Tag Archives | sensory

A Road Map for Autism

By on September 13, 2012 in Autism, Parenting

From the first moment a child is diagnosed with autism, parents find themselves catapulted into a chaotic world of therapies, alternative treatments, and doctor appointments. We are left to fend for ourselves as snake oil salesmen try to take advantage, book authors offer conflicting points of view, and everyone from the family physician to Great Aunt Hilda offer their opinions on our children and our parenting. Sometimes these opinions are informed, and many times they are not. We often exhaust ourselves running through what feels like a rat maze, in search of answers or at least some advice that actually helps. We develop our own opinions, fend off curious strangers in the grocery store, and probably find ourselves engaged, on several occasions, in World War III via internet message boards.

 

All of this happens because we don’t have definitive proof of anything. What causes autism? What is the best method of treatment? Which therapies work, and which ones are a waste of time and money? What path do we take when there are so many options, none of which have a clear end point? All of these questions remain a mystery. As scientists work to unravel the causes and possible treatments for autism, we parents are scrambling to find our own answers. There is this sense of fear pervading every choice we make: Am I doing enough? Is this the right choice? Is this even working? What if I don’t do it, and I find out later this is the best treatment? What if I miss a crucial window of development?

 

This may be the most difficult part of raising our children. The fact that we don’t have a clear course of action laid out for us means we are often confused, overwhelmed, and fearful of doing the wrong thing or not enough of the right thing.

 

On the other hand, it can be a blessing in disguise. It’s a bit like taking a trip without a roadmap. Yes, it can be stressful and we may feel lost at times. But we also end up exploring down side roads we may never have noticed otherwise. We see and experience things off the beaten path, and make discoveries of our own. Along the way we find what works for our children and adopt those strategies. Through trial and error, we also learn what does not work, and we are free to discard those treatments and move on.

 

In the world of raising children with autism, no two paths are alike. For my family, I found that enrolling my sons in an intensive, autism-only preschool had a huge impact on their development. They learned, from professionals specifically trained in autism interventions, how to communicate well enough to convey their basic needs. They learned how to sit still (mostly), pay attention, and work independently when required. All of these skills served them well when they were later mainstreamed into regular elementary school classrooms. Now that they are capable of mainstreaming in their school environments, they are learning more speech and social skills from their typically-developing peers.

 

I also moved the family to a tiny mountain town with a small public school system. There are only about 15 to 20 kids in each grade, and my sons are recognized and understood when we are out and about in the community. I found that this lifestyle led to an absence of bullying, and a lot of understanding and inclusion. We also immersed ourselves in the natural beauty of our surroundings, with plenty of hiking, swimming and other outdoor time, which has helped their sensory systems regulate. I didn’t read about this in a book. It was just something I felt, intuitively, that they needed. And it worked.

 

Other families are taking completely different approaches. They mainstream in preschool, or they don’t mainstream later. They live in bustling cities with access to everything they can imagine. Their children attend huge schools with hundreds, or even thousands, of other kids. Their paths are different, but they are finding what works for them as well.

 

Maybe there is a lesson we can take from this. The treatments for autism are as diverse as our children, and there is no set formula that will always work for every kid. The most important strategies aren’t found in books or on websites, but are innate qualities we can all embrace in ourselves. Follow your intuition. Listen to your child. When something works, keep doing it even if you feel silly. If it doesn’t work, discard it and move on. Respect your doctor’s opinion, but also realize they don’t have all the answers yet. And whatever you do, don’t worry about what Great Aunt Hilda thinks. The best advocate for your child is you.

 

So get in the driver’s seat, buckle up, and get ready for an adventure. There is no road map for autism, so you’re going to take some crazy side roads and wacky wrong turns. Sometimes you may find yourself alone on the road, and at other times you may ride in a caravan. You probably won’t take quite the same path as anyone else, but the path you do find will be the right one for your child.

 

 

Comments { 0 }

Chow Down

By on June 21, 2012 in Autism

 

“Alex, dinner!” might sound like an echo across normal backyards the land over, except in our house it’s followed, every evening, by “Here are your hot dogs, Alex.” Hot dogs sliced by the width, about a half-inch a slice, and they have to be Hebrew Nationals because if you use any other brand you’re not fooling anybody.

 

Compared with the rest of his development, Alex’s diet is arrested (I’d say “retarded” but don’t for reasons that are also starting to feel scary), and it’s progressed little in several months. Vitamins and stuff like Benefibre help, but regarding food we’re still parked at La Crème pink yogurt (“pink” is not an official flavor; raspberry or strawberry, doesn’t seem to matter which, but try the pale vanilla or the orange-y peach and you’re not fooling anybody). Utz Dark Special pretzels, plain cracker flavor Goldfish. Chocolate chip cookies, with Chips Ahoy a favorite, though homemade from the mix will do. Just make them crunchy with no soft-and-chewy crap.

 

“Alex, try these kale chips!”

 

Kale has a rep worse than that of hot dogs that aren’t Hebrew Nationals, but recently my wife Jill found this recipe where you chop kale, spread it on a cookie sheet with olive oil, salt it like mad and broil it for 20 minutes. You wouldn’t believe how much the result tastes like junk food. “Alex, here-” I try our time-honored method of touching the tip of his finger to the stuff we want him to eat and then touching the fingertip to his lips and tongue. The salt! The oil! Who could resist? Alex twists his lips into a sad rectangle, downturned at the corners, and makes a sound like Snoopy when he’s unhappy. Blaaaah!

 

Alex (almost 14, PDD-NOS) used to eat the cheese off a slice of pizza, that sausage-substance patty from inside the McDonald’s breakfast biscuit, maybe a few berries mashed in his teeth and smeared across his lips. “Jill,” I ask, “what can you tell me about Alex and eating these days?”

 

“I dunno,” she says. “It’s just so difficult. I did get him to drink chicken broth the other night, but I didn’t strain it enough and he kind of gagged on a bit of vegetable…”

 

It isn’t a matter of what but also how: We want Alex at the dinner table. Ned sets placemats for him, but Alex just snatches his bowl of Hebrew Nationals and heads back to the couch to eat them over his iPad. I know we should drag him back, take away the food, starve him until he eats food in the place where we, his family members with the supposedly whole brains, know it needs to be eaten. People have given us this advice, I notice that the people who give such advice often don’t have autistic children themselves. We let him eat his hot dogs at the couch over the iPad for yet another night, but I know we’re just fooling ourselves.

 

Comments { 1 }

The complications of having delayed sensory overload problems

By on January 31, 2012 in Autism

I have a bit of a booming voice, it can get loud… so when my dog is particularly bad or my boys stop listening and I raise my voice… it gets attention. I’m not yelling or screaming out of control by any means, it’s just… raising my voice is… loud.

The problem with this is that my son Cameron is especially affected… since a sudden loud voice like that can send him running to hide under some blankets.

At least when that happens though, it’s instant. I’m done, he’s done… we go about our day. No worries.

The real issues come into play when it’s not done and over in an instant.

A positive is a negative

Cameron shows some pretty amazing resilience sometimes when it comes to being able to handle himself. Yesterday was a perfect example of this.

My boys were invited to a birthday party at an indoor playground where kids were free to just go anywhere and do anything. There were games all around, flashing lights and a huge network of netting and tubes to climb and go through.

A child’s paradise!

house of wee

Cameron is in green

When we arrived the place was full which meant the entire place was just a wall of noise. An occasional crying child somewhere in the distance, lots of screaming and a bit of laughing mixed in.

Cameron and his little brother jumped right in and played just as any child should… it was quite nice to see. They had a lot of fun.

But I knew, I just knew that this was going to be too much. It was too much for me and I wasn’t right in the middle of it.

See, Cameron won’t just have a meltdown right in the middle of the place… instead, he’ll store all that pent up energy until he’s back home where he feels safe.

So, even though he can have a great time and handle himself quite well for quite some time… it comes with a price.

Solving the mystery

At first, this presented quite the challenge for us as parents as we’d have to figure out why our little guy was completely out of control for a day or two. To us, it would seem completely random that he’d just be really moody, extremely hyper and very much unwilling to listen to us or do the things we asked of him.

But it wasn’t random. It was actually very much a cause and effect situation (which most things are), where the effect was hyperactivity, irritability and lack of control… and the cause was over stimulation that no one had noticed.

What would happen is that my son would go to school and they’d have an assembly, or go on a field trip, or a party like the one I just described… something somewhere would happen and even though my son had a wonderful time and everyone thought he was just the most perfect little boy… there was actually a time bomb building up pressure, waiting to get home.

The biggest thing is, it’s entirely up to us as parents to solve that sort of thing too because no one else will ever see it. They only see the boy that holds it all together during the day.

Over time, I’ve come to recognize the clues though. For example, at that birthday party, when it came time for everyone to sit and have cake, all of the kids were excited.. but only Cameron bounced in his seat. Literally.

He had so much pent up energy in him, beyond what the other kids had, that he quite literally could not keep his butt on his seat. And while he was still quite happy and having fun, I knew that if he can’t keep his butt on his seat even after I ask him too, that it’s a sensory problem that’s been building up.

Something he just has to do for himself

This is one of those cases where, we as parents, could decide to just not go to those places so that we don’t have to deal with the after effects but that’s not very fair to him. He loves going to those places and doing those things.

We could read every book we have and talk to every professional we can find and try to set up systems and procedures to deal with the after effects at home in a constructive way.

But ultimately, this is something that he has to learn to deal with. I can help to guide him as best I can, help to calm him, focus his energies somewhere… but this is something that is likely to stay with him for the rest of his life.. unlike me.

And to be honest, I think he’s starting to get it. When he gets home, he’s still moody and hyper but he’s learning to take time for himself to go off and make believe something on his own. His little brother gets mad sometimes that he can’t go be with his brother but it’s obvious that it has to be that way.

When he’s given his space and allowed to get that energy out through pretending his favorite video games, pokemon or bey blade battles… what ever it is he needs to envision… it works for him. At least usually.

It’s great that he’s able to do that. And it’s even greater that he’s able to put it all aside in the moment and be “just one of the kids” when there is fun to be had.

It’s been hard for us to figure out and to deal with… I’m sure it’s been even harder for him… and we’ll always get people asking questions about it as it’s not quite ‘normal’… even by autism standards… but it is what it is and it works for us.

Comments { 3 }

My child vs his shirts

By on December 13, 2011 in Autism

Cameron - Breast ManThis story begins back when he was just 3 months old and we were already having to buy him shirts for a 6 month old…  born at a modest 7 pounds and 2 ounces, we had no idea that he’d grow so quickly.

At 3 years old, he was wearing clothes for a 5 year old… by 6, he was wearing clothes for an 8 year old.

Basically this meant that any clothes we bought him one summer would be donated by the next summer. In some cases, clothes we bought him at the beginning of summer were no longer fitting at the end of summer.

His shirts didn’t last very long but they usually survived to be handed down to his little brother or donated.

That brings us to our current problem…

Satisfying the senses

My son has taken to the habit of stretching his shirts such that the collar comes down across his shoulders, or he pulls his arms up into his shirts and stretches out against it.

Worse than that, he now chews on the collars and the ends of his sleeves as well.

The frustrating part of this is that just a year ago, we had a lycra bag that he could get into and stretch against as much as he wanted. This is an actual therapy tool for those that need that kind of stimulation.

Cameron had no interest in it.

Now we’re a year later and he’s running out of shirts.

We have an appointment to discuss this with his therapist but honestly, I am semi convinced I already know what needs to happen… we need to try what we tried before.

I don’t know if it will work, but if it does, it will certainly prove just how complicated Autism treatments can be. Not only does no one treatment work for every single person, or to varying degrees, but it also shows that what might not work at one time may work at another.

As children develop, as lives change, as situations are constantly in motion… the needs of the individual can change too.

It’s one of those very frustrating situations because not only is he going through shirts quicker than ever before but, as an Autism family, we have less money than ever to be replacing them.

We try to keep on top of him, to remind him to stop but honestly… have you ever tried to get someone to stop tapping their foot, pen, fingers, knee… those things that people do without even realizing it… how do you stop that?

It’s just that much worse when there’s an actual NEED to do it… such as sensory stimulation.

I guess we’ll just have to talk to his therapist and see what our options are.

Comments { 5 }

Handheld devices and the benefits to children with autism

By on September 14, 2011 in Autism

I mentioned on Twitter the other day that my son wants a Nintendo 3DS for Christmas and a few parents got into a discussion about how great the handheld devices were for children with Autism. Also, when I wrote about taking children with Autism out to restaurants, a lot of parents were quick to point out that they often brought along devices as well to help.

So what is it about handheld devices that are so great for children with Autism? What are the downsides?

It’s all about control

handheld devicesHaving something right in your hand gives you complete control over it. That means that if you pause a movie, take a wrong turn in a game, flip pages in a book too fast… no one will be upset, no one will say anything… it’s only for you and you are in control of it.

You don’t have to wait for anyone to do anything, you don’t have to ask for permission before making choices… it’s all yours.

Doing what you love

My son loves to read books and play video games, which means that I can put a book in his hand or a handheld video game system and he’ll keep himself amused for hours. It’s what he loves and it’s right there in his hand.

When we parents think about bringing something to the restaurant to amuse our children, we don’t grab things they hate.. we get what they love.

Sometimes that takes trial and error but most likely you’ll find something pretty quick, especially since they get to control it.

Blocking out the world

The best thing about having something in your hand, engaging your senses is that it allows you to block out other input around you, such as sights and sounds.

If you have Autism, this could be huge. No more restaurant noises bothering you… however, if you’re a parent trying to get your autistic child’s attention while they’re playing a handheld game.. you may find yourself getting frustrated pretty quick.

Putting the three together… you have something you love, complete control over it and you can immerse yourself into that handheld world, blocking out the rest.

These are very important to children in general, more so to those that have Autism. People with Autism focus intently on the things they love, to the point where they need to block out the rest of the world.

Educational

Everything your child absorbs when they can control it, love it and focus solely on it is learned on a scale far greater than any other method.

And it doesn’t have to be an educational program or math book to do it either. There are life lessons in movies, there are problem solving and motor skill building qualities to video games. Your child will gain a lot of valuable knowledge and skill simply by being so engaged by that device in their hands.

There are no distractions, they love it and get to enjoy it even more when they have full control over it. What they learn… they learn. It doesn’t just go in one ear and out the other.

If you do get them reading a book, or doing an educational program on the ipad or something along those lines… all the better!

The one big downside

There is one major problem that most everyone will run into, Autism or not… but a child with Autism will find it even more difficult… that is when it comes time to turn it off.

The more a person loves something, is in control of it and is completely immersed in it as if it’s your whole world… the harder it is to have it ripped away.

I don’t know anyone that had an easy time getting a game, or book, or movie, or ipad, etc away from their child when they’re fully immersed in it. It’s going to be a battle…. at first.

But you can look at it more as a way to practice for the real world because let’s face it… if they don’t learn how to let go now… there will come a time when they’ll have to do it at school, work or just generally in public and if they haven’t had that practice, it could be a huge problem.

It used to be the #1 cause of meltdowns for my son.. he’d do great all day, get a game for a reward and then blow up when it came time to turn it off. But as I said, it “used to be”. He’s so much better now because he’s learned, over time, that it’s ok to put it down. It’s ok to put it off for another time because soon enough, if he behaves, there will be another time.

We just had to endure the meltdowns for a while to get to this point.

Handheld devices such as books?

You may have noticed I referenced books in with the other electronics in my examples… for Cameron, he loves books. A lot of the time, we can get a book from the library or from a friend and he’s more than happy to sit down with that for an hour.

He can’t read much of it (only really small words) but that doesn’t stop him from enjoying it.

You don’t have to force feed your child movies or video games… anything they love will do. Sensory objects, art work, books, money… yeah, my son also loves to sort out coins and such.

That being said, there’s nothing wrong with movies, games or ipads… they’re all helping your child to learn too. You may wish to limit those things a bit more but still, there’s no harm in giving your child a good game or movie.

The escape, the interactions…. all of it is not only good, it’s important. Your child may have a meltdown when it’s time to turn it off but it’s still valuable coping skills they’re learning.

Don’t feel like you’re doing anything wrong by letting your child stare at something in their hands for an hour or two… it’s good for them. It’s a valuable growing tool.

Comments { 0 }