Guest Posting at Kveller

I've put some thoughts together on the topic of Early Intervention for Autism over at Kveller.  Go on over and take a look!

My Latest Pieces on Kveller

Hey there, I am still writing, but now I am trying to split my writings between here, Times of Israel and Kveller.  Believe it or not the decision of where to publish is almost as hard as what to publish.


See my latest pieces on Kveller here and here.  And if you like what you read, please show me the love by leaving a comment on  your site or hitting the like button.  Both options will put the piece on your FB newsfeed and will expose the pieces to others.

My numbers on Kveller are not great, so it would be good to get a boost!

Thanks for reading!

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?

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.