I’ve seen a lot of celebrity endorsements for one or another approach at handling autism. Green our Vaccines, Autism Speaks, Rethinking Autism and varied groups or advocates all have their own approach. They all have one inherent flaw holding back their progress. They all speak as if their way is the way to handle all forms of autism. There is no blanket approach to handling autism. That will not work and causes unrest in the autism community.
The best example so far is the divided lines with the organization Autism Speaks. Supporters of Autism Speaks want to see a cure for autism and support all medical studies make that happen. High functioning autistics see this as a par-racial erradication of their kind. Both sides have valid arguments. A cure of some kind could make non-function or low function autistics function for the first time. A child who previously could only rock in a corner, may go out to play and say “I love you, Mommy”. So why is this fight unrealistic? First of all no one can force a cure of any kind on anyone and it will likely be very expensive. So far they agree, that autism is not curable. It’s not even certain that all forms of autism can be detected before birth. Even then, only the most severe will likely be detected and that would leave out high functioning forms. While we all have the right to be heard and have a say in what’s going on, paranoid fear serves nothing. We should all support the idea of having kids able to run and play. We should also support what has contributed to some of the greatest minds in history.
Another example is the campaign to Green our Vaccines. I agree with what they are trying to do and believe that there are ways to avoid pumping mercury into our babies. Once again, this will do nothing for those who have a form of autism right from birth, having nothing to do with a vaccine. Unfortunately the message is delivered in such a way that it looks like this is what they are claiming. While autism is what caused these celebrities to start endorsing, it’s not accurate. They are against vaccine poisoning and autism is just one result of that. Generation Rescue, who invented the “Green our Vaccines” slogan is heavily endorsed by Jenny McCarthy. In one media event I saw her exclaim on stage that “autism can be cured!” and such a broad statement is laden with error. Once again, it may be that some forms of autism can be reduced or avoided, but certainly not all. And it bears repeating, there is no cure for autism. To make such a claim is very irresponsible and gives false hopes to millions.
We need to remember that autism is different in every person and that there are five forms and multiple causes. We need to support each other and be more understanding to the broad scale of the autistic community.
If the interenet is an ocean, then we are all the fish. Who are the fishermen, the advertisers are. And we need to watch out for them.
Sadly, the internet is a jungle of corruption, scams, and outright lies. You can find anything you want on the internet, but it could cost you more than just a few dollars. I could cost you your identity, your financial future, and even your life. You are bombarded by ads everywhere you go, even where you are reading this. What's worse is that they will prey on your every indulgence and flaw.
Overweight? There are thousands of diets and miracle pills for you on the internet. Too bad not a single one will help you. They'll take your money and send you their product but you won't lose weight. That or you'll kill yourself by taking diet pills and not eating anymore. If they're lying, why are they so successful? Because they know you want it easy. You want to lose weight and not lift a finger to pull it off. So they have your miracle diets, miracle pills, colon cleansers, super nutritions and not a single one approved by the FDA. Not a single one with proven case trials or a track record of any kind. All you see is paid actors spouting about how their life changed. But there is no Easy Street in losing weight. The hard truth is this; quit inhaling food, get off your butt, and exercise somehow every day. Stop giving your money to the internet theives and take your health into your own hands. These are lies, these are scams, don't click on them.
Need money? Get yourself a grant or post links, or better yet go to loan sharks and owe forever. I have taken a good close look at several of these supposed miracle money makers and I find that, once again, there is no easy street. Don't you think it's interesting that the guy who wants to give you his big secret to get millions doesn't have millions himself? Oh he claims he does, but if that's true, it's because of you. Sure, he gets a thousand people to pay him fifty bucks for his "miracle information". He may not be a millionaire, but fifty grand is nothing to sneeze at. And that's just for one round of cheap advertising. And there isn't a goverment stockpile of money laying around in a garage just waiting for you to walk in with a bucket. It's a lie. Stop giving your money to the scam artists and put it to some real work for you somewhere. Like paying your mortgage. Once again the word easy pops out, it's a mythical fairy creature, it doesn't really exist. Don't click on them.
And those are just the two most popular. Hey, whiten your teeth, make spots disappear from your skin, be beautiful and while your at it become a werewolf or Santa Claus.
I've seen dozens of reports online from the authorities with FDA, FBI, BBB, and a bunch more, saying that "if it looks too good to be true, then it is too good to be true". Evidently, from what I have witnessed, this message is not enough. So let's get more blunt on it. See those little ads floating all around the things you are reading? DON'T CLICK ON THEM! And if you do, know this: there is no regulating authority making sure that all these scammers are legitimate. You click at your own risk with no possible recourse to save you. Your money will be gone, and you will have something for your dumpster to show for it.
So, that ad you were just glancing at? That miracle, easy, free for your money, secret? DON'T CLICK THAT!
My son has become a pocket gopher. I'm already wrought with worry because he's underweight and we need to get some pounds on him. He's not an overly picky eater, but he's developed a serious habit. He stores food in his cheeks and not just a little of it.
When his dish is empty he shows it to me with pride and I commend him. Then it's off to play. But not so fast. I have to make him sit back down and finish the bulging mouthful he has. On a couple of occasions I have found him playing with his toys 15-30 minutes later with a golf ball sized bulge on the side of his face. He never finished that last bite.
So what is he doing? Storing it as a snack for later? I asked him about this, curious to his logic. Well, asking him only upset him. He doesn't know why he does it, he just does it. He also doesn't like talking about how he feels. So all I can do really is just make him sit at the table until his mouth is as empty as his plate.
Past that, we may never know completely why our children on the autism spectrum do everything that they do. Most of it has to do with sensory of some type. Maybe it just feels good to have something stuffed in his cheek? Needless to say, our kids can come up with some strange habits. If you don't wind up scratching your head in wonder at some things your child does, well, you're likely not paying enough attention.
When you see that supposedly disobedient child in public, having a meltdown and you wonder about that behavior. You really should pause and consider the parent who sticks by that childs side. That's the parent who may have to leave a cart full of groceries because of an autistic meltdown. That's the parent who may have to full body hug their child on the spot to keep them from biting or hurting themselves or others in an outburst. They're the ones who have to put up with harsh public opinion when their hands are already full. In short, parents on the spectrum deserve a freaking medal.
It's not easy when your child can't concentrate enough to get dressed in the morning. He'll be starting to get his jammie shirt off when he erupts into this ear splitting "eeee" siren noise while shaking his head so hard you think he'll knock himself over. At the same time he'll whip his hands back and forth like he's trying to shake something off them at hypersonic speed. Being an autistic adult, this triggers my own sensory issues and I have to try and get him to stop. I say his name louder over his high droning sound and put my arms in the way of his superfast flapping. I distract him so I can bring him back to task of getting dressed. I will have to bring him back to task a number of times. I may even have to put his clothes in his hands while repeating myself over and over to put his shirt or pants on.
Often he will just get angry with me and we will have a short temper tantrum- mini meltdown that I have to "not" respond to. My refusal to engage in some of the behavior can also prompt him to get back to task and be back on course for the morning. Once he's dressed we can get to the next part of our morning. If you look through my blogs on my Myspace page you will find dozens of parents who can say they deal with exactly the same thing. I am certainly not alone in what I deal with. Some have to be dressed completely by parental hand so I count my lucky stars where I can.
This morning he considered breakfast more of a plaything as he smeared his scrambled eggs, spilled his milk and purposely dribbled from his mouth all over himself. Wild laughter ensues, much of it forced because he wants to hear his own voice. I clean up, correct him best I can and make him go without his milk to drink until his eggs are all eaten. I get another tantrum that I have to ignore and soon we are back on track again. Not every morning is this intense. Mornings with erratic behavior of this magnitude tell me it's time for a med check, but I still have to get him set up for the day before the phone calls can be made.
Next it's time to take daily meds and that is a new chore in and of itself. He hates his medicine, and what kid doesn't? We do our best to get it down, but he's in a devil of a mood and more dribbling ensues. A good morning sees meds down in about 3 minutes. Today it takes 15. And there's plenty of kids who have to be fed by hand on the spectrum because they just can't process the world around them.
People have commented to me on how much I can handle him since I have a condition myself. But they only see a fraction of our life in each others hands. They don't see our morning trials or the things we do together when he's able to go out and have fun. Then there are those who look at his odd behaviors when he is ON his meds and ask me how I do it. I bite my lip, I really do. I shrug and say that we just do the best we can. We have our routines and I work with him on proper social behavior. But it will take time. And I bite my lip because the person who asked me that is only seeing the lighter side of his eccentricities and already feel overwhelmed.
That's okay, because parents on the spectrum can't afford to get overwhelmed. We don't have that kind of time. We do what we do and we do it every day. On top of that, we love our kids and wouldn't trade them for the world. We don't write these blogs to say woe is me, we do it for those who just don't get it yet. I'm writing my blog for YOU, parent who doesn't have a special needs child. I want you to look at the next kid having a "fit" in the store and think of these words. And before you judge that parent, ask yourself what they already have to do for their child every single day. Then ask yourself if you could do it.
I consider our morning trials just part of life and we get through them and go on with our day. That's how parents on the spectrum are. It's just part of our lives and we deal with it. Just something to think about. You can search for me on myspace or facebook by my email, firstname.lastname@example.org. All are welcome there because you just might learn something new.
You are losing your home and your job is already gone. You're getting a divorce and all the foundations of security in your life are crumbling. You look at your kids and wonder what you are going to do for them. Uncertainty and chaos are the only things consistent now. So what will you do? Will you put that old Bobbie McFerren cd in the stereo and crank up "Don't worry, be happy"? There are some who may.
Some people rebound okay and start over, some don't. Some people cry out for help that they may or may not receive, and some just bottle it all in and try to tough it out. Both sides of those tactics have their pros and cons and some win, some lose. It's a dastardly world out there right now and no matter who or what we look to it all comes down to this, we must live.
So you hope the President fixes the economy and gets the working world back up and running again. You hope the factory might open its doors back up so everyone can go back to work. But then something else happens and the politicians don't deliver quite they way they said they would. Now what? Live in spite of them. You don't have to forgive them or even put up with them, just live on. Live in spite of what was taken from you. Live in spite of the failures of your government, what ever they may be.
Live in spite of losing your job, your spouse, or your house and car. That's not to belittle what you've been through, I've been there too. I'm just saying you still have to live. If not, all the thumps and lumps you've taken have won. So live, live in spite of it all. That's what we have to do. Stop letting your money troubles put holes in your heart. It's no where near what it used to be worth and they can only take so much away from you. You can find a better way, but no matter what you do, you must live.
What I'm talking about is an attitude that we all just need to develope. We're doing the best we can and we're taking care of our kids and families. Maybe we can't do it the way we wanted to now, but we can still live our lives. We can use this to teach our children and give them the backbone to live as well.
You see, I've decided that I no longer care about the politicians. My creditors, oh I'll pay them, but they can get in line while I fix life and take things one at a time. Yep, stuff em all, I'm going to fix my own life. No matter what they do, no matter where anyone goes, I can only go forward and so can you. Go forward, live in spite of them.
So a new school year begins and we find ourselves getting up early in the morning and scrambling to get all things ready. Or do we? Well, I get up fine in the morning, Denver on the other hand, not so well. Even though I started getting up earlier and waking him up, the routine isn’t fully instilled yet. So, it will take some more work. Our first item of business in the morning is to get dressed. I meet with some resistance here but I set a timer to challenge him. It’s worked once so far, but we’re only two days in right?
Next we need to get our breakfast. Denver get’s to pick what he wants for breakfast so long as he gets moving in the morning and doesn’t create a crunch for time. We have plenty of Cheerios and that’s the fall back. So if he wants something else, he gets up and gets moving.
The only major challenge we’ve had with getting the new school year started, I could have avoided if I thought about it. Shoes. Denver has been wearing sandals for most of the summer. That became his routine, much like not wearing a coat or jacket. So when I brought out his shoes, we had a near meltdown. Oops. I slowly explained between protests that we weren’t wearing sandals to school and it’s time for us to wear our shoes. That means no more sandals for me either, until after school. Offering him the chance to wear his sandals after school seemed to help the situation and we were rolling once again.
New classes and new teachers are always a possibility for angst with autistic students. Denver get’s full props. He met his new teacher with a smile and friendly talk. He tackled his first day with flying colors. But this was just the beginning and I felt pretty nervous. Is it just the parents that get really nervous about these things? Maybe I worry too much.
When the time came to pick my lil man up from school. I waited outside the class room for the bell to ring. When he came out, the report was of a good day. I asked him what he thought of his first day. He used the word awesome with major exclamation. So we are off to a fine start for the school year. He likes his class and he’s with kids he knows.
Denver has been through a lot of heavy duty changes for an autistic child, but at least this didn’t have to change. With the school year off to such a great start, I find myself looking forward to the rest. I hope it’s just as good for the rest of you.