I have a post I’m writing about planning a birthday party for kids with autism. I’ve been writing it for a while and I’ll probably finally have it ready just in time for me to start planning my daughter’s party in April. In the meantime I’ll give you a hint on what not to do.

Children on the spectrum can be very literal. We all know this. They don’t understand idioms and slang. For those who have seen the Temple Grandin movie this was really well represented when we saw Temple’s impressions of what various sayings meant (animal husbandry, another door opens, get a hold of yourself, etc.).

The other things that kids on the spectrum like is things that are familiar and routine. This is one of the reasons I try and make sure that I serve food that seems to have universal appeal to kids on the spectrum or kids in general – pizza (of course I check for dietary restrictions first).

The one area where I have missed the boat TWICE is in regards to birthday cake. The first year I thought I would be smart and make cupcakes. This way the kids with poor fine motor skills could still eat their cake with minimal assistance. Then I thought I’d make the cupcakes in ice cream cones. Great idea I thought – they’ll be even easier to eat.

While they did go over well, there were a lot of kids who bit into their cones expecting ice cream only to get a mouth full of cake and icing. Not unpleasant, just unexpected.

Obviously I didn’t pay much attention to this because the next year I decided to make cake pops.  For those who are unfamiliar with cake pops, they are cake balls (cake crumbs mixed with icing) that are then stuck on a stick and dipped in chocolate.  I had the same idea….on a stick means easy to eat right?

They are very yummy, but to a child who was expecting a lolly pop, not a completely welcome surprise.  At the end of the party I found plenty of cake pops with one bite out of them as the children searched in vain for a real lolly pop.

In my desire to create the perfect party for these kids who never get invited to parties, and, let’s be honest here, make the other parents go “wow!”, I didn’t take into consideration the particular idiosyncries of the group of children attending the party.  I was in full on party planning mode, and while I did everything I could to make the party fun and accessible for these kids on the spectrum, I certainly dropped the (cake) ball in this area.

This year I will make a traditional cake that everyone can recognize.  I will cut it into slices and give everyone a plate and a fork and consider it a success.

Last Sunday 8 year old Robbie Woods Jr. got separated from his father while out walking on a trail at North Anna Battlefield Park in Virginia.  Robbie is non-verbal and he has autism.  He was found alive yesterday after 6 days. 

I think this is probably every parent’s worst fear, their child getting lost and being unable to find them.  For the parents of a child with autism it is their worst nightmare.

We can teach our neurotypical children not to talk to strangers.  We can instruct them on what to do if they get lost, whether it’s at a shopping mall or in the woods.  My six year old knows that if we’re out and he gets lost, he should stay right where he is and that I’ll find him.  I’ve taught him who he should ask for help, he knows his name, my name and our phone number.   I can’t teach these types of things to my daughter.

Thankfully she doesn’t seem to be a wanderer or a runner but that doesn’t mean we don’t have to be vigilant.  This became crystal clear the day when I was in the basement and when I came upstairs I found her on the front lawn.  All our doors now have alarms and/or child locks so this doesn’t happen again.

When out in public she tends to stick close but she can get distracted so we have to keep our eyes on her at all times.  We also know that complacency is our biggest enemy so we are always on alert.

If she were to get separated from us she wouldn’t know to stop moving.  She would keep walking, and walking, and walking.  She might sit down if she got tired, but she’d be up and moving again as soon as she was rested.  She also wouldn’t respond if someone was calling her name.  You could walk right by her and she wouldn’t acknowledge you were there.  And if by chance someone did find her, she would not be able to tell them her name, my name or anything else. 

There are a number of items currently on the market that parents can purchase to help alleviate some of their fears and keep track of their children.

Adiant Solutions offers a GPS locator bracelet that has a lot of different features like locking bracelet, email and text notification, real-time locator, etc.

The Amber Alert GPS system is compact and can easily be clipped onto a backpack or threaded onto shoe laces.

If you’re planning a trip to an amusement park or the zoo, Safetytat might be something you want to consider.  While not a locator it allows you to “tattoo” your child with your contact information in case your child gets lost.

The Mommy I’m Here kid tracking device is originally designed for parents of toddlers but could definitely be useful for ensuring your child with autism doesn’t wander too far in busy stores or crowded places.  It has a 150 foot range and alerts an audible signal when your child is more than 15 feet away from the transmitter.

Of course, none of this of any use if your sensory defensive child decides to take off their shoes or their bracelet.  Or if your child decides to go for a walk at 3 am in their pajamas.

So for now I’ll just keep up my hyper-vigilance and sleep on the couch by the front door….just in case.

I’m sitting here watching my daughter swim and play in the pool. The day is cloudy and overcast but that doesn’t stop her. I think she likes it because she has the pool to herself.

When we are looking at houses we’ve started looking at houses with pools. I dont know if I really want the expense and upkeep of a pool…but when I watch her swim and hear her laugh, its moving pretty high up the criteria list.

So we are playing kind of fast and loose this summer. We have so much to do with getting the house ready for sale and how my daughter is just hanging around the house…

She is definitely feeling out of sorts with everything that’s going on. Last week she went and got her binder full of picture cards…those cards we use for visual schedules that haven’t seen a lot of action for the last couple of months (or even longer).

She flipped through until she found the ones she wanted, put them on a board and said “I want schedule”

I was discussing my daughter with my BFF (who is ABA Trained).  We were talking about ABA theories and practices and she said something that has stuck with me.  She said I can’t fear the tantrum. 

Parents with kids on the spectrum will understand what I mean.  Hell, most parents understand it.  You know, those things we think about doing and decide not to do because it’s not worth the meltdown that will occur.   It starts out small…like avoiding the grocery store, eating at home, avoiding social gatherings.  You tell yourself it’s because why make your life more difficult…it’s difficult enough.  And then, without you even realizing it, it starts to happen more and more.  You’ll make chicken nuggets for dinner because you know it’s one of the 4 foods your child will eat.  You let your child watch the same show over and over because it makes them happy and keeps them quiet.

You know what I’m talking about….we’re all guilty of it.  For parents of kids with ASD it’s a survival mechanism.  We never know where and when these tantrums are going to occur so we try to avoid situations that are going to cause meltdowns.  We think we are being proactive but are we?

One of the hardest lessons for me to learn was that to my daughter EVERYTHING was a pattern or a routine.  The first time you take her to the park, that park is what she knows.  The second time you take her to the park it becomes The Park.  There are no other parks except that one.  And because you know that is The Park you go back there, constantly reinforcing her routine.  

At this point it becomes a really hard habit to break.  Going to a different park results in tantrums of epic proportions.  Screaming, crying, self-injurious behaviour.  Because you are so horrified that your child is behaving this way you either only go to The Park or you stop going all together.

The other big thing is consistency.  If I say we are going to do something, I have to do it, regardless of the tantrum that occurs.  Because if we don’t, all we’ve taught her is that if she throws a big enough fit she won’t be asked to do something she doesn’t want to do.  This was a really hard lesson to learn, for all of us.

A good example of this occurred a couple of weeks ago.  We were at the trailer and were invited to go out on my brother’s boat for a ride.  I knew that once my daughter was on the boat she’d enjoy it.  And I knew she’d enjoy our destination – the sand bar.  But getting her there was hell.

She kicked and screamed and refused to walk to the boat.  She wanted to go swimming – which to her meant going to the pool.  I told her that we’d go swimming after the boat ride.  I prepared a visual schedule showing her that after the boat ride there would be swimming but the whole process was awful.  I tried giving her the iPod to watch Dora while we walked to the dock, hoping that the videos would distract her but it didn’t. 

When we got to the boat she wouldn’t get in.  We ended up having to pick her up and forcibly put her in the boat.  When she was in the boat we realized that the iPod didn’t make it.  We looked in the boat but never found it so we assumed it went over into the lake.  It was an expensive lesson but I knew that even if we only drove the boat out of the slip and then back – I knew that I had to follow through with our schedule, no matter how painful it was. 

As soon as the boat started moving she loved it.  She loved the wind in her face, the bouncing and the waves splashing along the sides.   She had a great time at the sand bar too.

It’s hard not to fear the tantrum.  I know that.  One of the hardest parts is knowing that people are watching you and judging you.  They are seeing your child at their worst and you must have very thick skin.  I won’t lie – people’s reactions to her behaviour still bother me. 

But I know that in order for her to be successful and learn how to deal with change she has to experience it.  And I won’t fear the tantrum just because it makes other people uncomfortable.  And I certainly can’t fear the tantrum because it makes me uncomfortable.

Ask any mother about food preferences and they’ll all have stories about how picky their children were.  Oh there are some kids out there who will eat anything and everything, but there are plenty that turn up their noses at anything and everything you put in front of them.

My daughter is pretty picky.  It seems to go hand in hand with ASD and sensory issues.  She has the food she likes to eat and she’s hard pressed to try anything new.  She also goes through stages where foods fall in and out of favour.

One thing that has never changed is her love of popsicles.  Oh my goodness, she loves them.  It’s definitely a sensory thing because she loves the cold hard crunch.  She’ll even ask for the ice in your drink (or steal it if you’re not looking).  Over the years we’ve tried many different brands and flavours.  We went through a year or so where we made our own but when she’s on a binge she goes through them faster than we can make them.  We’ve found a brand we like that is natural flavours, no sugar and no additives so those are a staple in our freezer.

But she won’t eat the orange ones.  Oh if she HAS to she’ll take one.  There is much crying, head banging and shin kicking but she’ll take it.  She’ll hold it and eat some of it and eventually, hours later, I’ll find it lying in a wet syrupy puddle somewhere in the house.  sigh.

At this point I currently have about 60 orange popsicles in my freezer.  My son will eat them but he doesn’t go through popsicles as fast as his sister.  And he often wants what she wants and it’s hard to tell him he can only have orange because we have to save the red/purple ones for her. 

When the kids are in school we send them in as treats, or to daycare.  We even gave two dozen to the kid across the street last year.   But I’m not sure what to do with this latest bunch.  It seems a waste to just throw them out but they are taking up valuable freezer space.

I recently heard about the Zoku Quick Pop Maker.  It claims you can make homemade popsicles in 7 minutes.  Maybe I’ll see if I can get my hands on one of them and give it a try.  If I could get my daughter to eat some healthy, homemade popsicles that would be great.

And you know I won’t be making any orange ones

I suppose I should have done this at the beginning, but I’ve never been one for following the logical steps. 

This website just sort of happened rather spur of the moment as a result of a series I did on travelling with special needs children.  Originally this 3 part series was published at Who Wants to Know.   It was then picked up by a travel agency and posted on their blog.  Rather heady stuff to know that people want to read what you’re writing.  After discussions with friends and with my partner I decided to start writing about our life with autism. 

It’s been a hard road to get here, I won’t lie.  My daughter was diagnosed when she was 3 1/2 years old.  Looking back it’s easy to see that it was always there, but with two kids under 3 just getting through the day was an accomplishment.

At about 3 we started to realize that she just wasn’t just slightly behind in her communication, she was falling off the scale.  Around age 3 is when children start realizing how communication works and start putting two and three word sentences together.  She never made this leap and to this day most of her functional communication is one or two words….want juice, go bed, etc.

A lot of her communication is also echolalia.  Think about that old George Burns skit (oh my, I’m dating myself)….”say Goodnight Gracie”….”Goodnight Gracie”.  Yep, like that.  Pretty much anything you say to her will be repeated back.  It’s hard because when you’re trying to tell her what to say “Say Hello”, she repeats “Say Hello”.

She also repeats lines and scenes from Dora and Diego.  Those are her two favourite shows and she has every episode memorized.  Echoing from existing scripts is pretty common.  I‘m going to refer back to Mom-NOS and the presentation she gave to her son’s class.  She talked to them about why Bud repeats things from tv and again, she explains it better than I ever could.  Go read it.  I’ll wait.

OK, so now you understand about scripting and echolalia.  Since almost all of my daughter’s communication is through functional language (to get a need met) and through scripting and echolalia, you can see that it is pretty one-sided.  She can tell you what she needs or wants but she can’t answer your open ended questions.  There are no after school conversations about “how was your day” or “what would you like to do today”.  Most of it is just guess work.

There is a lot of guess work in autism.  Guesses as to causes, cures, therapies, treatments, etc.  But it’s the guess work that occurs at the daily level that is tough.  You have to guess….will she wear these shoes, why is she crying, what caused this tantrum, why won’t she eat her favourite food, etc.

Some days you guess right, some days you guess wrong.

Does anyone else have a child with an apparent hollow leg?  My daughter eats and eats and then eats some more.

She’s picky, of course, she’s 8.  There are sensory issues involved as well.   As you can imagine, there aren’t a lot of fruits and vegetables being snacked on here.  She does drink a 100% fruit/veggie juice (similar to V8 but without as much sodium) to get some nutrients in her but usually she drinks water.

 Cheese is eaten by the pound.  Cheerios are consumed by the box.  .   And she is constantly asking for more food. 

She is a big girl.  She has consistently grown at least 4 inches every year since her second birthday.   She is, and always has been, off the charts both for height and weight.

I have a hard time figuring out if it is because she’s bored,  because she actually is hungry or if it’s tied to her autism and her inability to self regulate.

Of course that means that when told NO or that snacks are all finished it doesn’t go over well.  After being told no, she sometimes just quietly goes into the kitchen, gets it from the cupboard and take it into her room to eat.  Obviously this is an issue because I don’t want her to feel she has to hide the food she eats from us…

This is one of those times when I wish I could have a conversation with her.  How I wish I could talk to her about food, help her identify if she is really hungry, explain how to make good choices….

But I can’t.

It’s often hard to see how far you have travelled when you’re still on the road.  When you’re in the midst of everything, day after day, the small successes get overlooked and you don’t realize that you’ve made as much progress as you have.

I know that we’ve had a great year with my daughter.  There have been many changes.  My daughter has left the autism centre and, after 2 and half years, no longer receives  ABA.  She is in school full-time and enjoying herself.  We’ve transitioned her from an outgrown 5-pt restraint to a booster seat and now to no seat at all.  She transitioned from shirt only to a fall jacket then to a winter coat and added snowpants, boots and mittens. 

She is in bed most night by 9 pm and she’s sleeping through the night for the most part.  She is waking up in the morning happy and looks forward to going to school.  No more fights to get dressed or get out the door.

Since we live these changes every day I forget how different things are now and how we have learned so much.

Yesterday was the Family Picnic at the autism centre where my daughter used to receive ABA.  There was a bbq, face painting, cotton candy and inflatables. 

It was amazing to watch my daughter stand in line and wait her turn to go up the huge inflatable slide.  Over and over she went up the slide, came down the slide and went to the end of the line.  She waited patiently for her turn to do it again.

I spoke to some of the staff from the Centre who hadn’t seen her in months.  They all commented on how much she’s grown, both literally and figuratively. 

As I stood there and looked around, I watched a mother trying to calm her son as he almost vibrated with energy.  I watched a teenage girl with autism sing to another child, trying to stave off a meltdown.  Everywhere I looked I saw other parents like me, trying to find their autism normal.

I thought of where we’d been and where we were going and how far we have come.

I remember when my daughter was younger, I used to wish for a sign that said “My daughter isn’t naughty, she has autism”.  When I was explaining this to my therapist she said what I really wanted was a sign that said “I’m not a bad parent, my daughter has autism”.

I’ve spoken to a lot of parents of kids with autism and the one constant I hear is that people judge and assume that you are not disciplining your child.    I’ve all heard it before…that our children just need discipline, that we shouldn’t give in to them, shouldn’t let them get away with it, that a good smack will set them straight, etc.

Of course, I think the person offering the unsolicited advice is the one who needs a good smack.

Thankfully, now that my daughter is older I no longer get comments like that from random strangers.  Behaviour that appeared to be wilful disobedience in my 4 year old is obviously something more in my 8 year old.

As she has gotten older her differences have become more pronounced.  And now the looks I get from strangers range from quick glances to blatant stares.   But that doesn’t stop us.   We refuse to hide our daughter behind closed doors because she might make others uncomfortable. 

I’ve had people tell me that they don’t know how we do it.  “Do what?” I want to ask them.