Autism is not going out today

It’s a wonderful sunny early summer Memorial Weekend. The sun is shining in a clear blue sky, birds chirping and a gentle breeze.

Families all around us are cooking out, swimming, and have family over. We sit alone, in the house.  Watching other people live. I can hear the laughter and shrieks of children having fun outside. I remember my own childhood of large family Memorial Day picnics in grandma’s back yard. Us children running around playing hide and seek, grabbing hot dogs on the run while we played until dusk. Come dusk it was time to roast marshmallows and my grandpa would light the sparklers for us. I remember how much fun those days were, and how delightful it was to trace circles in the air with my sparkler. I got to stay up late and look for fireflies with the other children. It was those summer nights you never wanted to end.

This is not the childhood my son gets. We were invited to a large cook out. We could not go because my son is having  a particularly autistic weekend.  He is irritable and does not want to go anywhere. He doesn’t like it outside because it’s too bright. Anytime we try to suggest doing something he melts into a tantrum. We can’t go out for lunch because they have too much paper at the restaurant. He can’t take the napkins and place-mats. He is crying in his bed. So we don’t go. We

English: A picnic assembles in Columbus, Ohio.

A picnic assembles in Columbus, Ohio. (Photo credit: Wikipedia)

opt to cook at home. We make his favorite barbecue steak. He won’t eat it.  He shouts out that my food is bad and I don’ t know how to cook. This is the child who normally loves barbecue steak, but this week he won’t eat any of the food he normally eats.  Today he’s only eating Cheerios and bagels.

It is another holiday we will miss again. It is another weekend we cannot leave our house. And while it’s not happy for us I remind myself how much harder it must be for him to be trapped in autism. To not be able to enjoy things other

children enjoy. He’s missing out on so many things because autism gave him sensory dysfunction. Autism made him sensitive to light, sound, touch, the sight of paper or too many people being around him.

Instead of cookouts and Popsicle. We went to Super-Walmart. My son loves to look at the toys. This brings him happiness. It’s empty to me and it’s not a “family holiday” but its something he can enjoy and so I must enjoy it with him.

 

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Living in Autism

Dietary supplements, such as the vitamin B sup...

(Photo credit: Wikipedia)

I think most families really don’t know how very different is it to live with autism. So I thought I’d point out some of the things we live with. It’s  certainly nothing  like mom’s in generations before us.

My kitchen counter does not have a Cuisinart but rather has at least 10 bottles of supplements sitting out on any given day, along with three pill minders, measure spoons, empty capsules….

My cabinets are not full of crystal and fine dishes, but rather baskets of supplements. We have our Vitamin bin, Mineral Bin, Antiviral bin, Immune bin, powdered supplements like greens, and multi- powders bin……people make jokes at my house about “where do you put your dishes”.

When I get a pay check I don’t think “Awesome! I’m going shopping for a new pair of shoes”…it’s more like  “Yippee, I don’t have to charge this months vitamin order AGAIN!”

I am no longer embarrassed by my son hiding under a table in a restaurant. But rather I think the other people should be quieter instead of staring at us, then he would come out of there!

We don’t leave the house without vitamins in our purse and a hand fidget toy.

I don’t have butter in that little flippy door inside the fridge because its full of liquid herbs and probiotics.

Most people have condiments in their fridge door. I have ketchup and then cod oil, flax seed, transfer factor, etc.

People wonder why do we need  4 cartons of organic eggs in the fridge when they have one carton of cheap eggs? We are “omega loading”!

I have a trampoline in my house…..need I say more?

Hopping is a normal means of transportation. And flapping our arms if fun!

I know how to pack an older kid “diaper bag”

I don’t worry about hiding clutter when people come over, I worry about hiding all the vitamin bottles!

Leaving the house without first scheduling it in isn’t an option.

Tying your own shoes isn’t that important. That’s what velcro and Crocs are for!

I have TWO toasters. One for gluten and one for no gluten.

We cannot buy the other brand even if it’s on sale because its “different from our normal brand.

I have thought of making a t-shirt that says “I have Aspergers so pardon me!”

We don’t go to public family places on the weekend, it’s too noisy.

That children can’t use the furniture properly most of the time.

I don’t need GPS I have a child with a  photographic memory in my backseat!  He’s helped me navigate many times.

That cardboard boxes aren’t for stuff, it’s where you find your kid!

We must adhere to the exact speed limit at all times or we will be reprimanded by our “backseat driver”.

Parties are not fun.

Surprises are not fun.

I know more about Sci-Fi than I ever wanted too.

I know more about the human gut than I EVER wanted too!

I have a Google University degree in vitamins and herbs.

I know that children with autism are special and wonderful and that’s the most important difference!

A Real “Living in Autism” Kitchen!

© 2011 The Edge of Autism

 

Riding the Autism Railway

Locomotive

Locomotive (Photo credit: Creativity+ Timothy K Hamilton)

As a parent the road through autism is daunting in the beginning. It goes something like this:

You are on a train heading down the tracks and you see that something isn’t right. You can’t tell if it’s the track that’s wrong, the train is moving too slow or the surrounding landscape is foreign. You just know this doesn’t feel right and you aren’t in control of it. You wonder if you did something when you pushed that button in your cabin quarters.  As the train chugs down the track it’s zigzagging all over the place and now there’s smoke coming out of the engine room. It’s clear something’s wrong. You just don’t know what to do about it. You struggle with guilt. Maybe this is your fault for choosing to take a trip this time of year. You call the train engineer and point out the problem, but he says it’s fine. It will stop, it’s just stalled a bit but it will get back on track. You go back to your seat, biting your nails, hoping he’s right, but your gut knows he’s not.

You near the next station and the train is supposed to stop, but instead it veers off one of the changing tracks and heads the other direction. Now the smoke is pluming out of the engine room and you feel the train is shaking and rattling more than it was before. You pull out your iPhone and start looking up problems with trains on the internet. You find a train model called The Autism Rail 2000. As you read the details of the Autism Rail 2000, you see the problems this train has. Its known to have any of the following: rattling, shaking, pluming smoke, random track changes, missing stops and so on.

Now you know that there really is something wrong, you’re on the wrong train. This isn’t the train you bought a ticket for. You purchased your ticket for the Neurotypical Express. Not the Autism Rail 2000. How did this happen? You were sure you bought the right tickets. You double checked the order, you verified your train trip before you left the house. You call the conductor over to point out the error in your ticket. You ask to be dropped at the next station to pick up the Neurotypical Express. He tells you “sorry, no exchanges ma’am”.  You’re heart sinks and you are confused.

Now you try to reach out to other passengers and train personnel for answers. Some of them have been on the Autism Rail a long time. Others are confused and new like you are.  You all convince the engineer to take the train to the next stop where there is a locomotive mechanic. You hope he can fix this train, or at least put you on the Neurotypical Express.  When you arrive at the station the mechanic asks what the problem is. You tell him and he shrugs his shoulders and says ” Sorry ma’am that’s how the Autism Rail  was built, there’s nothing I can do to fix this train”. You might try the specialized locomotive mechanic, he works on Autism Rail 2000’s.

You and the other passengers have a glimmer of hope that maybe this specialist can fix the train.  However, when he comes out to see the train he tells you it’s going to cost a lot of money.  Don’t worry he takes credit cards.  You and the other passengers dip into your wallets and purses to scrape together what money you can find in hopes it’s enough for this mechanic to fix up the train.

Finally, you pay him and he goes and looks in the engine room. He kicks the wheels a bit, test the horn and says “well it is an Autism Rail 2000. They haven’t made too many of these. They don’t always run properly and sometimes they need a lot of extra care”.   Eagerly you question him to see if there is any care that will help. The mechanic hands you a long list of parts and a special fuel that he says will make the train work better, but you have to buy these and replace them every month. And he tells you even if you do that, “It won’t be a Neurotypical Express, ma’am. It’s going to run slower, and need more care. There’s really nothing you can do to make this train like the Neurotypical Express”.

He tells you, you’re just going to have to accept that this little engine will never be like the rest.

This is the rail many parents stay on.

But not me, I got back on the train and I talked to the people who had been riding it longer. I asked them what really does help the train to run better and can I fix the train?  I knew that other trains could improve, even when the Neurotypical Express broke, it could be fixed. So why not fix the Autism Rail 2000 I had?

While this entire story is an analogy. It’s how it goes. We suspect there is something atypical about our child. We are told by others that it’s fine. We get more evidence that it’s not fine. We find ourselves confused.  We starting wondering if we did something wrong. We seek help but are told there isn’t any. Some of us accept that and do nothing further. Some of us fight and seek answers.

I sought answers.