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Now I lay me down to rest

By on November 4, 2010 in Autism

My wife often suggests new blog post ideas, which is great because sometimes I’m simply fresh out… this time, she suggested that I blog about something that she and I do every single night. It’s just something that we do and have always done, something I never really put that much thought into but after she had the idea that I blog about it, she wrote it out rather nicely:

For me I go into their room before I go to bed (about 2hrs after they’ve fallen asleep) and I talk to them. I whisper encouraging words, tell them what they did well that day, tell them I love them, kiss them and snuggle them back into their blankets. I never ever skip a night unless they are spending the night at my moms or something and I physically can’t. It’s something that allows me to see them in their most precious moments and gives me time to focus on their positives even if it’s been a bad day. It helps me reset for the next day. I started doing this when Cameron was a baby and have kept it up all this time.

It’s true, she never misses a night where as I may from time to time. She’ll even get in there even if I already have. But we both pretty much do the same thing. We both tell them they’re “awesome” or that we love them, we both kiss their forehead or cheek… we both just need to check on them each night.

After my wife mentioned it, I got to thinking about it, and it reminded me of another article I wrote where I explained that I believe a child with Autism takes in a lot more of their environment than a child without Autism would.

Shhh... he's sleeping

Shhh... he's sleeping

I started to think about it, I came to realize that I was putting my own methods into practice… as was my wife. I mean, I’m fairly certain that the whole “play classical music while they sleep” thing works on some subtle level for all children but for those where Autism is involved, I think that they absorb that even further.

We honestly believe that telling him that he is a good boy, that he’s awesome, that he makes us proud, that he did certain things very well… all these things add to who he’ll be the next day and for the rest of his life.

We certainly do not exclude his little brother either, even without Autism. Because he deserves the same attention and love and words of encouragement. He might not take in as much as his older brother, or maybe he does… it doesn’t really matter.

It’s a very small thing, it takes a minute or two, it’s when we have nothing left to do but to crawl into bed anyway, but I think… we both think… that it’s extremely important. That it’s something we must do because they deserve it.

And even if it turns out that they never actually take in a word, that it never does have any effect on them what so ever, it’s still worth doing. It’s still important. It’s important for us, not just to us.

Do you do anything like this? Do you think children can hear/feel these things even though they’re asleep?

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Halloween and Autism, scary for all the wrong reasons

By on November 3, 2010 in Autism

Halloween is meant to be a wonderful time for children, they get to go out for a little while and do nothing but collect free candy from the whole town just by saying “Trick or Treat!”

As parents of children with disorders or disabilities, we know all too well just how difficult this “wonderful time” can truly be.

Too Little Fear

Many children with a disorder, including Autism, have far too little fear when something catches their focus. When magic takes hold and the entire event seems like a dream come true, a child will dart off into a street, jump into the middle of another group or just take off to any random stranger without giving anything a second thought. How could anything bad happen? It’s magic candy night!

Children with Autism have been known to do these things on any given day, much less when there’s lights, sounds, candy, kids and more all around them.

There is a LOT of safety concerns for parents to be aware of and to go over with their children on Halloween as it is, when you mix in Autism into a child’s list of concerns, you quickly become aware of just how much of a hand full this wonderful night might just be.

Some parents choose not to go out at all, which is a shame. But I can understand why. I wish there was some way I could find the extra eyes and arms they need to go it out there safely because it is something that they shouldn’t have to miss out on.

Too Much Fear

halloweenIt’s kind of funny that we have the scariest holiday so close to the happiest holiday but as it stands, Halloween is meant to be scary. It’s meant to be fun as well but the premise is that you scare each other… scary pumpkins, music, skeletons, bats, vampires, ghosts and the occasional over enthusiastic house owner that jumps out at you to scare as many children as they can.

That kind of fear is hit or miss with children as it is but for children with Autism, a good scare can last with them for a very very long time. In fact, many times, it can lie dormant in them and manifest itself later. A child may start having bad dreams or be afraid of going somewhere that reminds them of the place that scared them… and it will be so long after the fact that neither you nor even your scared child will even know why they’re so scared all of a sudden.

Fear and Autism, not a healthy mix in most cases. But again, Halloween is meant to be fun as well. So depending on your child’s age, maturity, severity level and so forth, maybe some fear is better than none, so long as it stays fun.

Just be mindful of what might have a lasting effect and steer clear of those houses if you can.

A Stimulation of the Senses

Like the funner holiday (Christmas, for those of you wondering to which holiday I was referring to earlier), Halloween is a very sensory experience with flashing lights, candle lights, music, mechanized monsters, flowing spiderwebs in the wind, people scaring you, kids walking all over the place, cars driving by or parking and waiting…

There is just so much going on all the time that it’s overwhelming sometimes for the best of us. Especially when you get those neighbours that like to compete, but that’s a whole other story.

The fact is that when a child with Autism walks up to a well decorated house, it’s an overwhelming experience but most will likely do it because it’s new, exciting and there’s candy behind that door. But then you walk away and go to another house that has an entirely different experience, and then another, and another…

How many houses your child can stand that sort of thing is obviously going to be very different with every child but don’t be surprised if it’s a low number. It’s a lot to take in.

Coping Mechanisms

I’m not going to go into all the safety tips and ways to deal with a successful Halloween for two reasons. One, I don’t know them all and two, if I did, it would fill a book.

However, I will tell you that there are a few things that you can do and even a few things that your child will likely figure out for themselves to do that you may need to recognize.

These are some things that happened as my family went out this year.

  • One family member (grandfather) drove along with use in a vehicle. This gave us a place to take our children for a break. Nice and warm, a place to give the senses a break, a way to let their legs relax a bit.
  • Give them a goal. We did a couple of streets and then a street that looped back to the first street. He was able to see the houses on that loop and the end point so my boy could tell exactly how much longer he’d have to get through it. He still asked at every house if we were done but never ever complained when I said “not yet” because he already knew that.
  • Stimming. Yeah, Autism’s favourite past time is something that a child uses to cope with overwhelming senses and in this case, is probably going to show itself in some way or another. In my son’s case, he began counting everything. He counted the pumpkins, the lights, the houses, the cars, the doors… he counted and counted and counted. It wasn’t arm flapping, or spinning, or hitting anything… it was just counting. And it soothed him.

Next Year?

I think it’s important to learn from every experience and as with every holiday, you learn what works and what doesn’t. I ask that you please don’t decide to sit it out though, even though I do understand why you would.

The only way you can learn for next year is to do it this year and skipping even just one year will give you a huge gap in not just understanding what works and what doesn’t, but your child will have that large gap as well in not knowing what to expect, what it’s about or what to do.

A child that never does anything will never be able to do anything. Next year they’ll be older but they’ll still be lacking that experience.

Read up, do your research, ask for help.. even if it’s from school or church, get some extra eyes and ears out there, maybe a community vehicle.

There are ways to do it and there are things to avoid but if you pay close attention to your children, close attention to their surroundings and be prepared, it can go well.

Oh, candy is what comes after and that’s a whole other discussion for those of you on the various diets. I could write for hours about that. But let’s end it here. I hope you had a great Halloween and learned some new things for next year!

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Autism siblings – living in a different world

By on October 27, 2010 in Autism

My son Cameron (with Autism) is 5 now which means that we’re starting to get him into programs that will benefit him, such as dance, bowling and gymnastics. The last two week-ends was gymnastics.

The program putting this on for the Autism children didn’t expect a big turn out and so they invited siblings along as well, which is great for us because Cameron’s little brother Tyler (without Autism) is just about 3 years old and eager to do what his big brother does.

It turns out that the community was quite eager for this program because instead of 8 children, they got closer to 25. So they had to do some quick shuffling and splitting into groups and such. However, this also meant that they had to tell everyone that siblings are no longer welcome.

Now we’re faced with a 3 year old that absolutely loves gymnastics and asks every single day to go back and yet, he can’t go back… but his older brother can.

It’s rough as a parent when you have to break a little heart.

apples and oranges

Comparing my boys can be like comparing...

But I know that this is just the first of many many times that this will happen.. because Cameron has Autism and Tyler does not. This means that, for the most part, the rest of their lives will have this kind of separation. One or the other will almost always be excluded and it will always be hard for them.

One thing we are lucky about is that we found a school for both Autism students and regular students. They’ll be on different floors but in the same school.. and being more than 2 years apart, they wouldn’t really see much of each other anyhow. But it’s still great knowing they’ll be in the same school anyhow.

For many parents, that’s not the case however. Their children get split up and they have to choose between therapy programs, such as ABA, or home schooling. Some even are forced to put their children with Autism into regular school where they have to fend for themselves as best they can.

In any case, this usually results in even more separation…. where siblings no longer get to be together or share in their experiences.

Now, most parents would tell you that it’s rather normal, simple age differences will do that, interest differences will do that… so on and so forth. And for the most part that is true. But until you actually have one child with a disorder/disability and another without, you never truly realize just how much of a huge difference it can make.

Yes ages and interests put children on different paths but not nearly as much as you might think until you are forced to have them doing different things at different times.

And so begins a long journey of disappointments and heart aches where two brothers will forever be worlds apart. The saving grace being that at the end of the day, they’ll return home to the same house with the same family and share in the things that they both enjoy here.

One day big brother will look after his little brother and little NT brother will look after his big Autistic brother and despite being in two different worlds, they’ll be there for each other. At least, that’s what I hope for.  But until then, they need to learn to watch each other go off and do something that they wish they could do too.

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My tips for using FollowFriday effectively on Twitter for Autism

By on October 22, 2010 in Autism

FollowFriday is a Twitter tradition whereby, every Friday, people ‘recommend’ other Twitter members to follow. For example, if I put #FollowFriday (or #FF for short) and the name of a Twitter member, that means I recommend that you follow them too.

I put quotes around ‘recommend’ because it’s evolved to become more of a ‘shout out’ thing, where I’ve noticed many people just list celebrities/influential people, or friends/family.

If you are involved with Autism in some way, I want you to hear me out because from here on out, I refuse to give shout outs… and I really don’t want to offend anyone along the way.

Autism, like any other cause that we believe in, is very important and very serious and it’s for this reason that, even though I happen to be quite proud of my sense of humour and ‘go with the flow’ nature, I take some things quite seriously. This FollowFriday tradition is one that I’m going to take more seriously from here on out.

follow friday

#FollowFriday or #FF

The Real Value

There is a great site (FollowFriday.com) which actually ranks people based on the number of FollowFriday mentions they get. That’s not what is important. What is intriguing, to me, is that they do NOT count anyone’s mentions if they mention more than 50 people.

The reasoning for this is quite brilliant, in that, if you are recommending more than 50 people to follow, you don’t really mean it. You could have a million people in your list and you should still be able to narrow down real genuine serious recommendations for others to follow to less than 50.

This gives your recommendations value. REAL VALUE.

If someone recommends 3 people to follow, and they have a list of 20,000 people… those are 3 very special people! Wouldn’t you agree? They have a lot of value to be singled out and displayed to the other 19,997 people.

If they were just 3 people included amongst 50 other mentions, their value not only diminishes but disappears completely since not one single person on the entire Internet would sift through your 50 mentions and try to find the ones of real value.

In the case of Autism, or any cause, this is especially important and critical. If I go recommending 20 people that are funny and 5 people that are genuinely great information sources on Autism, the message will get lost and the value gone.

Making your choices mean something

It all comes down to building a stronger community, that doesn’t mean that I intend on excluding people. Don’t get me wrong. I would love to FollowFriday my entire list but I know full well that it will mean getting NO CLICKS instead of more. As I said before, not one person would spend the time weeding through the mess to find the value. And so, it would accomplish nothing.

Carefully selecting the truly worthy members of your list and recommending those few will ensure extra exposure, added value and more follows which will help to build a stronger and even larger community.

It is for this reason that I have decided to drastically cut down the number of FollowFriday mentions that I will make each Friday. I really do not wish to offend anyone by not mentioning them.

There are simply far too many people that I actually do want to mention. But I can’t or else I do more harm than good.

Some tips or guidelines, not rules

In summary, I have made this list of tips for effectively using the FollowFriday tradition in regards to the Autism community:

  1. Limit yourself to a finite number of people each week. Maybe 10? 20? Lower if possible. And stick to it. It forces you to be extra picky.
  2. Make lists, use them, one per week. Lists such as parents, charities, information, merchandise, etc… you can visit one list each week and pick the top members from them to FollowFriday. This way, each week you feature categories of members, allowing you to cover more people over time since you likely won’t repeat a mention for several weeks.
  3. Keep a notepad txt file on your desktop and keep tabs on someone you’ve noticed with really good information, especially inspiring, good blog posts, etc for that specific week. Give that person a mention that Friday. They’ve worked hard, they deserve it. Erase after and start it fresh on Saturday.
  4. Pick people that your followers would be genuinely interested in. Not just family or friends. They might be upset that they recommended you and you didn’t return it but if you want this to actually mean something more than giving a friendly shout out, they’ll understand.
  5. FollowFridays don’t have to be Friday exclusive. It’s nice to be included that one day, but it means even more to get a random “Wow, you really have to follow @twitter_member, they know a lot!”. It means more to that person, it means more to your followers.
  6. If you are making more than one tweet for your mentions, include a one-two word descriptor to tell people who or why you recommend them. Most of my FollowFriday mentions look like this: “#FF #Autism Charities: ” or “#FF #Autism Parents:”. This allows people the ability to sift through them and look for the people they’re most interested in.
  7. It’s not a competition! People put value on the # of followers that a person has but I’d gladly put my 1000 followers up against someone else’s 10,000 because almost all of mine discuss Autism. This gives my followers a lot of extra value to me. They mean everything to me since Autism is my world (at least on Twitter anyway).
  8. Since it’s not a competition, don’t use those #FollowFriday list building tools. Some are clever and try to find others that you’ve mentioned a lot or that have mentioned you a lot… but they can’t really judge true value. They can never replace your own ability to place a desire to share a follower with the world.

Think about it as a party and you’re making introductions. You don’t introduce random people to random people and you don’t introduce a person to other people when you know those other people won’t really want to meet them.

You introduce someone to people when you think they will have a mutual interest in each other.

So introduce me to someone that you think is someone that I’d want to follow and I’ll follow them. But don’t throw a ton of names at me because I won’t remember their names later.

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Is IBI right for my child? What is IBI?

By on October 21, 2010 in Autism

Intensive Behavioural Intervention (IBI)

IBI is the application of the science of ABA in an intensive manner. As a general rule, it is done for a minimum of 20 hours per week no matter the severity of the child.

This comes up right now, for my family, because it was almost 3 years ago that we were told that my son, Cameron, has Autism and it was then that we were told that he would be put onto a 3 year wait list for….  drum roll…. IBI.

TherapyThis is a big deal. One to One IBI therapy is the only intensive therapy funded by the Government of Ontario for children with autism. This means that it’s really the only option for parents that don’t have a lot of extra money lying around for therapy.

As part of the program, the child would be removed from their school for about 2 hours a day and put into a very intensive therapy session focused on key areas of development, ranging from being able to sit up to spelling out words on their own. The questionnaire was something akin to registering for the space program. A few hundred questions later and you’re put onto a waiting list.

Our 3 year waiting period officially came to term this month and we found ourselves at a cross roads of frustration as we are forced to weigh the pros, cons and opportunities.

3 years ago we found ourselves with a non-verbal child, not toilet trained, unable to do most things that a 2 year old should. His diagnosis put him at moderate – to – severe PDD-NOS. Finishing the check list found us answering mostly “no”s to everything and feeling very discouraged.

At this point, we took it upon ourselves (my wife mostly) to learn all we could learn about IBI and ABA… with every appointment, therapy session and meeting we had with people, we took away binders, books and pamphlets of information as well as all that they could ‘teach’ us.

The thing I find most frustrating, and what I’ve been repeating since the very beginning is… if a teacher, school, program, therapist, company, organization or government doesn’t offer all that you want or need, you as the parent MUST MAKE UP THE REST. Do not rely on anyone or anything to provide for your child all that you need.

So, armed with all the information we could get, we began our own IBI/ABA program here at home… population 1. We worked (99% my wife) with Cameron every single day, even if only for a few minutes, an hour… what ever, we worked on his numbers, colours, shapes, holding things, using things…  all that IBI/ABA would have had him doing.

I introduced the Nintendo Wii (Mario Kart specifically) because it had just one button to press and just a turn of the controller and that’s it. It greatly advanced his gross motor skills.

All of this found Cameron progressing more and more and more. It wasn’t easy and certainly didn’t come over night. It also went hand in hand with everything else we could learn and try… such as the gluten free diet.

2 years later, Cameron was accepted into a wonderful school that has ‘regular’ children on the main floors and the basement dedicated to Autism. In a class with only a few others and many adults, he was further given the guidance and support he needed to grow and learn even more.

And now, he’s in school for his second year (senior kindergarten) and is now spending many of his days with the ‘regular’ 1st and 2nd graders because not only is he smart enough for it, but he’s getting to be social enough too!!

IBI came calling once Cameron’s name came up and we had to weigh our options. Would he benefit from getting more of what we started so long ago, or would he benefit more from the social life that he now had in school?

First, let me tell you, a lot has changed in 3 years. Northern Ontario had recently made a rather drastic (in my opinion) change to their program and now insist on full time IBI sessions, which means no more 20 hours… it would replace school completely!

The children in the IBI program here in this city are all quite severe and the only children that could possible be on the same level as Cameron are 9 and 12. Cameron would NOT relate to them at all.

All of this, however, didn’t impact our decision nearly as much as what my very clever wife had decided.

You see, this school that Cameron is in is so awesome that they have a 2 way mirror in it, such that any parents, at any time, can enter a private room and watch their children in the classroom without anyone knowing.

So she had the IBI lady come to the school and join her in that room to witness Cameron’s progress, they brought the checklist.

This time, all of the “no”s had become “yes”s… Cameron had surpassed all that IBI had to offer for him and in fact, would hold him back as he’d lose all of his social interactions, not just with other children with Autism, but with other children without Autism.

And so, at the end of their observations, even the lady from IBI had to agree that Cameron’s best place was in the school. That there wasn’t much that they could do to help him progress since he’s already surpassed what they cover.

That was what we really wanted to hear… that we were making the right choice and furthermore, that we had made the right choice all along.

Now the question is, is IBI or even ABA for that matter, right for you? Well, I guess that depends on what you would get out of it and what you wouldn’t. Also, you must consider if your child isn’t getting something out of it, can you do it? Can you find a way to compensate for it? Are you dedicated enough? Resourceful enough? Determined enough?

If your little one needs strict guidance and personal development, maybe IBI is a good choice. If your child need a social setting, then maybe not. For us, we feel that if we took Cameron out of school and put him in IBI for any period of time, it would be a huge set back once it came time to re-introduce him back into the social scene. He’d lose that ability to wait his turn, put up his hand, follow directions and seek out people on his own to play or work with.

Only you can know for sure, questionnaires and observation can only take a professional so far. You need to know how much further you and your child can go.

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