Tag Archives | birthday

Birthday parties, autistics, parents and choices

While many parents feel a great deal of pain in accepting the reality of a birthday party-less life for their autistic child, I have found that there are in fact some parents, a small number, that just don’t seem to get it.

The usual problem


birthday party
The problem that most autism parents face is isolation… that feeling you get when your child is never invited to birthday parties. The parent feels this through osmosis, meaning, they feel isolated because their child feels isolated. They know that the question is coming one day: “Mom/Dad, how come I never get invited to birthday parties?”

It’s a terrible feeling, and not just because it is saddening, but it’s also maddening. Because deep down, you know the reason. In fact, in a way, you probably don’t even want your child to go to those birthday parties. So loud, so bright, so much excitement, socializing, awkwardness…. yes, for many children with autism, it’s far more a nightmare than a dream and yet… the child doesn’t know that. They just know, or one day will know, that they are missing out on a world of fun.

And so, as a parent, you are left with a twisted up stomach, knowing your child feels alone, knowing your child feels like they’re always left behind, knowing that one day your child will ask you and knowing that one day, you’ll have to answer.

The unusual problem

In my son’s (Cameron) case, we don’t have the usual problem because of the great school that he attends. He is in a “regular school” but they have dedicated 5 classrooms to children with autism, which means that his friends all have autism as well.

So when his friends have a birthday party, he’s invited. Or when he has a birthday party, he has friends to invite. It’s actually pretty awesome in many respects because, not only are they not missing out, but they’re gaining those valuable party skills that they’ll need in college (hey, I can dream, can’t I?).

Here’s the thing… even though the other kids in all of those 5 classes have autism, not all of their parents really “get it”. What I mean is, they don’t realize how lucky they are to have their kids going to birthday parties.

The problem that I face, is whether or not to invite certain other autism children from those classrooms. They’re the ones that easily meltdown, easily get aggressive, have little verbal ability…  you have to understand, they’re great kids and I love to see them when I stop in at the school, but it’s obvious that they will need some extra help and attention at a place like a birthday party.

What I expect, and this is probably where I am going wrong, is that their parents would understand this and do something as simple as… stick around. You know, go to the party and be there with their child to help out should a meltdown occur, to say to me “oh, don’t do that because my child doesn’t like that” or “my child can’t eat that”…  stuff like that. I don’t mind changing things up on the fly, I’m an autism parent too!

But they don’t do that. They leave.

And to be fair, I’m not talking about the parents who honestly and truly have something they need to do, like work. But the ones who see it as a break…. a chance to be free.

It’s not a chance to be free. It’s a chance to learn valuable socialization skills. It’s a chance to do something that many other children with autism can not. And this parent is taking it for granted. They’re taking advantage of it.

What to do?

So at my son’s next birthday party, I have a choice to make.

Do I invite that child even though I know that things could be… well, let’s just say, more of a struggle?

Should the child miss out because of their parent? Should the child be punished? Or, would it be more of a punishment to actually invite the child to a place that he/she won’t be able to cope with? I mean, if I don’t invite the child, the child stays home with their parents, where they’re comfortable and at ease, right?

I’m not really sure what the right answer is… all I know is that it would be so much easier if the parent just took it more seriously. If the parent would see it for what it is.

To those parents:

Don’t make me have to choose whether or not to invite your child just because you can’t be bothered to stick around.

Birthday parties aren’t the same for you or I, compared to “other parents”. Not for the person throwing the party nor for the parent of the child that is invited.

I’m sorry that it’s not happy, fun, break time for you like it is for other parents. But that doesn’t mean that it can’t be a really great time.

You need to step up.

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What a difference six years can make

Yesterday was Cameron’s birthday… the day he was born… 6 years ago. I originally started writing this post yesterday, to be posted on his birthday but we did so much the whole day that I never did get that chance.

Even though he’s taller than many nine year old children, he’s still and always will be my little boy.

If you have a few minutes, I’d like to give you 6 years.

Once upon a time, I think it was a Thursday…

cameron 0 days old

Cameron - 0 days old

Showing up at the hospital at 8am on the 27th, my wife was “induced” at 11am… wait, wait, wait, push, push, push… my beautiful little boy was born 14 hours later, after 1am on Thursday morning.

That whole first year was amazing… having this little baby sleeping on my chest as I lie on the couch, feeling his little fingers grab onto my finger.

It was everything that parenthood was meant to be. Even the 3 hour feeds all day and night. Friends and family would look at me with this wide smile, sarcastically asking how much sleep I was getting or how tired I was… to their disappointment, I was more than happy with how it was. I don’t even remember how much sleep I got, all I know is that I would have been happy being awake for the whole year… so that I wouldn’t miss a thing.

I loved it.

Enter the villain of our story

first birthday - cakeOn Cameron’s first birthday, my wife had this wonderful vision of a smashed up birthday cake all over the place. She had one made with 2/3 icing and only 1/3 actual cake… this makes it easier to get little fingers into and spread around.

But that didn’t happen. It turned out that we had the only little boy in the world (or so we thought at the time) that didn’t like to get dirty. My wife took his hand and buried it into the cake, which fascinated Cameron but again… it wasn’t what we had hoped for.

With the help of some off camera funny faces, we were able to get the picture that we thought would make it all… “normal.” It was what we had to do to get what we wanted. Not what he wanted.

On top of that… his entire first year was without any words, toilet training and without any more snuggling on the couch together.

His first year, he had to spend a good 20-40 minutes with me on the couch at the start of each day or else he’d be upset.

That hasn’t happened since.

The battle begins

After Cameron turned 1, he spent most of his time separating blocks by colour, lining up cars, flipping them over to spin the wheels, doing his Thai-Chi and other very unusual and repetitive behaviours.

I spent a fair portion of that year doing research and when Cameron turned 2, I asked our family doctor for an assessment.

He told me that Cameron was a bright boy, that he was likely just going to be a late talker and recommended we just wait.

We respected his opinion but insisted anyhow… 6 months later, I was in Toronto with Cameron, visiting a hospital.

Cameron in the news

Cameron in the news

During Cameron’s assessment, Cameron shocked me. Almost even worried me…. he spoke!

The doctor took out a little bottle, a little wand and filled the room with bubbles. To my complete and total surprise, Cameron said “bubbles!”

To be perfectly honest, and the reason I say it worried me, was that this.. of all times, would be when he speaks. That these people would look at me like a neurotic parent that was just wasting their time or worse, making things up. See, I had told them that Cameron can’t speak. He just proved me wrong… right in front of them.

How embarrassing! Wonderful… but embarrassing.

It turns out that I didn’t have anything to worry about because they diagnosed him with PDD-NOS, on the Autism Spectrum. One word certainly isn’t enough to fool a doctor out of a diagnosis… I know that now, I didn’t then.

Fast forward a bit

I’ve written previously about the 3 year wait lists we were put on, the $150/hour speech therapy appointments… how my wife took it upon herself to learn the treatments and therapies so she could do it at home…  I’ve even written several times about how we gave up our house, everything we had and moved pretty far in order to get Cameron into a special school where he could excel rather than regress… so I won’t repeat it.

I will, however, tell you about something amazing.

When Cameron was diagnosed, despite having said one word… they told me that it’s entirely possible he might never have “normal speech” and even if he does, it’s even more likely that he’ll never be very good at social interaction and communication.

We were told not to be too disappointed or hard on him if he just can’t grasp toilet training.

Essentially, we were told not to expect the worst but to be prepared for it. Cameron may never progress, he may progress and then regress… anything was possible.

Cameron proved them wrong. Not us, Cameron did.

Truly inspirational

Cameron iPad

Reading Cat in the Hat

I will never deny that my wife and I have done a lot to get where we are.. we’ve never given up and always tried our hardest. But the truth is that the real person responsible for where Cameron is today is Cameron.

At 6 years old, Cameron is reading Cat in the Hat books himself, he has friends, he’s doing well at school, he can ride a bike now (for the most part), he can finish video games, he speaks in complete sentences (he even says “You and I” instead of “me and you”!!)… he’s doing exceptionally well.

That’s not to say that he doesn’t still have his issues… his senses are still very sensitive, he still needs his specific diet, he still gets overwhelmed quickly and needs quiet time… you get the idea.

I try my best to support people, give them positivity and even inspire people as best I can but the honest truth is that the real inspiration is Cameron.

It’s just simply amazing to think of how well he’s doing despite all of the things I was told almost 4 years ago. He’s overcoming obstacles, he’s smashing through barriers. He’s never giving up.

I don’t just say that as a proud parent.. if you ever get to meet Cameron, you’ll see it in him.

Never Giving Up

As soon as I could have actual conversations with him… I would ask Cameron “What do you do when you fall down?” and his very simple answer was “get up”.

I asked him that at least 2 or 3 times a week, for over two years now. Half the time he answers on auto pilot (without thinking about it), the other half he is always happy to answer because I always praise him so much for being right.

He didn’t learn that from me. I learned it from him. All I ever do is remind him.

Cameron didn’t learn to ride his bike until he was 5… he started learning when he was 3. It took a long time but he never gave up. Cameron had a very hard time playing any sort of video game due to poor motor control but a year later, he could win most races at Mario Kart Wii.

Reading, writing, math, puzzles… it never mattered what it was, he would do it every day, on his own, never willing to give it up.

It was really quite easy for my wife to sit him down to learn the alphabet or numbers or how to do tasks because he was always eager to learn them and no matter how hard it was, he was always eager to keep doing it over and over.

And if there is something he can’t do, if a bad guy in a game can beat him… he gets mad. Not meltdown mad… just… mad. When that happens, there is no turning off the game, there is no doing anything else. It drives him.

No matter how inspiring people can be, no matter how much wisdom they have to share with me… no one inspires me as much as Cameron does.

My hope is that one day he’ll be able to look back on this blog and anything else I do and realize how much he has done for me. I’m so very proud of him.

Cameron - 6 Years Old

Cameron - 6 Years Old

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How my wife planned the perfect birthday party

My son’s 6th birthday was the first birthday that involved friends from school, not just cousins and other family members. This meant that there would be other children there with varying severity levels of Autism as well as some children that had no special needs at all.

This presented a unique problem. How do you keep excitement up and keep it under check at the same time?

The Location

bday 6 location

Can you get more perfect?

The first challenge was the location. Cameron wanted his birthday at home where he’s comfortable, all of his toys and games are and he can feel like people have to come to him. That’s actually pretty important.

However, it’s not very practical. First, our house is not that large and it’s not that clean. Cleaning it before hand and afterwards as well is a daunting task on top of the rest of the preparations… and if anyone decides that they’re not in a rush to get home, we’re stuck with them. Not that we mind, we love them all dearly… right?

It turns out that in town, there is a very large park with a playground, water park area and lots of land to play around in… but it’s always crowded. That wasn’t a very good choice either but, outside of town, there was an identical park only smaller and it was along side a lake, which meant beach area. So, playground, water park, some space to play in but not as much and a beach… to top it all off, literally, near the water’s edge but not too close was a roofed in area where we could sit, organize and even play. This little area was surrounded by three picnic tables.

Best of all? The park is almost always empty, or close to it. Being outside of town, it was rarely used… even on hot days.When we got there to set up, there was only 3 other people in the entire park.

The Food

bday 6 food

Gluten free - looks great!

Being that there were special diets for some, not for others and pretty much everyone had things to do on their own, my wife planned the party to run from 1pm to 3pm. This meant that people could eat lunch, come to the party and be home before dinner.

Some people always tend to miss out, or get a bit hungry while there, she made sure to bring a couple of containers with grapes, strawberries, cheese, gluten free crackers, a bit of lunch meat and some chips. Not all of it was eaten but quite a few people did snack so it worked out perfect.

As for the cake… she made a small’ish cake the week before, as it was the first cake she had ever baked. She bought the ingredients and mixed it and made it herself, first time ever. And not just that, it was gluten free… even the icing.

So it went well but not perfect but that’s why she did it… to practice. Then, the day before the party, she made two of those cakes, put them side by side, iced it all and put on some decorations.

For the actual design, she used Photoshop to put together a very nice design with Cameron’s favourite Mario characters, printed it at Walmart, had a bakery print it onto edible rice paper and stuck it on top of the cake. Presto… a very lovely, very yummy looking cake. It was perfect.

The Games

bday 6 games

Fun in the water

We had one child that preferred to be on his own although we did catch him playing one on one with another child for a little while, some children were all over the place and from time to time, some children needed a little alone time.

This can make organizing games very difficult and we even had one adult at the party ask us why there were no games.

Here’s the thing… at a park that has a beach, water park, playground and lots of room to run around.. you don’t need games. You can have a few children racing to the playground and back, a couple others playing tag and a couple others playing cars at a table. Everyone’s happy!

Did any of them miss games? Were they upset they didn’t get to pin a tail on a donkey? Not in the slightest.

Cake and Presents

This turned out to be quite tricky but for the most part, the adults all backed up and let the other children crowd Cameron as he opened his presents. They all got to sit at the table to eat cake and they all got to stand up at the table and hover over Cameron as he opened presents.

We were a little concerned that Cameron might feel anxious about it but he never did and the other children really loved that they could get the best look possible. It meant for some tricky positioning to get the photos I wanted and from time to time, we had to ensure that they didn’t start getting in each other’s way or pushing but for the most part, children do remarkably well when given a little freedom.

Coming to an End

bday 6 end

Tyler - little brother

After the cake and presents, it was quite amazing to see as one child wandered off to a bench to stare at the lake, 2 other children went to another part of the park to see ducks in the lake, 1 child went off to the waterpark, 2 to the playground and the rest into the roofed in area to play with some new toys.

They all had different ideas of what to do and some needed some space, some didn’t… the adults were able to clean up a bit and talk… it was perfect.

This meant that the children were all able to cope well with going home and hopefully even do well that evening since they were able to release some anxiety and stress on their own, on their own terms.

If we had the party in our house, that would not have been possible.

It was at this point that some adults began to question what was happening, why one child was on his own, why we let them all go off… and no, it’s not frustrating having to explain.

It was actually a perfect example and a great opportunity to explain one of the more important aspects to Autism… letting the children have their freedom. Despite their age, we have to respect that they know exactly what they’re doing. They know what they need.

That Evening

bday 6 cameron

Cameron - Happy Birthday!

As Cameron opened his presents to play with, he really had no problem at all sharing with his little brother. Much to our dismay, as well as Cameron’s, his little brother proceeded to break toy after toy… after toy.

Personally, I’d have been furious but not my Cameron. He took them away from his little brother but he’d tell him that it’s ok, it was an accident and move on to something else.

He was completely understanding and calm the whole time.

To me, that’s a true testament to many things, including what a great kid he is but also to what a huge success his birthday party was.

Such a huge day, in a big park, with a hot sun, with lots of friends, lots of sugar, exciting presents and so much more and even when faced with what should have been meltdown inducing on many levels, he was calm and happy.

Today is the day after and while we have a strict “no video games first thing in the morning” rule here, I was more than happy to let him play one of his new video games when he got up for being such a super trooper the whole time the day before.

He earned it.

And to my wife, it couldn’t have been any more perfect.

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A special request, an Autism Birthday Wish

birthday cupcakeMy birthday is coming up, June 5th, and I wanted to ask a special request of you.

No I don’t want presents or money. I don’t really even want anyone to know that it is my birthday to be honest. I’m quite content with just going about my business.

However, there are a few things that I’d like for you to do for me, if you’d be so inclined. I’ve listed them below and I ask that you do one or more or all of them.

Donate to the charity of your choice

It would mean even more to me if it’s an Autism charity but it’s not necessary. If you have a favourite charity that improves peoples lives, that really helps people and is working hard to make a real difference, please make a donation.

I’m not asking for any specific amount, nor for you to do it in my name. I’m not even giving you a charity or list of charities to choose from. But to just do it because I asked you too.

Volunteer your time

Much like charity, donating your time is a wonderful way to help out and make a difference. It need only be for a few hours, it can be in any place that works to benefit people.

Just set aside some time one day and dedicate a little time to volunteering at a place that will have you. It doesn’t even have to be on June 5th. You can do it one long week-end where you get an extra day off anyhow.

Don’t let the negativity out one time

This is something that I practice as much as I can and it really does make a difference in your own personal life.

What I do is, each day, I catch myself before I say, write, share or even think one negative thing. Whether it’s me thinking that I can’t do something or being upset with someone else for what they said or did… I stop myself, realize what it is that I’m doing and stop myself.

Instead, I think I can do it, I am not here to judge and I don’t have to get into an argument just because someone on the internet was wrong (that one is hard!).

One time, when you feel down on yourself or get mad at someone in the next few days, or each day if you can…. think about me and think about how I asked that you not do it.

Conclusion

I don’t need anything for myself. What I really want is for people to stop fighting, for people to work together and for people to pitch in a few of their off hours or a little money.

You don’t have to tell me you did it and you don’t have to do it in my name. Just do it and feel good about doing it.

That’s what I like to see most.

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