Mt. St. Helens, Parks and Superman

First of all, thanks to everyone for all your kind and thoughtful messages on my last blog post, your caring and concern for Maya is touching.

So, we had our interview on Tuesday and it went fine.  It was largely just some questions from a bureaucrat-trying-not-to-sound-like-a-bureaucrat.

We were told by Maya's friend L's dad that we should make the situation seem slightly worse than it is.  Leo and I talked it over and while we were willing to highlight the challenges a bit heavier than normal, neither one of us felt the need to lie or to make sweeping declarations of how difficult our lives are.

Maya has autism, she's in a special school, a special school for the hardest to learn kids, she functions on a level well behind her peers.  Case closed, right?

Well...

The interview itself went okay, it was just a lot of questions:

• Can Maya dress herself?  yes, she can, but she often makes small mistakes like putting her shirt on backwards or if her clothes are inside out she doesn't realize it and doesn't know how to turn them right side out.  During school we have to dress her because she cannot dress herself in a fluid set of actions, she does one thing and runs around, does something else, half puts on a sock, decides what book she is going to take to school, etc.

• Can Maya brush her teeth?  Yes, she does, but I go over it for her most days to make sure her teeth are clean.

• Does she bathe or shower by herself?  She will go in by herself but just to play, we still wash her hair for her and make sure her body is clean.  She knows how to wash her own body but we can't rely on her to do it on her own without us prompting her.

• Can she tie her shoes?  No.

• Can she button or zip up her pants or coat?  Zipping she can do if there is nothing obsructing, but if the zipper gets stuck she doesn't know how to fix it.  She can't button anything.

• What's her behavior like?  Generally she is pretty well behaved, but she has a hard time listening and still will melt down from time to time.  She has to do things in her own time.

This is how they judge whether or not your child is fit to qualify for additional support?  Some bureaucrat in a room, who probably has no experience at all with special needs, for all I know was a transfer from the Parks Commission sits in a room and based on your answers to questions as to whether your kid can condition her own hair,  makes your decisions.

I wasn't comfortable with them asking us questions with Maya in the room, and I asked if either Leo and I could leave the room with her and have the Q & A in private but Ms. Parks said that they wanted to observe Maya.  

So, yeah, put her in a stuffy conference room with not one inviting thing for a kid and force her parents to talk about her and her issues in front of her.  

Leo, who has absolutely no tolerance at all for bureaucratic hoops, even when he knows they are a necessary part of the process, was a ticking time bomb the whole time.  I knew if I even showed even one whiff of impatience or frustration, he was going to blow like Mt. St. Helen's.

So, I put on my best-American tone of voice (how are YOU doing today) and tried to answer her questions.

The whole time doing the interview Maya was quiet and glued to the iPad.  Whenever the woman asked her anything she barely answered in a whisper and made no eye contact.

The whole thing lasted about 40 minutes with Ms. Parks telling us she would liaise with the school and the program we want to enroll her in and give us a decision within 1-1.5 weeks.

After the interview, I talked to Maya and asked her if she had any questions about the interview or understood what we were talking about.  No mommy, I was busy coloring on the iPad.

Thank you, Steve Jobs.

Jumping to yesterday, Ms. Parks gave Leo a call telling him that Maya didn't qualify for the backpack.

See, not disabled enough, apparently I should have listened to L's dad and deprived Maya of sleep and food before the interview in order to trigger meltdowns.

Leo called me and unloaded all his frustrations on the bureaucracy on me.  I let him go, because it is irritating that you have to jump through all these hoops when your daughter has a clear diagnosis and when she goes to a school for kids with cognitive challenges and she has an IQ of 69.

For once, that number should work in our favor, no?

Then, Leo mentions that the athletic practice still has to provide some info for the file.  WTH, they rejected us, didn't they?   So I asked Leo again what they said exactly.  He dutifully regurgitated out the bureaucratic doublespeak, which might as well have been in tongues.  Sorry, I can't do bureaucratic-speak in Dutch.

I suggested he call our contact over at the practice to see if he could provide any clarity.

I feel pretty comfortable calling this guy Superman.

Superman said that Maya, was indeed rejected for the backpack, which is an annual sum of money paid directly to the parents (via a special bank account) where the parents directly pay for therapy and have to provide an accounting once a year.

The Man of Steel said that they've asked for details on the practice in order to process Maya through the national health insurance scheme.  This is apparently a second form of support available to those with disabilities, from the national health insurance fund.  Hard to explain, but those who are terminally ill or disabled, the costs of their care are not covered via individual health insurance policies, this is the socialist way to strike a balance between having no uninsured, keeping insurance companies profitable and the price of policies within reason.  

Superman said that although it is not a done deal yet, in their experience when they ask for these details it means that Maya will qualify for the funding.  He said that he will deal with the request now and we don't have to do a thing.  He thinks in the next couple of weeks, we should receive a written confirmation from the National Health Fund and once we have that letter, Maya can start the very next week.

So, cross your fingers, toes, eyes and whatever else and send out some good vibes for our girl!

I need to look for a sale on Kryptonite.

What do you hope for?

On Tuesday we have an interview with the government agency charged with providing additional funding for those with disabilities.

While Maya's school covers her therapy basics, physical therapy, speech therapy and one-on-one attention and a personal education and development plan, that is as far as things go.  If you want therapy outside of school, you need to request additional funding from the government for it.

Comparitvely speaking, I would say that the Netherlands is a pretty good place to be if you have autism.  Because the Dutch place an extraordinarily high value on conformity , they pounce on differences and want to weed out anyone that can't conform to the standards.   Although the official education policy says that as much as possible, they want to mainstream kids with special needs, the reality is, that in the majority of cases most kids with special needs are not mainstreamed, even those that are high functioning, if they go to a mainstream school, they are in a separate class.

Actually in the Netherlands they don't even use the terms high functioning or low functioning.  Not one person we have dealt with in 5+ years since Maya has been diagnosed has ever used those terms.  In the beginning of the journey, I asked them to classify Maya in this way (because I read so much about it on the Internet) and they insisted that the Dutch system doesn't label children in this way.

There's two ways to look at that.

One is that they don't label the kids and look at each kid as an individual and understand that even a high functioning child might need extra support.  The other is that they don't believe a child with special needs could be high functioning.  So depending on how you look at it, the Netherlands is either light years ahead or light years behind the curve.

I've basically decided to apply my best tunnel vision techniques and not answer this question, because Maya is getting supported and she absolutely, positively needs that support.  A  high functioning label might make me feel better about her future but it also might deny her the services that she so desperately needs.  I am sure if she wouldn't qualify for support, she'd be a mess in a mainstream environment and the multiple daily meltdowns we were dealing with would have become much worse with age and physical strength and Maya would be largely locked in her own world.

Tunnel vision it is.

Anyhoo, we have this interview on Tuesday because we feel Maya could really benefit from some additional support and we are asking for additional funding.  The Dutch call this additional funding a rugzak (backpack).  It's basically an annual sum of money which can be used to offset the costs of therapy, special needs extracurricular activities or additional costs (for instance childcare) since there are no after school programs that accept special needs kids (and even if there were, the costs would be exhorbitant).

The backpack can make a huge difference.  One of Maya's school friend's parents gets enough each year to fully cover additional therapies and childcare after school in the home.  Here, I have been paying out of my own pocket to have an au pair since Maya's horrible mainstream school experience because there seemed to be no other options for us.  Not that I would use this money to cover the au pair, but still.  Amazing how after 5 years in the special needs system, no one ever suggested to us to apply for the rugzak.  You do get a lot more from schooling than you do in places like the states, in the US a school like Maya's would probably be a private school, so I am not complaining, but things are just as full of fragmentation and no one gives you straight information here either.  It's like they build the system purposely difficult so that you have to work to find out everything you need to.

We want to enter Maya into an after school program focused on developing athletic abilities for special needs kids.  It's a fabulous program and it is run by a friend of Leo's family.  They would pick her up at school,  bring her to the gym and they work one-on-one  on different sporting activities and if they find one that your child is good at, and enjoys they will coach them.  Some children  even make it to Special Olympics.  They also have dinner at the center and the kids  learn how to help with things like setting and clearing the table, preparing food and doing chores.   Five of their assistants are people with special needs so for some, it can even offer some kind of career path.  After dinner, they bring the children home.  We think it would be really great for Maya to do this 1-2 days a week.  She reallly loves athletics, and it is good for her physically and the one-on-one could really benefit her without putting her in a strict therapeutic setting.   Down the road if we do get the funding than we would look into ABA therapy.

We'd never even come close to being able to afford this kind of support on our own.  Without the backpack, we don't do it.

Here's the rub.

Maya has come a long way since she was given her official diagnosis of autism.  She understands much more of the world around her, she is more often than not present in the world around her.  If I re-read the psychiatrist's, psychologist's, therapists, teachers reports, Maya has developed quite a lot and while all the behaviors and things they point to which justify the diagnosis are still there, they have a much less significant impact on her life.  The fact she is in a special needs school, and actually the type of school for kids who have the hardest time learning should carry a lot of weight, but still, how do I know that the guy interviewing her doesn't really believe in therapy or doesn't believe that Maya is disabled enough to justify extra funding?

Do I, her mother,  actually hope that this guy finds her disabled enough?

As her mom, I am not enough of a Pollyanna to wish that she wouldn't have autism, because I know she will have autism for life, but what I would wish for her is that her life is not defined by her autism.  What I want is for her to develop enough so that her adult life is one that offers her as many choices as possible rather than a life which is defined by her challenges.   Of course, I don't have a crystal ball and it is hard to know what Maya's abilities will be in a decade, but I feel in my heart that Maya is capable of much more than she shows.  Even a year or two ago, I didn't feel that Maya was ready to handle any additioanl activities or requirements on her time and that anything additional would actually limit her progress.

I do feel she is ready for that now.  While we are very happy with her schooling and she does make steady progress there, I feel that without additional support we really run the risk that developmentally she will progress, but remain within the same competency level that she is in now.

I know that an athletic/therapeutic program or any additional therapy we would do is no guarantee of a different outcome.  I know that and accept it, but I also don't want my daughter defined by my acceptance either.  I want to give her every reasonable chance.

So, yeah, I guess I am hoping she is disabled enough.

Why everyone should work in the restaurant business at least once in their lives

Now that I have hit middle age (gulp), I have noticed that I have a lot of criticism for the 30 and younger set.  It's a rite of passage, those who are a bit older and have more wisdom under their muffin top belt, talk about how the youth of today have no manners, no work ethic and how we are  doomed since these younger generations will take care of us (or not) in our golden years.

So, woo- hoo, I am now one of those kind of people.

I've been thinking a lot about this recently and thinking back to my own youth.  Certainly kids learn manners from their parents and their youthful surroundings, but it goes beyond manners and courtesy.  It's about learning how to think a couple of steps ahead, to avoid difficulty and how to read people.

Sure, I learned a lot of this from my parents and other role models, but mostly I learned this by working in the restaurant business.

I spent a total of 11 years working in some aspect of the restaurant business, I've been a server, bartender, cashier, manager.  It's where I went when I dropped out of college in my junior year and I stayed there until after I finished my Master's Degree.  I stayed because it was a helluva lot of fun.  Seriously the restaurant industry is like no other for the fun, the parties and the kind of people the industry attracts, truly weird-in-the-most-wonderful-sense kind of people of all different types and backgrounds coming together, bonding and brawling over bread baskets, dirty dishes and  the garlic and coffee tinged air.

The restaurant business gave me much more though than just learning how to blow half my tips on shooters fun.  It prepared me for life.  It prepared me to be successful in a corporate career, it taught me how to deal with people, how to treat people and how to deal with stress.

In short, it taught me so many of the skills that I see lacking in our youth today.

Before I go spouting off my list, let me say that when I mean restaurant business, I don't mean European restaurants with your guaranteed salary and benefits and goal of one full seating an evening.  I mean the US restaurant business that makes it's profits by turning tables, where in a typical lunch/dinner sitting you are turning tables 4-6 times a night (sometimes more), where you are working to put actual drinks down your throat food on the table, where hustling is a job requirement.

Here's what the restaurant business teaches you:

1.  How to work hard
You work your a** off.  The simple fact of life in the business is that in order to earn money you have to work.  You work either for tips or an hourly wage and considering the turnover, the amount of people that work part time and the (somewhat) unpredictable nature of the business (getting slammed on a Monday lunch comes to mind), to max out your earnings, you need to be picking up extra shifts or staying for a double. In one restaurant I worked on Saturdays and Sundays they had a shift that was considered a single shift but it was really a double shift.  You started a little later, say 1.00 or 2.00 and worked until the end of the dinner rush which meant you were so freaking tired from running a solid 9 hours without a break, that you'd end up dragging yourself through your clean up and still only get out at 11.00.  But if you want to earn a decent living in the business this is what you have to do.  You think management is the key?  Well they work 70-80 hours without overtime.  They are earning less than a lot of the waiters and bartenders.

2.  How to multitask
In a busy American restaurant, the place might be chugging out up to 200 main courses an hour.  As a cook, you have to be monitoring probably no less than at least 15-20 dishes on your station and also timing it to make sure a complete order comes up at the same time.  So the guy on the grill has to know not only how the steaks should be cooked, but because steak usually takes the longest to cook, he has to know when to signal the guy to drop the pasta or the vegetables which have to go out for the same order and he's doing that for all 15-20 orders he's got going.  As a waiter, you have multiple tables going and you're not just delivering food, you are bringing and refilling drinks, bread, you have to get salads out to another table while someone else wants to pay.  And just for the hell of it you might need to run someone else's hot food to a table (and then bring more iced tea to those chowhounds).  You have to pay people, give them their change and run their credit cards, all the while your other tables are demanding more bread and  you just know that a-hole at table 12 is holding up his glass waiting for you to appear so he can have his 5th iced tea. (note:  free refills does not mean make a pig of yourself).

You learn how to not walk back in the kitchen without full hands or a full tray.  As a bartender on a busy shift, you are making drinks not just for your customers at the bar but also for the waiters to bring to their tables in the restaurant, you have to wash all your glassware try and keep the place reasonably clean and  you may even be coordinating the to-go orders.  You have to make sure you don't run out of ice or booze or those adorable little apple garnishes that go on your idiotic sour apple martini.  Busboys have to clean tables and usually help out the waiters and bartenders by keeping drinks/food areas stocked, but they have to get the dirty tables ready as soon as possible so that the host/hostesses can seat people and keep the waiting time down.  

People that can't master the skill of multitasking don't usually last two weeks in the business, although ironically,  it is usually these very same people who have *zero* self awareness about this and keep trying, it's usually a pretty painful lesson.

3.  How to anticipate
There is no place better to learn than a restaurant how to think a couple of steps ahead.  This one takes a little background info to understand so please bear with me.  It's worth it.

If one thing goes wrong, the place goes down.  Restaurants operate on anticipation, they anticipate how much food they will need at any given shift.  This is determined by business trends, how people tend to order, the time of year.  Restaurants prepare as much of the food as possible in advance and usually just do the final cooking when the food is ordered.  So for instance, take lasagna.  When you order lasagna in a restaurant, chances are they don't go in the back and start making sauce and pasta from scratch.  The more likely scenario is that a determined number of  raw lasagnas are assembled that morning or the night before and stored in the fridge.  The manager determines how much they need for a shift and that number of whole lasagna's is cooked about half way through and cut then brought up to the line and held on a steam table, not to cook it the rest of the way, but to keep it hot enough so that it remains bacteria free.  When you order it, they take out the piece of lasagna, cover it with tomato sauce and cheese and put it in an oven/broiler to cook it the rest of the way.

So, this means that if the restaurant had an unusual run on lasagna, they might run out, which means that they have to assemble more (which takes time and under pressure it takes longer).  This means it takes longer for any order with lasagna to appear, which mean tables that order lasagna wait for their food longer and end up consuming more bread, drinks and whatever else is free (and perhaps become dissatisfied), this means it takes them longer to eat and to leave, all the while the people waiting for a table grows and the wait becomes longer.  Meanwhile all the drinks and bread they are consuming are running out faster and waiters and buspeople have to take attention away from their primary duties to stock up on drinks, make coffee or get ice.  And usually it's the poor bread guy that is stuck making the lasagnas (which isn't his usual job so he/she might not be that good at it), so now you have a wait on bread and servers hanging around the bread to make sure to get it because it's going to go fast when it finally gets out there because you just can't appear again before your tables without something.  So everyone else's service goes down too.

So, yes, a whole restaurant can be taken to its knees just because two ladies decide to share a lasagna.

And you think it's just about food?  Well it's not, any area of the restaurant can bring the whole place down.  Dishwasher calls in sick, you're down a dish guy, that means dishes get washed slower, which means you might run out of clean dishes on the line, which means you have to wait to plate your food, the cooking time goes off, food gets over cooked, customers complain, food has to be recooked, the line gets overwhelmed and there you are again.

You're short a busboy, it takes longer to clear tables and the hostesses then help out, which means that not only are the tables not turnng faster, but your hosting staff is seating people slower, which means the 200 dishes an hour turns into 20 minutes with nothing to do and 40 minutes to chug out the 200, everything backs up.

I think you get it now.  If you don't, forget my advice and don't work in a restaurant, ever.

Now of course a good restaurant manager learns how to keep their eye on the ball and anticipate a problem before it happens to avoid the aforementioned nightmares but as cooks and waiters you have to learn how to do this too, you anticipate what's happening, you see that the food is taking a little longer because it's busy so you put the order in 10 minutes earlier or you see that the ice is half empty and it's busy, you run and get more ice before you run out.  You try to bring drink refills before they are making slurpy noises with their straws.  You just figure out how to think 5 steps ahead of the game.   A restaurant employee worth their salt, whether manager or busboy can recognize and head off these problems before they become problems.  Those who are really gifted in the business (and I like to think I was), can walk into a dining room, a kitchen, bar or the lobby and within 20 seconds know exactly what is happening.  So, it's not only anticipation, but you learn keen powers of observation because nobody is telling you a thing.

4.  You learn how to deal with people
Unfortunately most of the time you learn this lesson because loads of people treat you like shit so you learn what not to do.  People can often be at their worst when they are hungry and most poeple who have never worked at a restaurant are pretty clueless about how things work and make a lot of stupid requests.  Plus, in the US people feel particularly no shame about bossing around a service person.  They will speak to them in ways they never would a colleague at the office.  Sure, you're never going to see this person again and you are getting a divorce, your boss is an a**hat, you're broke and you don't have a date for your 20 year high school reunion.  Yep, take it out on your server.  I won't lie to you, dealing with people on this level on a daily basis is tough, it's really the toughest thing about the business and it jades you.  You can lose all your faith in humanity on a Saturday lunch shift or a holiday which is about the worst time ever to work in a restaurant..  But the flipside of this is that you learn how to not take people so seriously and you learn how to not react to every little thing and let stuff roll off your back.  You also learn how to deal with people, how to keep a jerk happy and how to appreciate those that add value in whatever way they do.

Besides the customers, as I mentioned earlier the restaurant business attracts a cast of characters like you have never seen.  Working mommies, students, drop outs, druggies, ex-cons all under one roof dealing with enormous (but not lasting) pressure.  Plus most people in the business are fairly young and shall we say, morally open minded so there is a lot of hooking up going on and a lot of gossiping about it the next day.  Walks of shame turn into shifts of shame (often next to the cute busboy's girlfriend), you learn real fast how to (1) develop the best poker face EVER and (2) deal with all kinds of people.

Not that I have any personal experience with that whole shifts of shame thing, but I heard about it.

Now, this list isn't to say that if you work in a restaurant you will develop these skills, because let's face it, you can't cure stupid and some people are just too clueless to learn a lesson when it is in their face, but the restaurant business offers a great learning ground which will prepare you well for wherever your life takes you.

I highly recommend it.

Guest Posting on Kveller

Hey there,

I've just done another guest post on Kveller, and I am proud to say that they have decided to make it one of their featured posts for this week.  The post is all about autism and rejection.  Come on over and read it (and please do leave a comment directly on the Kveller site).  Any feedback is welcome!

Check out the piece here.

Six Ways To Deal With Special Needs

At work, I spend a lot of time facilitating workshops for people to brainstorm ideas about how to solve  problems.  What I find is that for lots of people, it is tough to come up with ideas.  People might be worried about what others in the room will think of their ideas, they may feel they don't know enough about the subject matter to contribute in a meaningful way or they may not believe the problem can be solved.

One technique I sometimes use in workshops to stimulate ideas is something called negative brainstorming.  That's basically turning a question around and rather than thinking positively on how to solve a problem, it is sometimes easier to generate ideas if you think of how not to solve a problem.  It works like a charm if you ask people what not to do and reverse the negative statements into postiive ones, then you have ideas galore.

I've yet to see this technique fail to generate ideas.

My daughter was diagnosed with autism a little over 5 years ago. From time to time I get questions about my daughter and her situation, what autism looks like on her or questions about autism in general.  For the past few months people have been quietly messaging me asking me how to deal with a special needs situation that they are facing.

I also too often get unsolicited advice on how to parent her, sometimes from other parents, sometimes from parents who have no experience with autism and sometimes even from people who have no kids.  The advice of the childless, by the way,  is always the most sound and logical, since it is given in a perfect world, where one doesn't have to worry about an actual child interfering with the perfect scenario.  As many have said before, we'd all be great parents if we didn't have any kids.  Have a kid and then give me a call, okay?  I don't give people tips on flying the space shuttle, guess why?

I digress, apologies.

Every once in a while though someone actually asks me for advice on how to deal with a situation with a special needs child that is not their own.   I like it when someone asks me this, it means that first and foremost, they are actually thinking about how to approach special needs and that is fantastic.

Still, although I am a special needs parent, I don't have all the answers and sometimes when people ask me for advice I am not sure exactly how to advise them beyond platitudes like be inclusive, be sensitive, etc.

So, I am turning my facilitation technique onto myself and doing a reverse brainstorm to come up with tips for people not acquainted with special needs to deal with special needs.  These tips are based on situations I have experienced as the mother of a child on the autistic spectrum and I guarantee you, each one of these tips are things that have happened to me numerous times IRL and have made me want to cut a bitch or at least slap her (or him) silly.

Buckle up.

Staring

Staring is rude.  Staring at a special needs kid is rude too.  There's nothing worse than being somewhere with 20 sets of eyes digging into your back while you are trying, sometimes desperately, to handle a situation while at the same time attempting to hold onto some semblance of sanity.

Even if the child is behaving in a way that you find strange, if the child is causing a scene, if the child is melting down, don't stare.  That child may be experiencing a situation you are not familiar with (overstimulation, confusion, fear, anxiety or something else entirely) and a parent on the other end of that trying to handle the situation without resorting to joining her kid on the floor.

What you can do instead is try to catch the parent's eye and give him or her an understanding nod or glance or smile.  Believe me, whatever you are seeing, the parent is mortified and wondering how they can get out of the situation with a little dignity.  You can never feel more alone than in a crowded shopping mall when your kid is having a meltdown or not listening.  That little nod from a stranger can make the world seem like an infinitely better place, it can keep you on this side of the sanity line.

It can make your day.

Pointing and Making an Example

Actually pointing is worse than staring but a lot of people refrain from pointing because it is considered rude in any situation, but believe me it happens.  Like the time my daughter melted down at the swimming pool and a mother pointed at her and told her little boy, see, that's how bad kids behave.  

What you can do in that situation is not to do this, stop it now.  You know nothing about what you're seeing, show some class and some dignity and show your kid those limits you are talking about.


Careless Whisper

I can't tell you how many times I have been at a gathering and my daughter has done something which begins a conversation between people trying to figure out what is going on.  A few years back my daughter who was near meltdown stage at a birthday party threw something on the floor, and after I managed to calm her down and get rid of that sinking feeling of wanting to climb in a hole somewhere, I was treated to two people sitting close by talking about what must be wrong with my daughter.  My child may be autistic, but I assure you, I am not deaf.

Commentary

Don't make comments, unless of course you want me to punch you in the mouth.  Seriously, you have no idea what is happening.  You are seeing a snapshot of a situation but have no earthly clue what the photo album looks like.  This has happened to me so many times, I've lost count.  Do people really think they are helping when your kid is having a meltdown at an interactive fountain and they chuckle and ask isn't she too old to behave like that?  

Well, stupid lady, she might be, but what I know for sure is that you are certainly way too old to ask such stupid questions.  And PS, there is such a thing as a stupid question.  Next time you are looking for proof of one, remember this.

Assumption, assumption what's your function?

The saying is true, when you assume, you make an ass out of you and me.

Don't think you can understand a situation when you see a kid doing something.  You have no idea what is going on.  Not every autistic kid (or special needs kid for that matter) looks like someone with special needs.  Don't jump to the conclusion that a child is simply badly behaved or badly parented just because the child is not rocking back and forth with their head down muttering to themselves.  Again, what you see is a snapshot.

I can think of at least 5 times where I have been treated to a lecture series by some well meaning person who has observed my daughter in action and then had to sit and listen to this person while they held court to talk about how kids today aren't raised with any limits.  Or the time at a party we attended a few years ago, when Maya became obsessed with the host's kitten and continually chased it around.  She wasn't doing anything bad to the kitten, just chasing it through the house and playing with it and laughing her head off.  I spent the entire party saying "Maya, leave the cat alone, Maya, stop chasing the cat."  Finally, the cat owner got annoyed with Maya, yelled at me to control my kid and she and her posse walked out onto the balcony with the cat and gave me the stinkeye the rest of the day.  Um, did you hear me tell my kid to stop chasing the cat six billion times?  No one at that party even knew my name, I was the stop-chasing-the-cat-lady.

Suffice it to say, we've never been invited to another one of their parties, oh well.

Asking Questions

Yes, please do ask questions.  Maybe though not when my child is in mid-meltdown mode.  Choose your moment well, however,  and I am happy to answer any questions about autism or how you and your child might interact with my daughter in a meaningful way.  Most other parents of special needs kids that I know feel the same.

For one, like any parent, we like to talk to about our kids as much as anyone else, but more importantly, as tough a job as parenting any child is, parenting a special needs child can sometimes be a particularly lonely place.  Daily routines are fraught with challenges, special needs children need constant supervision and we are always on the lookout to avoid situations which might trigger our child to become frightened, overstimulated or unruly.

Model inclusion

Ok, I was going to try to avoid platitudes and generalizations, but one of the best things you can do, particularly if you have children of your own is to model yourself as someone who is inclusive to those with special needs and show them that people with special needs are not to be feared or ignored or ridiculed.  In fact, in a lot of situations they can find a meaningful way to socialize with a special needs child, perhaps not in the same exact way that they socialize with their other peers, but in a lot of circumstances, with a little creativity, it is possible to find meaningful ways to interact and include a special needs child.

If your child has regular contact with special needs children try encouraging your children to include a child with special needs in some social activities, even if it is one-on-one time.  This can certainly be challenging, particularly with younger children who get more easily frustrated by the challenges special needs children present.  My daughter is friendly with a little girl and while it doesn't always go smoothly between them, it often does, particularly if they play together without other kids around.   This little girl is very sweet but she can be bossy and what she enjoys with Maya is that Maya will let her call the shots in terms of what they play and how they play.  Maya is nearly always the dad when they play house and nearly always the student when they play school.  As a mom, I was a little concerned about this at first but I talked to Maya about it and Maya said, let her be the mom and the teacher, I don't care she cares a lot about it, and look how happy it makes her.  And although as a mom I would like to see my daughter choosing more, she has to follow her own personality and when I hear them playing, Maya is always having fun as a student or as a dad.

Ask parents what might be a good way for your children to do something together and if there are frustrations in the play, talk to your kids about it, explain why something might be challenging for someone else and encourage them to find what is good in the relationship.  Not only will it make a world of difference to a kid with special needs, but your own kid will develop compassion and will be better for it.

Was that so hard?

Guest Spots

I am delighted to announce that the Jewish parenting site Kveller has given me the privilege of being a guest blogger on Raising Kvell.  Here is the link to my very first piece.

And, lest we forget, here is my latest piece on The Times of Israel.

Another Log on the Fire

The first week of April - the beginning of autism awareness month.  I've been counting and I think this is around the gillionth blog post on the interwebs about autism awareness.

What I've been made aware of most during this first week is that the world of autism is hugely divided.  I've been watching arguments on Facebook and the blogosphere, I even made the mistake of participating in one or two conversations where I dared express an opinion different than the herd.

Definitely not a good idea.

I am no stranger to arguing, but it's almost impossible to have a good debate in the world of autism.  It's a mysterious world.  We don't know for sure what's causing it or what to do about it but man, we certainly do know who's absolutely wrong.

It's irritating, but the most irritating thing is how, even though I know how divided that world is, how I know there is absolutely no point in even starting the debate in the first place, how even with how well I know that, that sometimes I make the choice to participate in what is really a huge waste of time and energy.

I'll work on that.

This year though, I have noticed a very definite theme in just about everything I've read.  What I've seen most prominently is people insisting that they are not interested in judging other people's views or choices regarding autism but yet through creative writing and passive-aggressiveness (and sometimes assertive aggressiveness) they go right on ahead and belittle someone else's views or choices after insisting that they are not interested in that.  Saying things like, they are not going to comment about the ridiculousness of the whole blue thing (that's Autism Speaks light it up blue campaign) or that if people want to continue to focus and operate solely on their own situation and not doing anything to change things,  than apathy is their choice.

I don't squarely fall into any one autism camp and as time goes on, I continue to think that is a good thing.  I am not ruling a lot of things out (except that vaccines cause autism).  I like what neurodiversity has to say, that autism is about acceptance and not about disability but I also recognize that many many people are denied necessary services and therapies and other aides which could really enhance their own lives and the lives of their families, caregivers and people around them.  I am alarmed by the numbers coming out of autism and although I do think some of that is accounted for through better diagnostic tools and techniques, I do think those numbers are alarming and we need research and funding to find out the causes and dare I say prevention and cure for autism.  I don't subscribe to the diets or biomed, but if my child were suffering medical problems related to their autism, I would probably know more about it and might even try some of it.

But, I don't subscribe to any of these ways of thinking hook, line and sinker.  Because my daughter is being helped, she is progressing and all in all, she is doing well, she's learning, she's living her life, she is not moving from one crisis to another.  I am so grateful for that, because I know that despite her challenges, we are lucky and we are blessed.

I am not the world's foremost authority on autism and I don't blog to be considered some kind of expert.  I share our experiences because it helps me to do so, it helps me to process my daughter's situation, it's a comfort to me and it helps me to get some perspective on the situation.

This is what I know about autism:

• Autism looks different on everyone who has a diagnosis.  Therefore, because of that, not everyone's treatment is the same either.  
• Many people need access and resources to get essential services, whether that is medical intervention, therapeutic measures or educational support.
• We don't know exactly what causes autism and we need to find that out so that treatments and prevention can be developed to ease the suffering and help those on the autistic spectrum achieve as much as they can.
•   Many people, particularly those not personally touched by autism know very little about it and are subject to developing views which don't focus on inclusiveness, tolerance and acceptance.  

And my big truth:  I love my daughter and as much as I would love to be able to focus my energy on the big picture, she must be my first priority.  I am her mom and no one else will fight for her if I don't.  Therefore I choose without guilt to focus on the little picture, on her, on helping her develop every day, on helping her to achieve as much as she can, no matter what that ends up looking like.  

That's not apathy, that's motherhood.  Perhaps it is my version of motherhood and someone else's looks differently,  but we have to live our own truth.  

I'm living mine.