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Some Autism resolutions for New Years

I’m not really a big resolutions person. I believe that people should try to improve on themselves all year round, not just because they bought a new calendar.

Still though, it is a tradition and in that sense, I thought I’d offer up some thoughts on things that we all (or at least, most of us) could resolve to do a little more, less or better in the new year.

Some suggestions

2012 new year wishes on sea1. Stop using the word “retard” or “retarded” to describe things, situations or people that you do not understand or that makes no sense to you. In fact, stop using the word entirely.

2. Stop assuming you know a person’s life story by a brief moment in time. The lady at the store with the screaming child? You don’t know her. You don’t know her child. The homeless guy that only wants to share a smile with you? You don’t know how he got to be homeless. It could have been no fault of his own. The girl that gave up her baby to adoption, you don’t know her reasons or how it could have been if she didn’t. You do not know people based on 1 short experience.

3. Finish a debate or argument without using a single derogatory comment, name calling or reference to their own history/personality. Pick a disagreement, or try to do it with all disagreements, and make every effort to disagree based on facts, not emotions or personal opinions.

4. Stop making it your life mission to correct people on every little thing. The autistic person that calls themself autistic? Maybe you shouldn’t tell them to use “people first” language. The person who’s tried the gluten free diet but found no benefits, maybe they don’t need to hear why you think they are wrong. Inform folks, don’t feel you need to correct them all the time.

5. Stop reading into everything until you find the negative. Take a compliment, a kind thought or a good intention as it is intended and stop trying to find a way for it to be a bad thing. Ulterior motives, unintended meanings, alternate ways of interpreting… just stop. You know what they meant.

6. Slap yourself (metaphorically) the next time you tell yourself that you can’t do something or that you’re not good enough. Whether you have Autism or not. The next time your inner voice tries to stop you from doing something you really want to do… remind yourself that you promised to not listen one time… and do it.

7. Take something you feel negatively about and write out a list of 10 positives about it. If it’s Autism, write out 10 positives about Autism. If it’s city traffic, write out 10 positives about city traffic. It doesn’t matter what it is… just something that you really do not like. The goal is not to change your perspective such that you will now like it, but to realize that, if you give it some effort, you can find something good in the most unlikely of places… if you just stop the negativity for a moment and try.

8. Place a value on your time. Make “free time” a thing of the past and figure out how much your time is worth. Don’t joke about it, figure it out, even if it’s too low or too high. Now, the next time you find that you’re bored, being lazy AND… the next time that others ask you do things for them, keep that value in mind and ask yourself if it’s really worth your time… or if there is something better you could be doing. If your time is valuable (and it is), use it… do something with it. Get creative.

9. Donate or volunteer for something. If you did #8, you know that you are worth quite a bit. So put that value to good use and give some money or time to those that are in need of both. It doesn’t have to be a lot. But if you’re like me, it’s one of those things you have every intention of doing but just don’t.. or don’t do as much as you’d like. Make it happen.

10. Look in the mirror and tell yourself “I’m proud of me”. Do this once a day if possible but even to do it just once in the new year, do it. In the mirror, looking yourself in the face. You’ll know if you’re being sincere or not… and do it until you are.

If you have Autism, be proud of who you are and in your strengths. You do have them. Be proud that you are you, no matter how much others may try or wish to change you. Be proud. You are not the exception… you are exceptional.

If you have a child with Autism, be proud that you’ve handled the looks, handled the added stresses, over come the struggles, that you’ve done more than you thought you were capable of for your child. Be proud that you’ve surpassed those “you’ll see” comments from family and friends when you first had a baby… those people, who thought you were in for a shock.. had no idea what it could really be like. You do, you did it.

Even if you have no disorder, no struggling loved ones… even if you look in the mirror and think “I have none of those reasons, why does my life seem so hard?”… stop thinking that and tell yourself “I’m proud of me.” Life is hard… for everyone! Don’t beat yourself because you have it worse and certainly don’t beat yourself up because you don’t. Be proud of who you are… it’s not a competition to see who has the most scars. Life dishes them out no matter who you are and it’s up to you to face those scars in the mirror and be proud of yourself.

Happy New Year

Stop making resolutions to lose weight, stop smoking or other “typical” ideals that you think that society would want you to make and start thinking about ways to just be happy with who you are.

Put aside any negativity that you can, incorporate any positivity that you can and just give it a try when you normally wouldn’t have.

Autism is a struggle, whether you have it or devote your life to a loved one that has it… it can be hard. Life itself, even if all goes well, can be hard.

Don’t let negativity in your own mind make it harder… and certainly don’t use that negativity to make someone else’s life harder.

Smile when you don’t feel like smiling. Find a positive where you see only negative. Tell yourself your proud of who you are even when all you can see is regret.

Be a little more understanding of others, accept them for who they are. Be a little more proud of who you are and what you’ve accomplished. You’re a valuable person, even in your free time!

Have a very happy new year… you deserve it.

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Why don’t you celebrate New Years Eve?

I get this question a lot, because it seems very much out of the ordinary to not be up at midnight, getting drunk and kissing someone at the stroke of midnight. To not do it is… blasphemy!

The answer is really quite simple.

happy new yearI wake up at 5am many mornings, sometimes earlier, sometimes I wake up often through the night. I have 2 children that require a lot of my time and energy even when I work 8 – 10 hours a day. By the time it’s 9pm and my boys are asleep, I’m ready to go to bed myself but I can’t because there is still more work or chores around the house that need doing.

So I get to bed around 11pm and again, sleep 6 hours or less if I’m up often due to the boys… and do it all again. And I do this 356 days a year.

So already the answer is forming…. but there’s more.

My oldest boy, Cameron, has Autism. That means that we can’t just hire any teeny bopper with a need for some cell phone minute money to come in and take care of my children.

In fact, even most responsible adults are not really ready to take on that task. Only those that know him well. And those people tend to have full lives of their own already so are not readily available.

Take a special day like New Years Eve and.. well, those older, responsible, living life people are already doing something on New Years Even that doesn’t involve being stuck in my living room while some kids that are not theirs are sleeping.

So no… we don’t go out and celebrate New Years Eve. In fact, we don’t even stay up until midnight.

Because when you add it all up, when you really stop to think about it… the needs of your children, the happiness you get from their achievements, the importance of you being there for them when they need you… all of what entails being a parent…  Dec 31st becomes just another night.

You’ll still be ready for bed at 9pm that night.  The kids will still wake up early the next day.

Besides, it’s not that I don’t “celebrate” it… it’s just that I don’t do what everyone else thinks I’m supposed to do. I give my wife a hug and kiss. We say “Happy New Year” to each other and to others as well.

It’s just different and believe me, different is one thing that we’ve become quite comfortable with around here.

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No one knows your child better than you do, not even Santa!

Usually in the world of Autism, this refers to teachers, therapists and doctors but the truth is, it can apply to anyone… this year, it was even proven to be true of Santa!

nintendo 3dsPeer Pressure

So back in July, Cameron told us that he wanted a Nintendo 3DS, and reminded us of that fact every week for the next several weeks. He even knew which games he wanted.

Then in October, Cameron’s friends at school got him hooked on Bey Blades… a spinning top kind of battle game. He loves them. His requests for the 3DS died down… he still wanted one, but he didn’t talk about it anymore.

Here’s the thing though… what he wanted and what he wanted due to peer pressure (his friends wanting)… are two different things.

Video Games

If you’ve followed my blog, you know that Cameron is a video game boy, through and through. He loves his video games more than anything and they love him too. He’s developed some great motor skills, reflexes, problem solving skills and more.. all due to his video games.

To give you an example, Tyler (his little brother) got the new Sonic Generations video game on December 4th (for his birthday)… so Cameron got to play but played it in much more limited portions than normal. Since it wasn’t his game, he didn’t get much play time at all. Maybe an hour a day, some days no playing at all.

And yet, he finished that game less than 2 weeks later. Less than 14 days and he had beat the boss and won the game. That’s pretty good for anybody, much less a six year old with Autism.

Anyway, back to the 3DS… my wife and I decided to get him the 3DS from us, since it’s what we know he really wants and we left the Bey Blades to Santa… who was very generous. He got 7 of them in total and a stadium to have them battle in!

And the winner is…

Christmas morning came and went, wrapping paper everywhere and more boxes than our recycling bin can handle… and 2 days later, he’s just now starting to open his Bey Blade packages to try them.

What has he been doing all this time? Playing with his Nintendo 3DS!

Truth be told, the only real reason that he even played with his Bey Blades this morning is because we don’t let him play video games in the morning.

Things will change though, once he goes back to school and his friends are playing with their Bey Blades… and he can’t take his video games with him.

But still, the lesson is… no matter what his friends have, no matter what he changes his mind to… we know him better than that.

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How do you explain Veteran’s Day / Remembrance Day to a child with Autism?

If you’re curious about the title, in the US, Nov 11 is Veteran’s Day, in Canada, it’s Remembrance Day. Why is it named differently? I have no idea. Anyway, I digress…

So today we had to tell my son that he’ll be going somewhere special when he goes to school, that they’re taking a special trip to the local Legion hall to see some history, maybe learn a little bit about the darker side of our world… war.

This left me having to explain to him what Remembrance Day is (yes, I’m Canadian).

To start off with, Autism or not, how do you explain concepts so huge to a child, such as world peace, soldiers dying, sacrifices for our freedom… it’s all pretty grim to be talking about with a child as it is but when you get into details, what does a child know of such things?

Now, if you factor in Autism, you run into additional barriers such as the concept of the past. My son, and many with Autism have a tough time with the concept of time in the sense that something happened so long ago, or won’t happen for so very long. Recognizing how long hours will be is enough of a challenge much less years, 10’s of years, dozens of years!

Then on top of that, is the concept of death. Children in general think of death as something that happens to their favourite video game character where they pop back up and you try again. Children with Autism have a whole other level of non-understanding on top to deal with. You can talk in circles for hours trying to explain death to a child with Autism. You’ll depress them but they will very likely never actually understand it.

This brings me to my talk with my son this morning.

remembrance day poppy

Lest We Forget

It started with “Once upon a time” because children identify with that from various stories and movies. This gave the concept of time as simply being “before now.”

I then explained that there was a bad guy…. like Bowser. He’s the bad guy in his favourite Mario video games. And like Bowser, this man wanted to take over everything and have everything for himself.

But people, people like mommy, daddy and grandma and grandpa and so on all went to fight the bad guy and stop him from taking over.

This really got his excitement level up because he was visualizing us as Mario characters going off and jumping on Bowser’s head to stop him.

The real let down was in explaining that those people weren’t video game pretend people, they were real life people with real life boys and girls at home, with real life beds to sleep in and real life friends to hug and kiss.

Once he got that concept, I explained that some of those people, that went off to fight Bowser, they never came home again.

This was the part where he started to ask a lot of questions, the one he asked most was “never ever ever?”

I think that was the part where it sank in most… and really hurt me most, to be honest. I kind of wish he hadn’t gotten it. As proud as I was in being able to get the message across, as proud as I was that he was able to get the concept, even if skewed slightly… at that moment, I wish he hadn’t.

He asked about them seeing their mommy’s and daddy’s again, and I said no. He asked about them coming back later, after the fighting… and I said no.

To try to make sure he didn’t “get it” too much, I explained to him that the good guys did win. The bad guy was defeated, the fight was won! And he, myself and everyone are free to go to school, have candy and play games.

This helped, he really likes it when the bad guy loses.

However, this prompted him to ask “so then everyone got to go back home?”

Oh well, so much for perking him back up again.

But that was the moment I had been waiting for to explain that those people that beat the bad guy in a big fight but still never got to go home, today is their day. Today is Remembrance Day because every mommy, daddy, little boy and little girl remembers those good guys that won the fight but never got to go back home.

Today is the day we we feel sad that they will never go home. Today is the day that we feel happy that the bad guy lost. Today is the day we tell our little boys and little girls about the good guys.

Cameron is at school now, I’m sure all of what I talked to him about is still going through his head. I know it’s still going through mine.

He might not get the concept of when anything happened, he might not get the concept of the whole world being involved, he certainly doesn’t get the concept of death… but he knows the good guys won the fight against the bad guy but some will never get to go home.

It’s probably not the best analogy in the world but it made him sad, made him proud and made him start asking questions.

In the end, that’s the whole point of today, isn’t it?

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Some Christmas tips for those with children on the Autism Spectrum

Christmas is stressful enough for parents, having to budget and shop and organize and decorate and so forth… it becomes that much worse when you consider that your child or children won’t even enjoy all your efforts. Quite the opposite, it might be too much for them and ultimately become a disaster.

I won’t be able to solve all your problems, the vast number of issues that children can have in such a hectic and very big period of time can’t really be covered in just one blog post. But I do have some suggestions that will hopefully make it a bit easier.

Christmas Shopping

Cameron Christmas 2005

Cameron's First Christmas 2005

The great thing about malls and stores starting the holiday shopping season so early is that it gives those of us with Autistic children a pre-boarding pass. It means we can avoid the crowds and craziness and just take our time. Most of us don’t, but we could… and we should.

Actually, you should start shopping in January if you can help it. If you’re like me, Autism and having a family in itself can drain the bank account quicker than we’d like. So us Autism parents have to spread out the shopping through out the year even more than most families, and it’s a good idea for everyone. If you spend $50 on one present each month for 3 months, it’s far easier to manage than to spend $150 on 3 presents from one paycheck in November or December.

Speaking of November, early November is a great time to get your children into the stores to start window shopping. Take some notes and see what they like, what they don’t like. It allows them the freedom to really think about the toys rather than the other kids around them, the crowds all talking at once and so on.

It also gives you a stress free outing (or less stress anyway) where you can really get some good vibes from them.

Another alternative is catalogues. Everyone’s done the catalogue thing, where you circle toys/games that you want. This is something that even non verbal children can do, they don’t have to get it perfect but can usually get the message across to you.

The down side to shopping in November is that their wishes may change in 2 months, but it’s a risk worth taking. Even if they decide they want something else in that time, they’ll likely be reminded and very happy once they see what they were thinking about just a short while ago.

Decorations

The good thing about decorations is that they come in all shapes and sizes, however the bad thing is that some will have an adverse effect on your Autistic children. And the affect it might have can be so subtle that it might not show up for several days. Blinking lights, glittery objects, sound making trinkets all over… these can wear down the senses over time without anyone even realizing what it was.

A few things should be in your mind:

  • If you insist on lights (and who doesn’t?), pick lights that stay on, or have settings such that you can have them blink from time to time but be set to be consistently on the rest of the time.
  • Some tinsel is nice, but if you have bright lights aimed around or aimed at the tree, these and other decorations can give off blinding little flashes that you and I might not think much about but can get very frustrating. If you notice your child ‘retreating’ from the room or finding a favourable spot, it may be because it has the least glare.
  • Some singing or noise making decorations are great, they’re especially great if they are activated in some way. For example, a singing plushy that goes when you press a paw or foot is a great way to give your children control of it. Random sounds can be a little scary.
  • Background music is best kept in the background, if at all. That means, keep it quiet. If you have it to where you can make out the words and sing along, it might be too loud for your little one. Remember, your children might not have a ‘background’ setting when it comes to their senses. That means that what you barely notice is there, they hear perfectly clearly and are having to battle that music while trying to listen to you.  If they don’t listen to you, it might just be that they don’t actually hear you.
  • Get your children to help with decorations. Have them decorate the bottom half of the tree, or along some railings inside the house… someplace low. Getting them involved is a wonderful way of helping them cope with them being there. They feel a huge sense of pride but also comfort in knowing that the decorations are there because they put them there. They remain ‘in control’ of their space.

Family Gatherings

The best you could do is to have everyone to your house for Christmas but unfortunately this just isn’t a reality for everyone. Whether it be a small house, distant family or just that family would like to host their own gatherings sometimes, you’re just going to have to face the reality that you will have to leave the comfort of your own house.

First and foremost, before anyone goes anywhere, try your best to make family realize that your child is going to be overwhelmed. Have patience, you can handle it, your child doesn’t mean to be bad and could possibly come across that way at some point. Some might not understand no matter what you say but at least you will have said it, and some will ‘get it’ and hopefully speak up for you when you’re not there and someone makes a comment. It does happen.

Also, your family has to realize that your child will very likely not hug them, much less give them kisses, to get their presents or treats. Don’t let anyone force your child into that sort of situation. It’s like asking an arachnophobe to go into a room full of spiders. The first person they have to reluctantly hug for something in return may be the trigger that makes the rest of the night unbearable. Make sure your child says please and thank you but that’s it, no one should expect more than that.

If you do get Christmas at your house, discuss ‘safe zones’ with your children. Someplace they feel safe, it’s quiet, comfortable… set up some toys or anything else they like such that they can retreat when need be. They might just disappear there the whole time but it’s better than what could be the alternative.

Going to someone else’s house to celebrate the holidays doesn’t give you a safe zone but that shouldn’t stop you from finding one. If your child needs space, take them there. Don’t make it a time out zone or anything, but just a place to get away. Let the family think they’re being taken off as a punishment if they truly don’t understand, but don’t let your children think that. It’s just meant to be a way to ease the senses.

Also, forget about dressing them up to look good. You seriously have to put away the expectations or opinions, even from family. If they can’t understand that your child simply can not wear those fabrics or collars or what ever, then too bad for them. They’ll just have to talk behind your back. Your child comes first before their attire opinions.

Food

When it comes to differences in Autism, food is a huge factor. You could have thousands of children all in a room and no two of them would have the same diet. Family will never ever listen but it still doesn’t hurt to tell as many people as you can to NOT FEED YOUR CHILD ANYTHING.

It’s a ground rule with my family, they know it now and abide by it but still, sometimes things slip. Just last night even, a family member was going to give my son a rice crispy treat until another family member spoke up and said “you better check with his mom and dad first”. She did. Turns out, it had gluten in it, which Cameron is not allowed.

And that’s the key right there. If you get enough family members on board, someone might speak up in time even if some family members don’t know or won’t listen. It could save you a lot of trouble later on.

You can try to educate as many people as you can but ultimately the best solution is to just tell everyone not to give your children food. They will be so very tempted to spoil your kids, that’s what family does. But hopefully after a Christmas or two, or some right words, they will listen to you.

For us, our family had to actually see my son bouncing off the walls after eating gluten, and witness the radical change in him to understand just how much it affects him and why we are so very adamant about this basic rule.

Presents

Let’s face it, you can’t tell everyone what they should or shouldn’t get you. And telling everyone to just send you cash doesn’t make for a very fun Christmas.

Hopefully if you’ve done your window shopping early enough, as described earlier in this post, you will have the time to send out some ideas to family from your list.

If not, the question has been asked of me if I’d be happy or offended that family tries to get sensory friendly toys for my boys. The answer is, I’d be thrilled. Even if not quite right, it would show me that they actually ‘get it’ and are trying.

That being said, a good general rule of thumb that my wife and I go by is to let them get what they want to get… and keep the educational and sensory presents up to us. After all, who could possibly know better what to get in those departments than us? And what family member wants to get a boring educational toy when something else would look more fun?

In the end, you just have to remember that every parent has a child that gets presents that are just not appropriate, or just too loud, or just simply unwanted… having a child with Autism might make it more likely but it does happen to everyone.

Don’t get offended, don’t make a big deal out of it. Just prepare as best you can ahead of time with family. Give them the freedom to get a wrong present. It’ll be ok. It’s Christmas after all. They only want to try to put a smile on their little faces.

Santa Claus

For the first few years, when your child is 3 – 6’ish, depending on how well they’re adjusting, Santa might be best left to the television screen or in a parade. Let’s face it, to a little child that is unable to look their own mother in the eye, Santa can be a tad… scary. Not so much scary in the sense that you or I think of being scared, but simply overwhelming. Santa is made out to be big, hairy, bright in his red suit and a loud boisterous ‘HO HO HO’… to a child with Autism, and many children in general really, Santa can simply be too much.

That’s when you get those pictures of children bawling their eyes out on Santa’s lap.

Don’t ever think that you’re child is missing out either. Really. Santa is no less magical when you see him on a parade float or performing magic in a movie. Santa is that overwhelming for a reason. Every child loves Santa from a distance. It’s the close up that is iffy.

Sacrifices

In the end, it all boils down to some small sacrifices. You will likely be leaving early before the music gets loud (or the people do), plus, your child likely has a very strict routine making bedtime a necessity. You’ll likely be missing out on a meal or two here or there through the holidays as you stay with your child, or console them, or take them home… you’ll likely be missing out on great presents that are too much for your child to handle, you can’t put up the decorations you really want to, just in case.

It all sounds pretty brutal and if it’s all stuff that you really love about the holidays, then I’m sorry, it will be brutal.

But I would like to think that these sacrifices, even if tradition or you just really want them, they’re small sacrifices to make.

A couple of years without tinsel and you’ll wonder why you ever used it. A couple of years of telling family members not to feed your child and they’ll get it. They’ll likely even learn what foods they can feed them that you gave them last year.

A couple of years and your child will be able to handle the lights and sounds better as they mature, so it won’t be so bad. Their bed time might even be later by then.

If you can avoid a meltdown or two simply by being prepared, getting out earlier than most, educating family, having a plan for safe zones or times to leave….  it’s so worth it. Not just for you but for your dear children. They don’t want a meltdown at Christmas any more than you do. After all, this holiday is for them, the magic is for them.

I would love to hear about tips/tricks that you’ve learned through out the years to make Christmas a little ‘safer’ for those with Autism in your family. Please feel free to share.

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