a flaw, that’s not it.  In fact, for the sake of this discussion, let’s take those kids completely out of the equation.  Let’s assume that all the school’s anti-bullying education and policies work completely and totally.  All bullies and bully-type behavior is removed from our mainstreamed child’s school day.  This is fantasy, la-la thinking, I know.  Unfortunately we can’t change human nature that much.  The schools are doing a great job, but no matter what they do, they won’t ever be able to completely erase obnoxious behavior.  But for now, let’s ignore that facet of childhood.  Even without bully behavior, mainstreaming our autistic children still has its downside.

The fact of the matter is, no matter how well we design our autistic child’s educational program, during the time he or she is in the general ed classroom, they will be the weirdest kid in the room.  The lag in their social skill development guarantees it.  Even if all the other kids and the teachers don’t point it out or make a big deal about it, those of our kids who are more self-aware notice it.  They may not be able to say exactly what is going on, but they do know that they’re always the last one picked at PE.  They know that the other kids understand things that they don’t – like how to join a game on the playground, what’s cool and what’s not, and all that girl/boy interaction stuff.  They get that they’re different and that there are a lot of things that their peers are better at than they are, things that they really don’t understand at all.  They see the difference and they look for an explanation.  Unfortunately the one they often come up with is that they are stupid or weird.

So, what’s the solution?  Mainstreaming has a lot of benefits that we don’t want to lose.  Cloistering our kids in the special ed classroom (if that’s not where they need to be) is not the answer.  We can’t keep them hidden away just in order to promote their feelings of self-worth.  We need to put them out in the real world so they learn how to function there.  So how do we do that without having them end up thinking they’re defective?

We can’t change the fact that they are different from their peers, nor should we deny it or put too much emphasis on it.  Their differences exist and that’s it.  There can’t be any drama from us about it to our kids.  No wailing or gnashing of the teeth or laying blame on anyone.  Their autism is just a fact of life.  If we are accepting and low-key about their differences, then we help them along their path of accepting who they are.  

What we can do is try put some balance into our child’s perceptions.  He or she spends the majority of their waking hours in school, so it takes on an importance in their life that is out of perspective.  The social interactions of their school day make up an unusually large part of their social world.  After school, typical kids often hang out with friends or get involved with activities like scouting or sports or music lessons.  But a lot of autistic children don’t.  They may not have any friends and are often too worn out from school and homework to participate in group activities.  While typical children get to spend time in an environment they’ve chosen where they are socially successful and that validates their worth, our kids get to struggle through homework and listen to their parents tell them what they did wrong in school that day and what they need to do differently tomorrow.

So as parents, we need to work extra hard to make sure our kids have opportunities to do things that build their sense of self-worth, like having friends, succeeding at goals, skill building and having people value what they do.

How do we do this?  That’s a big topic, one that’s too big for this already too long blog post.  So I’m only going to outline a few ideas here.  Rest assured, we will revisit this topic in the future, but for now, here’s a quickie snapshot.

The building friendship part isn’t always as hard as we make it.  Yes, we’ve got to do the “have cool toys and fun parties, etc” thing so kids want to come to our house and hang out with our kids.  But we also have to try to attract kids who our child will enjoy.  A lot of parents I talk to say, “I keep inviting his classmates over, but it doesn’t work out.”  They invite their child’s typical classmates over, the same kids who don’t work out as friends at school, and try it again at their home.  Guess what?  Generally, it still doesn’t work. 

Instead, try finding kids who are similar to your child and/or enjoy the same things he does.  (Just like you find friends who are similar to you and like the same things you do.)   Someone who he can relax around, have fun with and practice the social skills you keep trying to teach him.  (A quick way to find other kids your child might like is to ask your child’s teacher for some recommendations, in her classroom and in others – including the special ed room.  She may know of someone whose mother is also looking for play dates.) 

And when you do get them together to hang out, make sure they have something to do that they will both like.  Don’t make the success of the afternoon rest on your child’s sparkling conversation, ability to figure out what his guest would like to do, and him actually spending time doing it.  If you think they may not be able to come up with something themselves, try to have some ideas in your pocket – at least for their first get-together.  For instance, if your child likes to draw and his guest likes Pokemon, maybe they can design and draw Pokemon together.  If your kid enjoys Legos and his guest is into dinosaurs, maybe they can build dinosaurs.  See what you can come up with.  Also, recognize that their idea of a good time and yours might be completely different.  They might be perfectly happy being in the same room together, doing completely different things and not talking to each other.  If at the end of the day, they both enjoyed themselves and would like to do it again, it was a successful play date.

You can also help your child get involved in an outside activity where he gets to do something he’s good at and likes.  Community groups based on something he’s interested in, like model train clubs, science fiction book clubs or astronomy clubs are good.  Classes where our kids learn a cool skill are great for giving them something tangible about themselves they can feel proud about.  Groups who do community service are also a great bet for our kids.  They’re always looking for volunteers and they often offer opportunities to learn something new.  If your child learns to knit so she can make scarves for the homeless, not only has she learned a skill, she can also be proud that she helped other people.     

The bottom line is that our mainstreamed kids are different than their classmates.  If we’re not careful, our children can grow up thinking they’re weird or defective.  As parents, we need to make a concerted effort to keep their self-worth intact.  We won’t always be successful, but helping them make one or two connections, finding someplace where they’re valued, can make a heck of a difference in their lives.

This is an important topic and we’re going to keep exploring it in future posts.  Until then, let me know some of the ways that you’ve helped your kids maintain their self-esteem.  I’d love to hear them.

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Melty Brain Soup

I don’t know about you, but this is the time of year when I start feeling mild despair.  It’s the middle of summer vacation for us and I really am enjoying having my teens around the house.  They’re great kids and they’re fun people, and I know one of these days in my not so distant future I’ll be sad because they’ll have moved out of our house and started their adult lives.  So I really am treasuring one of these last few summers I have with them.  That being said, they’re driving me nuts.

I guess my kids aren’t acting any differently than they do the rest of the year.  It’s just that the rest of the year they’re at school, driving their teachers crazy instead of me.  Apparently their teachers have a lot more tolerance than I do, as my kids don’t come home from school every day with lumps on their head.  By this time of the summer I’ve had several weeks of around the clock quality time with my children and as a result I’m seriously starting to doubt my abilities as a parent. 

I mean really, how hard is it to teach a kid to not leave their shoes in the middle of the floor?  Or to put their dishes in the sink?  Or to not leave empty soda cans in the bathroom?  (I’m leaving the discussion of how the soda can got into the bathroom in the first place for another day.)  I know one of my kids has high functioning autism, one has ADD, and the other is a major Geek and therefore mentally spends half the time on another planet.  (You know, a really cool planet where age old questions are finally answered, like who would win in a showdown: Granny Weatherwax, Batman or Q from Star Trek.)  I know I need to make some allowances.  However, it crosses my mind that if they are all capable of learning algebra then they ought to be able to keep the toilet paper holders filled.  So, it must be me, right?  Whatever I’m doing to teach them how to get along in this world, it isn’t working.  Shame on me.

But then I had a revelation.  I was standing in line at a store and I overheard a conversation between the two ladies in front of me.

“He always forgets to put on deodorant so I thought the smell coming out of his bedroom was him.  But it wasn’t.  There was a half-eaten sandwich on his desk.  It was green and had hair growing out of it!”

“That’s disgusting!  That’s almost as bad as what happened to a friend of mine.  She kept cleaning her kids’ bathroom but couldn’t get the smell out.  It took her weeks to figure out her pre-school boy was peeing into the heater vent.”

(I am not making this up.  Really.)

As the ladies continued talking, the light bulb went off in my head.  My kids aren’t dim and I’m not a terrible mother.  It’s just that they’re like all other kids – they’ve got melty brains.  Yup.  That’s the technical term – melty brains.

Neurologists talk about brain plasticity.  That’s the ability of our brains to change structure to allow the formation of new memories.  When we learn something, our brains rewire themselves slightly to store the new information.  That happens to us all.  But kids have it harder; their bodies are still growing.  They’re like this ginormous construction project that’s always active.  (Okay – we’re back to me talking here, not the neurologists.)  A new bit of information comes in and the brain gets busy trying to rewire itself and blammo – it gets hit with a wave of hormones.  Just as it clears the decks to get back to work, it discovers all its construction materials have been hijacked to add a couple of inches to the leg bones.  It gets more supplies, then a member of the opposite sex walks by and everything shuts down again.  By then the new memory has evaporated and the brain has forgotten it was doing anything in the first place.  See?  Brains plus childhood equals soup.  Melty brain soup.

I’m not saying that kids can’t learn anything and I’m not ducking my job of teaching mine to be decent human beings.  Nor am I relieving my children of their responsibilities to act civilized.  But I am going to quit questioning my parenting skills just because my kids are acting like typical teenagers.  Sometimes we parents of special needs kids are too quick to attribute our kids’ failings to their disabilities or our parenting techniques.  We need to remember that some childhood struggles are just part of the developmental learning curve.

For instance – pre-teens who don’t bathe enough to combat their newly developing stinky sweat glands.  Totally normal – ask any 6th grade teacher, especially once the weather warms up.

Having to teach your kids that washing their hair doesn’t mean just swishing a little shampoo around the top of their heads, that they have to actually scrub every inch of their scalps, even the part around their ears.  Normal.

Teaching them that if you ask them to take two garbage cans apiece out to the curb for pick up that you don’t mean two random cans; you mean two cans with garbage in them and not any empty ones.  Normal.

When you ask them to do something and they look at you and say okay, then when you get mad ten minutes later because they didn’t do it, for them to say “But you never told me to.”  Normal.

When you ask your kid why he did something and he says, “I don’t know.”  He really doesn’t and it’s absolutely normal.  Maddening, but normal.  It’s melty brain.

Your next question is, “Okay, so it’s normal.  What do I do about it?”  The answer is, nothing that you probably aren’t already doing.  You can’t hurry childhood development.  You can teach your kids some coping skills – write check lists, have them repeat instructions, explain the goal of what they’re doing (for instance, the goal of vacuuming is to get up all the little bits of stuff on the carpet, not to just go around the room a few times so you can say you vacuumed.)  You can also put things in place to make life easier when they blow it, like keep basic grooming supplies in the car (so when you’re half-way to school and you ask them if they remembered to use deodorant and they give you this blank look, they don’t end up walking around stinking all day.)

But more or less, you just have to wait it out.  Kids do eventually outgrow melty brain.  Ask parents whose kids are 25 years old or older.  Almost all of them are doing fine.  Ask those parents if when their kids were little, they ever thought they’d make it.  Some of them will say yes right away, but most of them will think about it a bit and let out a great big sigh.  Raising kids wasn’t easy then and it isn’t easy now, with or without autism.  Teaching them life skills is like dripping water on a pile of rocks in order to create the Grand Canyon.  It works, but it takes an awfully long time.

So have patience, with yourself and with them.  Enjoy your children’s good qualities.  When melty brain shows up, don’t let it drive you crazy.  Try not to criticize too much.  Help them fix whatever needs fixing and get on with life.  They’re all little ding-a-lings at this age, so we might as well enjoy the lunacy.

Besides, pretty soon school will start again.  My kids’ teachers may or may not be any better than I am at getting my kids’ brain cells to all line up, but that’s not the point.  The point is – they’ll be the ones doing it, not me.  Yay, public education!

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