Sunday, October 17, 2010


Today was a good day.

The day started off well, with the children sleeping through the night until their typical wake up time of about 6 AM. Twin B came in first this morning, which is a bit unusual, and asked for the TV to be turned on.  We managed to put her off for about a half hour before we gave in and turned it on for her.

You see, Twin B has this thing were she has to have constant noise (preferably electronic) in the background and she has this other thing with the word "no".  For the past few months, whenever you tell her "no" she immediately goes into full meltdown mode and tantrums for the next twenty to thirty minutes.  When you combine denying her one of her "stims" plus the word "no" you get a somewhat volatile situation.

Fortunately, we managed to avoid the meltdown this morning after using the dreaded "no" word and only had some minor crying off and on for the next 25 minutes before she finally calmed down enough that we could give her want she wanted.  In our world, this is called progress.

You might ask yourself why we would risk a meltdown at 5:30 in the morning (when we were still sleeping), and the answer is simple.  My daughter has autism and we have to do everything possible to help her get past it.  We don't have the choice of trying to help her get past the problems some of the time and not others - consistency is one of the keys to overcoming the obsessions of autism.  And before you say that it doesn't matter, it does.  She has to be able to accept the someone telling her "no" and she can't assume that every if there is a TV in the same room as her that it will be on.  She has to be able to function in the world even if it isn't exactly to her liking.

The rest of the morning was fairly uneventful, with only a few hiccups.  The twins did their typical trick of only grazing on  breakfast while Baby C showed some (cough, cough) "spirit" in an attempt to get my cup of coffee.  For some reason, she really likes coffee but, while that isn't too bad, dealing with a three year old strung out of coffee isn't my idea of a fun morning.  I let her have a few sips before cutting her off and being treated to her trademark "try again".

That last bit takes a little explaining.  While my youngest is higher functioning than her older sisters, she is still somewhat limited in her ability to communicate and much of her speech is scripted.  She tends to reuse phrases that she has heard other people use, although she does use them in an appropriate manner.  Since she has heard the "try again" many times from her therapists when she gives an incorrect response, she has decided that that is the appropriate way to answer us when we give her an answer that she doesn't like.

So when I say "no more coffee", she replies with "try again".

It might not be the typical parent/child interaction, but hey, its communication.

A little later on in the morning, Twin A started getting upset for some reason.  It took about fifteen minutes and a small tantrum before my wife's mind reading abilities kicked in and she was able to figure out what was wrong -  the child was bored and wanted something to do.  So we got out the paints and some other art supplies and let her go to town.  Problem solved (except I am going to have to clean the paint off the walls later on tonight).

You might ask why Twin A didn't just ask to paint, and the reason is again simple.  While the twins definitely have the basic communication skills to ask for something when they know what they want, they aren't to the point yet were they are able to express an abstract though or idea such as "I want to do something but I don't know what".  Hence the agitation and the small tantrum.  Irresistible desire to express, meet (almost) immovable communication block known as my daughter's form of autism.

After lunch came the highlight of the day.  We took an outing as a family to not one but two novel places.

First we went to a fish store to buy some supplies for the fish tank and to let the kids look at the fish - they all love fish (no idea why).  That part of the trip went relatively smoothly with only a few bumps transitioning into the store.  The twins were a little stressed by the new environment - we could tell because they were walking around with their hands over their ears - but soon enough they were jumping and waving their arms in front of the fish tanks.

As an aside, if you have never seen two children jumping and hopping through a store while holding their hands over their ears and flapping their elbows, you have to see it.  While most of the people in the store glared and seemed to want to say "what is wrong with those children", we have to laugh because of how much fun they are having and how cute they look.  Besides, it wasn't all that long ago that they refused to even walk on their own while out in public, so hopping is progress.

Anyway, we stayed in the store for a good fifteen minutes before we noticed the tell-tale signs of increasing agitation and took that as our cue that it was time to go.  It got a bit touchy as Twin A wasn't quite ready to leave but her sisters were more than ready.  As we headed to the door, she did her typical bit of dropping to the ground and shouting and I had to resort to picking her up and carrying her out of the store.

The second trip was to a restaurant that we had never been to before.  It is very hard to find any restaurant that not only has food that the twins can have - they have food intolerances - but that also has food that they are willing to eat.  They are picky eaters and are adverse to trying anything new (yet another thing that we are working on).

Baby C is easier because she does not have any food intolerances and she is typically happy to try new food.  However, today she decided that she wanted nothing to do with new food or with a new restaurant and felt the need to share her displeasure with the entire restaurant.  She started crying the minute that we were seated and finally managed to calm down shortly after we placed our orders.  After that, the rest of the meal went well and, much to our surprise, the twins actually ate what we ordered for them.

After the restaurant we even managed to take a short walk around town before returning to the car and returning home.  I guess that actually make three novel environments for the kids today - a new family record.

As I said, today was a good day.  Today we helped our daughters deal with their obsessions, communicate a little better, and cope with the stress of the unknown.  Or, in short, today we helped them overcome just a little bit more of their autism.

Today we all had a good day and enjoyed ourselves in the process.

But today was not a day without autism.  I don't know if we will ever again have a day without autism.  Almost every single thing that we did today was carefully laid out and planned with autism firmly in mind.  With three children on the spectrum, we do not have the luxury of ever forgetting for a moment that our children have special needs because if we do, the day will not go so well.

But such is the life of an autism parent.  As much as I wish that my children did not have to struggle with autism they do, and there is nothing that I can do to change that fact.    My children have autism and I, like many other autism parents, will do whatever it takes to help our children get past the difficulties that autism can cause.  We will give up our ambitions and goals and completely change our lives in the hope of making a better future for our children.  We do this not because we are trying to make our children into something that they are not but rather because we want them to have the best chance possible of overcoming their autism.

By now, you must be wondering what the point of this entire post is, so here it is.

Being an autism parent can be a tough - and sometimes thankless - job, far more so than being a parent to a "typical" child.  If you are lucky, your efforts will be rewarded when your child is able to function on their own in spite of having a disability like autism.  If you aren't, then you worry about who will take care of your children once you are no longer able.

As I said, it is what it is.  But, given all of that, there are people out there who seem hell bent on making our job harder.  I am talking about people like Suvi-Tuuli Allan who don't seem to know what they are talking about and say things like this -
@TannersDad: We can save more children if we cure the parents. #autism
and this -
@TannersDad: I was being sarcastic. WTF is a profound autism anyways?
and this -
Finding a cure for #autism is all about parents trying to make their kids "normal" so they can be proud of their productive little NT kids.
The first time I ran across people like this,  I was flabbergasted.  Lately, I have just been getting annoyed with their ignorance.  So let me just make this simple for all of the children like Ms. Allan who seem to think that they understand exactly what being an autism parent is like.

Shut up until you manage to grow up and learn what the hell you are talking about.


  1. Ironically, we're only 25% of the "autism" parents out there. The one's that want their children to have independant lives and work to get them there. My Mother again last night mentioned a friend who's a teacher that has 2 undx'd children in her Gr 1 classroom and cannot help them. The parents, just say "you deal with it". So I just ignore them.

    Yes, I've watched a child bounce excited with his hands over his ears... and he's nearly 9 now.

  2. I don't know if the deck is really stacked 25% care, 75% don't. In my experience, the minority are the parents who don't do anything or are in denial about their children's autism. But I guess that would vary from region to region.

  3. Don't let it get to you. Ignorance and arrogance - two things that cause most of the problems facing this world!

    I have never met any parents who had significantly affected children who did not care or sat around and did nothing.

    Maybe I will run in to them at some point...

    I have met parnets with kids in regular classrooms, able to "function" and get through the day, without causing other people any harm - ignore the obvious signs because the kid is well you know, not so bad. However if they were diagnosed, and given the appropriate help they would be so much better off. (or wouldnt become manic depressive when they are much older).

  4. Hi MJ -

    I totally and completely understand your day, the decisions you made in which battles were worth fighting, and your feelings of victory that most people just wouldn't understand. Nicely done.

    I generally try not to advocate pre-emptive tazing based on twitter evidence, but in this case, I'm making an exception.

    - pD

  5. We've been very lucky with our five year old son, we feel we've been handed a miracle, although it's been alot of hard work and total diet change. Because of my 41 year old brother's autism I know exactly just how lucky we are to get the progress we have. Whenever the inlaws criticize our diet changes and such, I just want to send my brother to spend two weeks with them to let them know why "no" has to mean "no" to our son and why giving him foods he reacts to isn't ok. Parents with autistic kids just don't get the margin or error that others can take for granted. I think most folks have a hard time comprehending it, but that trend is changing. With the autism rates soaring it's going to get more common.

  6. Thanks for all of the kind words. I should just ignore people like this, but some days it is harder to ignore the stupid people.

    @Stranded -

    I too have yet to meet (in the real world) a parent who accepts that their child have autism, understands what that means, and does nothing to help. I have seen parents in denial that their child has a problem or parents who don't understand the magnitude but once they get it, they act.

    I have however seen people on-line who actively preach doing nothing to treat their children's autism other than some vague notion of "acceptance". I sometimes wonder if they have given up or simply don't practice what they preach. I find it unfathomable that a parent would accept that their child has a problem and yet refuse to help, but I am sure that parents like that are out there.

    @pD -

    If you want a laugh, spend some time reading the rest of this person's twitter feed. I read through some of her other comments before I wrote this and I don't think this is the only subject on which she acts childish.

    @ Mrs. Ed -

    We have had an uphill struggle with some of our family members too. The majority of them have done very well once they understood what autism is and the restrictions we operate under, but there are always the ones who just don't get it. They seem to have a hard time understanding that no gluten, casein, or soy means no gluten, casein, or soy and "just a little bit of butter" can hurt.