When It’s Best to Not Speak Up

By on August 4, 2010 in Autism

I tend to have regular periods of down time, that is… feeling really defeated, really overwhelmed… like a total and complete failure. Actually, I feel like that all the time but sometimes it really drags me down more so than others. The struggle I have at these times is whether or not to reach out for support or words of encouragement or just keep it to myself.

Most of the time, like 99% of the time, there are no words of encouragement that will get me out of it… pretty much, I just have to ride it out until one day I wake up and the feeling isn’t so bad.  Still, I tend to keep hitting facebook or twitter or anywhere and everywhere with some rather negative and depressing messages because there is simply nothing else that I can write.

The end result is that a few times a day, I end up typing out something that I really want to hit enter on but never actually do. People are going to ignore it anyway, or not know what to say or in those rare times, actually say something nice to me and I’ll dismiss it anyhow.

The point I’m getting at is, in the Autism community online, we are all there to support and motivate and share stories… we’re also there to help pick each other up when we’re feeling down but sometimes, when you are just going through a rough patch, it’s best to just keep those sites closed, or keep the keyboard away from yourself.

I could go into a bunch of ‘techniques’ to perk yourself back up, such as getting out of the house, indulging yourself in something you enjoy, what ever… but it’s so much more simple than that. If you know that you may wake up feeling better tomorrow or one day soon, then just don’t speak up until then.

People won’t forget about you, people won’t have lost interest in you… there’s no harm in taking a breather even at the best of times, so don’t feel bad taking a breather at the worst of times too.

Now, that’s not to say that when times are truly difficult that you can’t feel terrible and reach out for support and help… that’s different. I’m just talking about the low patches we all get at random times when we just feel defeated and your only intention is to share negativity with others.

There’s an old expression: “Don’t drag everyone else down with you”. It’s a very difficult urge to resist but sometimes just knowing you resisted that urge is enough to help you feel a little bit better about yourself and thus, break out of that funk.

I have a lot of experience with this, I get into those ‘moods’ a lot. If you don’t see any updates from me for a few days, chances are, that’s why. I’m just taking a breather, I’ll always be back.

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A Challenge to Tony Robbins: Get Involved in The Autism Community

By on July 31, 2010 in Autism

Yes you’re a great motivator and the inspiration guru to the stars, but I’d like to see you step up to a truly great challenge and get involved in the Autism community.

Let’s face it, motivating people that seek you out (so there’s already something there that they’re just waiting to hear) and are readily able to pay for the tickets to your show, or ebooks or premium services on your site or what ever else… that’s all well and good… but it’s not a real challenge for a man like Tony Robbins.

I want to see you walk into a house and prevent something like this from happening: Murder Suicide Involving Mom and Son with Autism

I’d like to see you contend with children that won’t look you in the eye, that won’t answer your questions, that throw a tantrum at the drop of a hat… I want to see you talk to the parents that give up their cable, telephone and other luxury expenses to be able to afford their child’s diet and therapy sessions and try to motivate them.

Mr Tony Robbins, I really do like your work, honestly I do… it has no effect on me and I don’t feel inspired in the slightest however, but that’s not your fault… it’s mine. I know that I’m not the only one though, I know that there are many of us that know that our children will never be able to attend your seminars because they would never be able to handle being in a crowded room of screaming people with lights, sound systems and everything else. I know that many of us would never be able to afford the tickets anyhow.

I also know that it’s not a good business decision for you to get involved in the Autism community because no one makes money helping people that have no money. It’s good for public image but between you and I, I know you don’t need much help with that anyhow.

All the same though, I’d still love to see you get involved. I’d still love to see moms and dads and lonely people with Autism brought back from the brink and helped out by those who have the ability to do so.. you are one such man.

We don’t need a spokesman, we don’t need a celebrity to bring awareness, we need honest to goodness support and compassion… quite simply, we need help.

We’re the Autism community, we support each other and try to pass along words of encouragement knowing no one can see our tears while we sit at our computer keyboard…  but if that news story and the dozens like them are any indication, we’re just not strong enough. There’s too much to live with, too much to deal with and, because this is our children we’re talking about, there’s too much at stake.

You talk about challenges during your seminars, well… I’m putting this one out to you, because I respect you and I think (in the extremely unlikely event that you should ever even read this) that if anyone could say the words necessary to stop news stories like that from becoming more frequent… it’s you.

What do you say?

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School, Camps, Programs, Therapies… Remember to Take a Break!!

By on July 29, 2010 in Autism

Parents can easily become overwhelmed having to deal with all that entails a child’s schedule… there’s school, extra curricular activities after, there’s camps, programs, summer get aways and if your child has Autism, then there’s also therapy sessions, other camps, group sessions and so much more.

Wait, the parents can be overwhelmed? Just imagine how the children must feel!

Naturally, not all children are created equal and so many will be just fine with all that there is to do.. after all, children don’t seem to run out of energy like adults do. They just move from one thing to the next and keep right on going.

This generally isn’t how it is for children with Autism though, at least not in my experience. All of these things are really great and essential to treating the Autism within your child, to helping them over come it and break through. However, when my son gets home from school on a Friday afternoon, you can visibly see the tension that has built up from a solid week of it.

When you start to add up the school days, the friends visiting, the therapy sessions, the camps, groups… without down time, your child might get progressively more and more overwhelmed and possibly even regress. That means that all that you accomplished with the school and therapies and such would be for nothing.

One of the things that bugged my wife and I early on was how other parents kept pushing “me time” on us, telling us how great it’ll be when the kids are in school or day care or off to a baby sitter… it’s not the notion that bugs us but how much people seem to think that it should be done to excess.

It’s as if people are eager to “pawn off” their children at the first available opportunity so that they can have someone else “deal with them.” This does not go over well with me nor my wife because we’ve come to realize that the more family time we can get, the better our Autistic son does.

That’s not to say that one extreme is better than the other… we can’t keep him from every therapy session, never let him go to school and never socialize and hope he’ll be ok… we just have to recognize when it’s been too long and step back and maybe go to the beach or something.

Family time, it’s not something to be feared! It’s also not something to be scheduled for that one 2 week period that you get vacation time. There are evenings and week-ends you know! Don’t be afraid of your kids, do stuff!

The moral of the story is, too much of anything is not a good thing.. unless it’s love, of course. Your children can’t spend all their time away just as they can’t spend all of their time with you.

If your child is in school, camps, summer programs and more and you find there is no break, or if you find that your child is not only benefiting less but even regressing to a point… there’s no harm in taking a break and just being a family. They won’t “lose what they’ve learned” nor will they “miss out” on anything they could have learned.

Your child needs that security, that love and that comfort that only you can provide. Don’t deprive them of that in your search to get them “back to normal.”

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The Two Videos That Will Change The Way You Look At Autism Forever

By on July 27, 2010 in Autism

Today’s been quite the day for revelations for me… it happens rather often when you become a parent of a child with Autism, learning new stuff all along the way. It happened when I saw the Temple Grandin movie and it happened again today when I watched not one, but 2 videos.

These two videos are rather similar yet depict 2 different people… both of them, women with Autism that are unable to speak. They’re not 4 or 5 either, one is an adult and the other is a teen. They both display the normal severe Autistic traits such as arm flapping, screaming, fits of rage, repetitive motions and so forth and both of them are truly brilliant.

Both of these women found their ‘voices’ when they discovered computer programs that would speak for them when they typed and they typed real thoughts, real feelings, real expressions and do so remarkably well… better than most people I know in fact.

What you will see is an example of what you and I perceive, their Autistic traits and then, if you have the patience to continue watching the videos, you will then see them explain exactly what you were actually seeing.. what was happening in their mind, what was happening to make them do what they do.

And hopefully, like myself, you’ll have a revelation… you see, like most everyone else, I thought that severe Autistics were “trapped in their own world” or unable to cope…  mostly, unable to communicate.

But having seen these videos, I don’t think those things anymore. Well, watch the videos and hopefully you’ll see what I mean.

Carly’s Voice

In My Language

I would love to hear from you, how did these affect you? Has this changed your perspective? Does it give you (more) hope that there’s brilliance “trapped” inside someone you love with Autism?

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Their Routine Becomes Your Routine, Their Diet Becomes Your Diet, Their Life Becomes Your Life. Welcome To Life With A Child With Autism

By on July 26, 2010 in Autism

It’s a bit of a long title but it gets the point across. When you have a child with Autism, you quickly find that certain diets will or won’t work, you quickly learn that having a stable routine is essential to not just getting things accomplished but for the sanity of your child and yourself. These things work best when you not only impose them on your newly diagnosed child but also when you work them into your own life and that of your whole family.

When you have a child with Autism, or any real disorder/disease/disability, you quickly find that your life changes so much more than what your family and friends teased you about when they bugged you about getting little sleep or dirty diapers. Your life quickly becomes a juggling act of research, cooking, time management, doctor, advocate, psychiatrist and so much more. You look back and think to yourself how all those family and friends really had no idea how good they had it!

If you’re a single parent having to deal with Autism, I truly feel for you because from where I sit, I don’t even know how it would be possible to manage it… so kudos to you for doing it!

My wife and I tag team it, that is to say that she does 90% and I do 10%… maybe I’m a bit unfair in being modest but it’s not far off, but even if 10% is all I could contribute, I know it’s an important 10%.

This is a short glimpse of how it is in my house, perhaps some of you can relate, perhaps some of you are looking forward to something similar, perhaps some of you are just interested.

If the day were to start at midnight, then I’d be the one on call, getting up with Cameron when he can’t sleep, or has nightmares or gets thirsty. Why does he get thirsty over night? Well, because he doesn’t eat… we’ll get to that later in the day though.

Then I get up at 5am on school days or 6am in the summer (because we let him stay up later in the summer) and handle the mornings with him. This means either scrambled eggs or bananas with peanut butter for breakfast, more soy milk to drink and we sit on the couch watching a movie while we struggle to wake up. We play and watch stuff and do stuff until 9am when my wife Natalie gets up and takes over.

See, Natalie has Fibromyalgia which means that she needs 2 things to function, sleep and exercise. So I handle the nights and mornings… and the fact that I work from home means that she can sleep until I start work since I have no commute or anything. However, this means I generally get no breaks between waking up early, doing stuff all morning and starting work.

So I work while Natalie deals with both boys all day, all the while cleaning, cooking, educating them when she can, taking them to the park or even shopping and more importantly, to Cameron’s therapy appointments.

You see, she doesn’t even drop off the boys anywhere, especially Cameron. She stays with him to ensure that the ‘experts’ don’t do anything that might cause our son to regress (because even they don’t know the cans and can’ts for all Autistic children until they get to know them) and she also soaks in all they teach, learning it all and bringing home reading material when ever she can.

Meals generally consist of what ever Cameron can eat which means rice, eggs, brown rice pasta, bananas, corn and peas… beyond that, there’s not too much. So we’ll usually be eating something that fits that. This means that we may have some meat and things extra that he doesn’t have but generally his diet dictates our diet.

Come supper time, I’m done work and we all sit down for a family dinner which is to say, 3 of us sit there while Cameron runs around the house playing and coming back for bites from time to time. If he’s overwhelmed or had a rough day, chances are he won’t even eat at all, much less come back for bites. If it’s not something he wants, he simply won’t eat. Again, our meal generally fits his diet. When all is done, either we play together for a bit or we all go to the beach where Natalie goes for a run around the lake and I take the boys swimming. Again, exercise is important for her and swimming is very beneficial for Cameron… and just plain fun for both boys.

From there we return home and I give the boys a bath… another downside to my wife’s Fibromyalgia is that she can’t be hunched over the tub or wrestling with wet boys all that well.

We enjoy another movie or tv program, some quiet time and then I put the boys to bed where I read them a story, get them a drink and tuck them in.

Then I go back to either watch a movie with Natalie for some much needed quiet time or, as most often happens, I sit down to do even more work. You see, the therapies and gluten free foods and trips to the city for things like test and such, they leave us living paycheck to paycheck, or worse in many cases… which means that I need to work that much more.

Also, my wife has even started working a little as well, doing some evenings and part time work here at home as well.

We’re both extremely lucky that we can work from home, because commute times would kill us, doing things separately/individually would kill us…. we wouldn’t be able to cope quite as well anyway.

Then around 11 or midnight, I’m back to bed to start it all over again. No days off, no day cares, no babysitters, no rests or breaks. It’s the routine, it’s the diet, it’s the life.

I kind of skimmed over my wife, Natalie’s, part but truly it is the 90% to my 10%…. she takes him to all of his appointments, she deals with all of his meltdowns through out the day, all his fighting with his little brother, does all the meal preparations which often includes 3 different types of meals from mushy processed slop for Cameron (to mix up and hide things such as meats in his meals) to solid pieces for my toddler who likes to use his fingers and then a ‘normal’ meal for she and I. She learns all of the methods and processes for treatments and also learns of the products and toys and devices which aid in helping him write, deal with his senses and so forth… she handles them out and about doing groceries and walks and such…

Every little thing you could do that sounds like a chore when you have a child becomes a very real challenging task when you add in Autism.

You can’t deny the complexity and you can’t deny the struggles that all of us feel every single day. But if you don’t adapt and learn when to make your child’s life a part of yours and to sacrifice and make your life a part of your child’s, then it can be down right impossible.

It’s even more difficult to explain it to friends and family around you who think you’re strange or even down right mean that you don’t take your child to a county fair, or late movie when they want you to just up and join them… if it doesn’t fit the routine, if it doesn’t fit their sensory and social needs, if there is no food for them to eat….  you simply can’t do it. And while they may never understand, you stay home and you keep your kids home… even when they are judging you for it.

Because as much as having a child can be a life changing experience…  their life is now your life.

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