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?

The Origins of Bullying

The parenting topic du jour lately seems to the the topic of bullying.  Last week's tragic accounts of the suicides of 3 teenagers after being outed as homosexuals by bullies has put the topic of bullying in the forefront of a lot of people's  minds and rightly so.  I read an article in the NY Times yesterday which asserts that bullying is starting younger and younger.  To read the article click here.


While reading this article, which does not assert that bullying is a new phenomenon but it does leave the impression that bullying has evolved now into younger and younger kids being the victims of bullies and explores some of the reasons for that.  All the reasons seem true, but unfortunately I know from personal experience that bullying younger kids is not new.  How do I know that?  Because I was bullied.


As a kid, I must say that I really didn't know what it meant to be a friend to another child.  I never really learned that and my parents never taught me.  A lot of parents didn't talk to their children about things like this in the 1970's. Socialization, like a lot of things in those times, was just supposed to occur naturally.  On top of my lack of social skills, I was also a bed wetter, which  to say the least did nothing to build my confidence. I lived in fear that other kids would find out and on the rare occasions I was asked to sleep over at another kid's house, I never got any sleep, too afraid to let myself relax for fear that I would wet the bed and not only rock my precarious friendship, but give the kids more ammunition. Imagine a six year old kid being up at 3AM, dying of thirst (because of course I didn't drink anything since the afternoon in fear of what that might bring at night), just looking at the ceiling and and trying not to be afraid of the creaks and noises of a strange house,  fighting back tears.  That was me all over.  I hated sleepovers.  I wanted desperately to be asked, but when it was time to go to bed all my fears went into overdrive.  Like all kids, I wanted to belong, to have friends.  My social ineptitude and all the other stuff made me completely desperate to have and hang onto a friend, I was clingy and whiny and willing to do nearly anything to stay in someone's good stead.  My social ineptitude coupled with my desperation was not a good formula for fitting in.    I was and was labeled as a crybaby, a misfit and therefore was an easy target.  


I was the kid who stood alone at the bus stop while the other kids taunted and teased me and would not let me stand near them and who forced me to get on the bus last and face the rejection of the other kids who didn't want me to sit with them.  In winter I was pelted with snowballs and in the summer my hair was pulled or my halter top untied on the school bus while suffering the laughter of all the other kids when my bare chest was exposed. Once I was in school, things were better as there were other kids and plus with adults around I was more protected.  I used to get off the school bus at the end of the day and try at first to walk home calmly under the radar, because I knew if I ran, they would run after me and taunt me or hurt me and I would end up walking in the house crying which would probe questions either from my mom or my brothers, none of which I wanted to answer.  What started as a walk often turned into running to escape their taunting or rock throwing when I was sure I was close enough to my driveway to run fast and escape them because I knew they wouldn't dare run into my driveway and up the stairs to the door and risk running into my mother.  The hardest part was that some of these same kids who followed along with the ring leaders did call me up for play dates.  So after school and on weekends I did go over to other girls' houses in the neighborhood and they came to our house, but like clockwork, the next school day they would be huddled over with the rest of the kids, and maybe while not directly participating in my daily humiliation, they were silent conspirators.  The sum of all this was that I was terribly confused, not understanding why in private some kids were willing to befriend me but yet were not willing to be my friends in front of the bullies.  Granted, the bullies in the neighborhood I grew up in were older boys and the other girls in my neighborhood were surely too afraid to stand up for me for fear that they could be next.  As I got older things did get better, we moved when I was 9 to Miami and at least to my way of thinking I was able to make a fresh start.


When my parents divorced when I was 13, we moved back to Pennsylvania and I ended up at another new school where I attended high school.  While I easily made friends there and was lucky enough to find a really sweet group of girlfriends who lived in my neighborhood, I still had to put up with taunting.  In particular there was one boy in my neighborhood, he was a star athlete, from a good family and for some reason unknown to me, this boy didn't like me on sight.  I knew I never did anything to deserve his taunting because I didn't know him and it started the first day of school.  He taunted me on the school bus and in the winter throw snowballs at me and in the summer, throw rocks.  The only difference was that my friends stood by me and didn't leave me alone and instead of me being the outcast, he was, at least at the bus stop.  I even suspect that he was the one who poured gasoline on our yard, spelling sexual expletives out on the grass for the whole neighborhood to see when they drove by.  I learned what giving h**d was because it was spelled out on the grass and I had to ask my dad what it meant.  Talk about your embarrassing moments.


On Facebook I have been having a lot of comment threads with friends about the causes of bullying and the consensus I see  is the idea that bullying comes from ignorance.  Yes, there is ignorance involved in bullying but I think it is something more than that.  Low self esteem?  Sure, but I think the primary cause of bullying is bullying.  A child is bullied by someone and they feel the need to bully someone else.


As much as I hated being bullied, I was a bully too at times, particularly in elementary school.  There was one kid who, if it was possible, was perceived by me as being a weaker link than me and instead of me sympathizing with him I teased and taunted him too.  I was grateful that 20-some odd years later by chance, in Israel, I ran into this boy, who was now a man,  and had the opportunity to apologize for what I did to him.


This experience of meeting up with a kid that I had bullied got me thinking about why I had felt the need to bully this kid after I had been brutalized so horribly.  Had they been bullied by someone too?  Then I remembered that one of the kids who was the leader of the pack of the kids who brutalized me in elementary school was my next door neighbor.  He was a year older than me in school and his younger sister (who was a year behind me in school) was one of my 'secret friends'.  I spent a lot of time over at their house.  Their mother who I thought was very sweet because she hugged us all the time, spent most of her time sleeping, even in the middle of the afternoon which seemed strange to me.  Most of the time she didn't get up until dinnertime and in her beautiful, flowing nightgowns she would make dinner for her kids and sit and cuddle with them.  She always drank ice water out of these little round glasses with gold around the rim.  They were so delicate and beautiful, like she was to me at the time, and I just loved the way the ice clinked against the glass.  She always drank her water so fast I used to wonder why she didn't take a bigger glass for her ice water.  Still she was a very sweet, kind, delicate woman and much more gentle than my own mother.  She liked rock music and we used to listen to Elvis Presley with her and sometimes she would dance with us or sing into her hairbrush and just be silly with us.


Their father, who was not home very often,  because as I learned from my mother when she and my father talked about how they didn't want me spending time over there, spent most of his days at the race track. I used to beg my mother to let me go over there and she felt sorry for me, although she didn't know the extent of what I had to put up with every day, she knew I didn't have a lot of friends, therefore more often than not she capitulated and let me go over there.  She would ask me if the dad was home, and I always said no, because she would not let me go over there if he was home.  It was good he wasn't at home very often because his family was definitely on edge whenever he was around.  There was no singing or dancing when he was there, that's for sure.  I also didn't like being there when he was at home and my mother always told me I had to come right home if he was there.  But I didn't always listen and sometimes stayed hoping that he would go out again, as he did sometimes, then we could return to listening to records, dancing and having fun.  Their dad always wore three piece suits, but his shirt would be untucked, his hair a mess and his tie half undone.  My parents had anger issues, but nothing like this guy. He was never without a drink or a beer in his hand and on more than one occasion I saw him hit his wife and once he beat his son with a belt buckle when I was in the house.  I didn't see him do it because my friend and I were told by the mother to stay in the basement and play until it was all over.  When it was over the boy came downstairs to us and showed us the red mark the buckle made.  Of course at 8 years old when this boy pulled down my top on the bus or pushed me off my bicycle I wasn't thinking of the beatings he had to endure from his own father or from my brother Gary, who was 15 and who punched this kid and gave him a fat  lip for pulling my top down and for making me cry a thousand other times.


What I understand as an adult but didn't get as a child was that this kid bullied me because he was abused by his dad. I bullied a boy because I was bullied.   I wonder what the other kids who bullied me had to endure?


I wish I would have told my mom or dad about what I witnessed in the house next door.  I saw a lot of terrible things and that was what I saw, I can only imagine what went on when it was only their family at home.  I have felt bad that I never told anyone about what I saw there, at times I thought maybe I could have helped that boy and his mother to stop being beaten.  The truth is, in the 1970's it would have been my word against the father's and probably nothing would have happened.  Beating your kid with a strap was much more commonplace in the 70's and although I never experienced that type of brutality from my own parents, I was hit on occasion and hitting just seemed like a natural extension of parenting.  Still, knowing what I know now and after years of analysis I do know that part of me was afraid that if I told, I would be seen as a rat, even more ostracized, terrorized and I was just too scared. 


I hope that whereever my former next door neighbor and his sister are that they are okay and more importantly, if they have kids, they are okay.


Which brings me to another thought.  Not only do we need to teach our kids that bullying is wrong under any circumstances, but we have to give our kids the confidence to stand up and speak out when they witness another kid get bullied.