One Sick Mother

The Best Parenting Advice I Ever Received

When Joe was first identified as having special needs, we did the typical kneejerk reaction of doing All The Research and implementing All The Services. We placed him in a special preschool and we dutifully attended all of the meetings, seminars, support groups, playgroups and other activities as much as we possibly could.

Joe made zero progress at that place and we removed him after a year.

However, Himself and meself learned a lot about parenting a special needs child. Or any child, actually, as the same stuff -a lot of which is plain common sense-  works for typical kids, too. So we don't consider that year wasted at all. Joe made no progress, but we made HUGE progress, which of course, benefitted both kids over the long term. 

The particular advice referenced in the title was learned in a seminar on special needs parenting. I can't remember the woman's name, which is unfortunate as I think I owe her my sanity. I would like to have credited her with that.  

The advice went like this:

"Think very carefully before you say "No"".

She then expanded: ""No" can turn into a battle very easily and come down to a battle of wills; a quest for control. If there is any way that you might be browbeaten and harrangued into changing your mind, just say "yes" upfront. That way you retain control of the situation and are still the boss."

The other part of this -an essential part- is the conditional yes.

"Mom? Can I have a cookie?"

"Sure! Right after  you finish your dinner"

So not saying no, but placing a condition and onus on the kid.

That seminar was probably 12 years ago and I have lived this advice for all that time. It has worked well for me. There have definitely been times when "no" has been n the tip of my tongue, but I asked myself  do I really want to do this now? Do I really want to have a Big Battle over this insignificant-in-the-greater-scheme-of-things ...thing NOW? And the answer was usually "No". No I didn't want that battle. So I said "yes". And the world didn't end because I caved. Mainly because the kid didn't know that I'd caved. He (or she) just heard "yes" and went off happy.  

People might think this approach turns you into a complete pushover. It doesn't. The kids learn when they can ask for stuff and they learn that there are usually responsibilities to fulfill before they get stuff.  It also makes for a lot less fights and power struggles. And of course, I will still say "no" to the big stuff and stand my ground quite happily on those issues. It's mainly the small stuff that's a default "yes". I pick my battles.

And because the default word in our house is "yes" rather than "no"; this makes for an overall more positive environment. These things are pervasive.

Finally,  -at least once- this parenting trick provided a stranger in the supermarket with a good laugh. Grace was then around three:

"Mom can I have a puppy?"

"Sure! When you're 35."

"OK!" (happy).

 

Another Cure for Picky Eaters

A conversation I had recently:

Joe: "om nyom yom yom"

Me: "So how was swim practice?"

Joe: "nom ...sGood! munch ...learned to jump off the chomp blue thing".

Me: (dodging bits of food that are flying, Cookie Monster Style, across the table) "So do you like that dinner? it's new?"

Joe: "chom... What?  (Looks at dinner for first time) ..um... I don't know...  munch"

Joe: "nom nom nom. s'OK.  Is there more?"

 

Swim team: Curing picky eaters since... I dunno when.

 

 

10 Myths Regarding Autistic Spectrum Kids

 Recently. I was clearing out my inbox, which has stuff in there going back to 2002 (if I haven't responded by now, well, I guess I am never going to!) and I found some hilarious e-mails and exchanges I had in relation to a little fun exercise I ran years ago across some special needs message boards, which were entitled "The Golden Crock Awards" . We accepted nominations from parents of the biggest "crock" they were handed by a professional regarding the evaluation or diagnosis of their special needs child. There were a few doozies in there. Some I found/remembered:

• "He can't have Sensory Integration Dysfunction because he eats potato chips"
   
• "He can't have Autism because he makes eye contact"
   
  
• "She can't be autistic because she smiled at me"
    
• "He can't be autistic because he is affectionate towards you"

Now, all of these comments were made by professionals: psychologists, teachers, therapists and the like. I got to thinking if the professionals are still saying (untrue) stuff like that, there still must be a lot of myths floating out in the general population. So this is my little attempt to bust a few of them. There are a few  "submyths" in there that I thought merited special mention, too.

I know there are a lot of blogs and articles out there about the "myths of Autism" and I read a few of them. I don't want to duplicate anyone's work. The problem I have with most of these other articles is that they talk about this entity "Autism" almost as if it were some kind of entity in its own right.

It isn't. 

When I use the term "ASD Kid" herein, I am referring to children with an Autistic Spectrum Disorder. This could include kids with the diagnosis of Autism, Autistic Spectrum Disorder, Autistic Disorder,  PDD-NOS (AKA Atypical Autism), Asperger's Syndrome and High-functioning Autism. I am not sure if this list also applies to Rhetts Syndrome or CDD because I don't have enough direct experience of those disorders, even though they are also Autistic Spectrum Disorders.

Myth 1: ASD kids are Loners

Submyths:

ASD Kids Don't Make Friends

ASD Kids Can't Make Friends

ASD Kids Don't WANT Friends

These myths seem all to be predicated on a single incorrect assumption: That an Autistic spectrum disorder only impacts introverts (and is then compounded by another assumption that introverts don't want or need friends). Extroverts seemingly get off scot free in this myth. You know, if that were true, we could shortcut a lot of the research and just concentrate on the differences between the introvert and extrovert personality. That way, we would probably have Autism solved in about three years.

But Autism does not discriminate based on personality. Extroverts are just as likely to be impacted. The difference between introverted and extroverted ASD kids is that the extroverted kids will attempt way more social interaction. They just usually go about it all wrong!  Joe's preferred method of initiating play when he was a non-verbal little tyke was to charge up to an unsuspecting kid and bodyslam him/her.  Needless to say, this method -while an excellent way of gaining someone's attention (and their Moms!),  was a poor way to initiate positive interaction. Joe needed to be taught how to approach kids and talk to them. It was not something he inherently understood, as most regular kids do.

The very sad thing about this series of myths is that they can become self-fulfilling. ASD kids can become frustrated after repeatedly failing to connect or bond with other kids. Or they can become sensitive to other kids' remarks about them being "weird" (etc. etc. ad nauseum). Because let's face it: All kids can say mean things, whether intended or inadvertent, and eventually the ASD kid just won't be able to take the rejection and pain, and will opt to stay indoors and play videogames.

Another thing that can happen -especially to the introverted ASD kids, is that they realize a little later in their childhood that they actually DO want friends, but starting late, they have difficulty breaking into the interactions, social circles and cliques that have developed amongst their peers while they were off in AutismLand.

Despite all this, many kids with an ASD can and do make friends.  They often tend to have one or two close friends rather than a large circle of friends, and they generally tend to prefer one-on-one or small group activities as opposed to large group activities.  I am generalizing here (which I hate); there may well be the social butterfly Autie out there who has lots of friends and thrives in large groups!

 

Myth 2. ASD kids have no sense of humor

Submyth: ASD Kids Don't Smile or Don't Really Laugh.

Yeah, right! The kid on the right,who is trying to "sneakily" smoosh the icecream into his sister's face, is autistic.

Many ASDs kid do have a good sense of humor and often respond very well to humor from others. Many of these kids will have quite a dry sense of humor, and while they may not get certain jokes, they can floor you with some other forms of wit: including sarcasm! (I know! Free mythbuster! Some ASD kids understand and use sarcasm!)

ASD kids do laugh and smile. They just may not laugh or smile at you.

Get over it.

Myth 3. ASD Kids Can't/Don't do Sports

While many kids with ASD can have problem with muscle tone and hand/eye coordination, some can be quite sporty and coordinated. Remember Jason McElwain, that kid who scored all those points in basketball?

Of course, a lot depends on the sport and the support of the team and coaches, but having Autism does not mean one is automatically excluded from all sports, ever.

 

Myth 4. All ASD kids Have Special or Amazing Talents (like Rainman)

Submyth: Aspie Kids are "Little Professors"

Wrong on both counts. It is perfectly normal and acceptable to have Autism and NOT have any super savant skills. Yes, some ASD kids have great memories and splinter skills at directions or math. However the estimated number of true Autistic Savants is very small indeed. it is thought that there are approximately TEN (10) individuals in the entire world who are are true savants.

Some ASD kids are very smart, and some will appear very smart when talking about their special interest, but in truth, many ASD kids simply have a regular IQ with a hearty side of Autism.

And some are mentally retarded.

And while many Aspies do use language a little differently than the general population and many will talk your ear off about all sorts of things from lightbulbs to the Milky Way, Aspie kids are kids first and Aspies second. It is a mistake to forget this.

Myth 5. ASD kids Have No Empathy

This myth is bullshit, pure and simple. ASD kids can and do have empathy. A lot of the time their problem lies in determining when empathy is appropriate, because they have such a hard time reading facial expressions and body language. So while an Autie may understand a very clear signal, like crying, he may misunderstand a more subtle (to him) signal, such as a grimace of pain. Once they gain some skills with regard to reading people (or have a situation explained to them), some ASD kids can become remarkably empathetic. I talk a little bit more about this here.

Myth 6. ASD Kids are a Result of Bad Parenting

More bullshit. Many parents of ASD kids also have neurotypical children. So how can that be explained?  Both parents just spontanously decided to use a completely different parenting style on the other kid(s) Think about it. That theory just makes no sense.

Myth 7. ASD kids are Not Affectionate.

Not true, although how they show affection can vary hugely:  Contrary to the sterotypes, some ASD kids can be huggy and kissy.

 

However, most will relate to people differently and will show their affection in ways that are not easily understandable to a neurotypical... anyone.

For example, many ASD kids may relate to people through objects. An ASD child may show you huge favor or affection by giving you something special (to him) or by allowing you to hold or stroke their favorite thing. You just may not appreciate the gesture (which in turn might insult the child, and we are back to the self-fulfilling thing again).

Myth 8. All ASD Kids are Touch Adverse

It is true that some (many) Auties are touch adverse, because of tactile defensiveness.

Yet even the touch adverse kids may like certain kinds of touch. Grace used to jump out of her skin if you gently touched her or even if you brushed against her, but she loved to be held tightly or massaged. As Temple Grandin said "light touch is alerting, deep touch is soothing".

 

Myth 9. ASD kids Don't (Can't) Tell Lies

Most can and will. However, they usually stink at it.

 

Myth 10: ASD Kids Don't (Can't) Make Eye Contact

That whole "no eye contact=autism" equation is a TOTAL myth. For starters, bad eye contact is not exclusive to Autism and is not a hallmark of the condition. I don't have Autism and I had a problem with eye contact as a kid. Heck, I didn't learn eye contact until a Dublin street musician taught me the value of it one summer afternoon when I was 19 (...and yes (Rob) That was all he taught me). I never saw him again. I don't even know his name -but I am forever grateful to him.

And while it is true that many ASD kids can have problems with eye contact, many can develop the skill (or learn to fake it) with training or with people they trust.

And there are some ASD kids who can and do make great eye contact with almost anyone. So don't let me hear anyone say "He can't be autistic because he makes eye contact". It is not a hard and fast rule.

oh and ...Hello?

 

I remind you again: If you've met one kid with Autism, you've met one kid with Autism.

 

Bonus myth: You Can Tell if a Kid Has Autism (or Not) Just by Looking

If you go back at the photographs in this post, -just the pictures, not the text (because the text will tell you). Can you tell just by looking, which kid or kids have Autism and which don't?

Be honest: You can't.That's why it is called a hidden disability.

So the next time you see a "spoiled" and screaming child while out-and-about, please remember -before you judge- that the child could have a hidden disability such as Autism.

Please Note: All text and images in this post are copyright (c) One Sick Mother, 2001-2010 and may not be distributed or re-used without express written permission from the author.

"Our Race"

It's a long complicated story, but Joe has been having an ongoing misunderstanding with two typical girls at school. These girls were assigned to 'buddy" one of Joe's friends, we'll call him Danny, a special needs kid who is lower-functioning than Joe. The problem is simple: Joe always took it upon himself to look after Danny, who he has known since the first grade. Now here they are in middle school and the status quo has changed. So it's a little bit of a turf war, a little bit of hurt confusion ("why didn't  Mrs P ask me to look out for Danny? I've been doing it for years) and a lot of pre-teen bickering.

Joe was talking about this to me recently and he came out with the statement "I think I'll just stick with people from my race from now on".  OK, that raised a huge red flag with me: Race? HELLO?   So I asked Joe 

"what do you mean, 'my race'?   

"Oh sorry Mom, I mean 'OUR race'"  (Nope.  The red flag didn't go anywhere with that!  In fact it climbed a little higher.) I tied again:

"You mean Irish people?"

No. I mean people like us. People who are different.

"Ooooohhhh" (phew)

...And we started to talk about differences and acceptance.  It's funny how Joe is almost a reverse snob. He will merrily accept kids with all sorts of difference and special needs, but he has -on more than one occasion- made some exclusionary comments about "normies" -which makes me laugh a little because the word I use too, and I'm pretty sure I never used it around him (maybe he is a reader?).

I am working on this with him, and I expect it will take some time for Mr Black and White to start to see any glimmer of grey.  But he will.

I hope he does.  After all, not ALL normies are awful!

Responsibility

I always thought that taking responsibility was a learned skill. I didn't think it was something people did automatically and without life lessons. Or at least not without a lot of nagging.  Mostly from their mom. I have had to remind my kids many many times that X, Y or Z didn't "make them do it" that "doing it" was their action alone and  that is why they were the one being punished.

However, sometimes Joe surprises me. Sometimes he will come right our and accept responsibility for something he has done. He 'confesses'. I sometimes wonder if he is being super-smart and he knows the best way to defuse the mom-bomb is to disarm her first by admitting to the mayhem before she discovers it for herself. But although I would love to think that, I honestly don't reckon his social skills are up to that level.

I think he just can't help himself.  That he just blurts it out. Maybe the guilt of keeping a secret is too much for him?  Or maybe he can't stand the suspense involved in waiting for his "crime" to be discovered?  I don't fully understand the mechanics of this process with Joe, but I do know that he often takes responsibility for stuff; and way more than he should. He has apologized when I slept in and made him late for school.  "I'm sorry Mom. I should have woken up."

"But I'm the one with the alarm clock!"

My notion of reresponsibility and what it entails has been challenged to the extreme in the past few weeks by a small electronic device:

Joe's cellphone.

It became apparent after a few weeks of middle school that if we wanted to prolong my life, we would need to get Joe a cellphone. The point was that he could contact me if he got lost (which had happened several times). I decided to go with a pay-as-you go unit, so he had minute counts and other stuff to monitor, to remind him to be responsible and not go nuts texting everyone in the directory. This is quite an affluent town, and a lot of kids have fancy hardware and unlimited plans. However, I wanted to teach him the value of a minute, if not a dollar.  You know, to be responsible.  And we are not affluent, anyway.

Joe liked the phone, but not the responsibility of owning it.  (I didn't realize just how much responsibility owning a cellphone entails.)  Although I had assured him that the phone is insured, and no real harm will be done if anything happens to it, he is ridiculously protective of it. He keeps it switched off to preserve minutes and battery life, despite my telling him several times that this defeats a lot of the purpose of having it, as I cannot call him if I am running late, because then we have conversations like this:

Joe: "Mom, where are you? I've been waiting..."

Me: "You only just turned your phone on now so you could call me, right?

Joe: "yes"

Me: "Well, I have been trying to call you for the past 10 minutes to tell you I am stuck in traffic and to catch a ride with Mrs S."

Joe: "But Mrs S. left already..."

Me: ...(who knows that Mrs S only just left and am therefore too busy biting the inside of my cheek to utter anything intelligible, much less printable)

Me: (takes a deep breath)

Me: "I'm on my way. DON'T turn your phone off after you hang up." (because if I forget to tell him that, he will turn it off)

Suffice to say, we have had a few Issues around the damn phone. It is about the responsibility of owning a phone. He hates having to remember to take it places, not lose it, turn it on, keep it charged, track his minutes, not get it lost/broken and generally take care of it.  It is a lot of stress for him.

This leads to me trying to pro-actively anticipate everything that might go wrong the the fecking thing and try to prepare him for it.

On the night we had the biggest 'phone' Issue (to date), it occurred to me that I had forgotten to show Joe how to put the battery back in. We have all dropped our phones and had the battery go flying across the room/ restaurant/ airport/ train station, right?  I figured (rightly) that if this happened to Joe he would freak out.

So I started to take out the battery.

Joe: "what are you doing, mom?"

Me: "I need to show you something"

Joe: "It looks like you are taking my phone apart"

Me: "well actually, I'm trying to"

Joe got very upset and walked into the adjoining room, out of my field of vision. I continued to remove the battery, struggling a little with bad fingers and a tight casing. When I finally got it open, I looked over my shoulder for Joe,  only to see him standing right behind me with a heavy musical toy held aloft in two hands, about to smash it down hard.

On my head.

It is really hard to explain the emotions you feel when you realize your beloved firstborn child was about to smash your head in over a mobile phone.  I was absolutely crushed.  I wanted to scream my head off and smash the fuckin phone against the wall.  But I didn't.  I got cold and stern and told him to Put. That. Down. Right. Now.  And he was in deep trouble.  Then I told him to finish his homework while I went into another room to cry and try and figure out what I had done that was so wrong.

I'm still not 100% sure. I know that in Joe's mind, the phone was considered the most important thing at that time. There were Rules about the phone, first of which was don't lose or destroy it. I had put the fear of God into him about keeping it safe. When he saw me taking it apart, he didn't know what else to do, but attack me to "save" it. (no it didn't occur to him to ASK me why I was doing what I was doing. He is after all, autistic).

You can fool most of the people most of the time.

You can even fool your mother part of the time

But underneath it all you are still Autistic.

I'm so lucky he hesitated. I was home alone with the kids at the time. He probably would have knocked me out (at least) if he had followed through with his plan.

Later, after we had both calmed down, and I had demonstrated how to replace the battery ("Ohhhh!"), I spoke with Joe about the incident, starting with the question that was foremost in my mind:

"Were you really going to smash that thing down on my head, or was it just a threat?"

"No. I was really going to smash in down"

(oh.)

(sometimes Aspie honesty isn't all it's cracked up to be)

I then tried to explain to him that mobile phones are ten a penny, but his mother only has one head, which is unique and irreplaceable, but he didn't get it. He kept saying stuff like "But you told me to protect the phone. I didn't know what else to do!"  Then I gently explained that he could have ASKED me what I was doing, instead of jumping to conclusions which could have led to pretty serious consequences.

"Oh." 

(my thoughts exactly)

We talked some more, but the upshot is this: Joe still doesn't fully get where he was wrong. He is hyper-responsible in some areas, but oblivious in others. He doesn't have the ability (yet) to prioritize life over possessions, or that it is sometimes appropriate to break Rules.  

I am hoping he will gain these skills in time, and without anyone getting seriously hurt.

ahhhh... Parenting is such fun!

Power

A few months ago, a transformer blew on our street, setting fire to a tree right outside our house.  Since then, our street has lost power four times. Just our street.  As we are the first house on the street, we can clearly see that the houses behind us and on the cross-street right next to us are all merrily lit.  This is frustrating.

The first two times the power failed wasn't a problem at all. It happened late at night, and power was restored by morning. The kids didn't even know it had happened. Himself and myself, having been raised in Western Europe in the 70s, and having experienced the great Northeastern Blackout of 2003, are reasonably well prepared for short duration power cuts and weren't phased at all. 

Then a couple of weeks ago, the family arrived home after an evening at the movies to discover the power had failed again. The adults immediately went to the locations where flashlights and candles are kept, but the kids were completely freaked out.  Particularly Joe. Aspies don't like change, and an unexpected change to his safe place definitely unnerved him.

Luckily there was a charged laptop available, as so we all sat down with a movie to approximate normality for awhile.  I didn't realize how upset Joe was by the whole deal until he asked to sleep in our bed. He NEVER asks to do that. Joe loves his bed and his personal space.  So the kids and I slept in the big bed that night, while poor Himself, dispossessed,  slept in Joe's room.  The power was restored a few hours later, and nothing more was said, although each kids quietly received an extra flashlight to keep by their beds.

On Friday evening after dark, the kids and I were alone in the house and the power went out again. I called out to them to stay put, got the flashlight and enlisted their help in lighting the candles.  Himself came home shortly thereafter and wisely suggested a trip to the movies. After the movies, Himself, who was having good ideas that day, suggested we drop into Target and pick up some camping lanterns.  We got a few small lanterns and one big one. We also got a couple of glowstick/flashlights thingys for the kids. 

The lanterns were an inspired idea. Turns out Joe was freaked out as much by the naked flames of the candles as he was about the dark house, causing a lot of conflict (you blow out the candle to neutralize the threat of fire, it gets darker).  So he relaxed after we got the lanterns on and the candles off. He even announced that he wanted to sleep in his own bed.

I realized when I saw him wandering around on his tippytoes (he is a toe walker) with a lantern in one hand, a flashlight in the other and a glowstick around his neck, that his staying alone was probably a bad idea, but I said nothing.  As Grace and I were getting ready for bed he changed his mind:  "I think I am too scared to sleep in my own bed. Does it make me a chicken if I want to sleep in here after all?"  I said it didn't make him a chicken. It made him normal. And honest. So we all snuggled into the big bed, where I told them stories from my childhood and confessed that I liked power outages because I never got an opportunity like this otherwise.

Later, as I heard Grace's breathing become slow and peaceful in one ear, and Joe's slow and serious in the other, I thought back to his change of heart about sleeping in his own bed: I think he thought he had somehow failed by admitting he was scared, whereas I know it had been a kind-of breakthrough for him.

How can I explain to an eleven-year-old that knowing your needs and limitations is not weakness, but is a different kind of power?

Only An Aspie... ;)

Joe returned home late yesterday, having stayed on at school for the Games club (he did warn me in advance that he was planning to do this).

Me: "So Joe, how was the games club?"

Joe: "I didn't go to the games club. It was too crowded. I went to Mathletes instead"

Me: (who would rather stick a fork in her eye than volunteer for Math): "So how was Mathletes?"

Joe: "It was fine."

Me: "Are you going to do it again next week?"

Joe: "Sure!"

His Grandad would be so proud...

Other People's Shoes

I think generally,  people understand that most people with an Autistic Spectrum Disorder (ASD) cannot (easily) put themselves in "another person's shoes". That is, they have a hard time understanding what that other person may be feeling or thinking and how things may be for that person. Many cannot even conceive of "walking a mile in your shoes".

 

They are stuck in their own shoes

My son Joe, who is (high functioning) Autistic, would probably pass by someone who had collapsed on the street, thinking that person maybe chose to lay down right then and there; and if that is the case, who is he to say anything?  An Autie such as Joe doesn't tend to factor in things like "normal behaviour" or "likelihood" into these scenarios, because to him, NTs are all so weird anyway. There is no telling what we might do! So who is he to question?  However, if I explained to Joe that the person might be in trouble or distress, he would move Heaven and Earth to help them if he could.

Perspective is a funny thing.

Of course, most NT people in the same scenario would instantly figure there is something wrong -even if the person had chosen to lay down right there! (OK the odds are that they didn't. But I'm just saying...)

Most of us non-autistic people, think we have good... whateveritis you want to call it: Theory of mind, empathy, perspective-taking. Most of us think we can place ourselves in another person's shoes and understand where they are coming from.

Sometimes we can. Sometimes we can't.

I have been thinking about this a lot recently. One of the comments on the piece I wrote about Caster Semenya was written by a man trapped in a woman's body. I tried to imagine what that might be like (and I tried to imagine if I were trapped in a man's body).  I couldn't do it. 

I can only imagine my body: My "shoes".

I didn't realize I was quite so unimaginative until now. Now, I know that some experiences cannot be imagined or described, but I thought I could manage simple enough ones like "male" and "female". 

But I can't because they are not that simple at all. At least not for humans.

I remember years ago, reading an interview with Stevie Wonder and he; although born blind, was saying that he does "see" things in his head. Of course he cannot describe them to anyone, having no knowledge of a sighted person's concept of (say) "color"; indeed, having no sight references at all. So we cannot know what he sees. I do wonder if he shares it, wittingly or unwittingly? I wonder if his vision colors (pun intended) his music?

Interesting, no?

Recently, I watched the season premier of Season 6 of "So You Think You Can Dance", which is one of my favorite shows. Allison Becker, A deaf dancer auditioned in Phoenix. She was great.  What got me was that the judges were so flabbergasted that she was great. They danced (pun intended) around the core issue until Mia Michaels finally came out and said in a somewhat roundabout way what everybody else was thinking (I'm paraphrasing here): 

"Why do you (how can you) dance when you can't hear the music?"

The answer was simple.

"I hear it differently"

Then Nigel was waffling on about wanting to see how she would do in choreography and again she just said

"I'll be great"

And she was. She killed the choreography. Here is a link to the video.

(And although somewhat off topic, I have to give a shout-out to the same-sex ballroom couple, whose video is here.)

 

There are some shoes we cannot occupy. Some scenarios we cannot understand, no matter how we try. We cannot understand how a deaf woman hears or a blind man sees. We cannot fully get what it is like to have Autism, ADHD, Dyxlexia or OCD. We can try and understand it on an intellectual level, but we cannot truly get it.

In a funny way, I thnk Joe has an advantage in this over me. He KNOWS that he doesn't get other people. Therefore instead of trying to understand them, he usually just accepts them. He has no problem at all with the concept of a deaf dancer. She's deaf, she dances: So what?

Whereas I, who consider myself an empathetic person, find myself trying to understand instead of simply accepting. And then I realized that I have been guilty of "Murakab"  in my attempt to teach Joe about putting yourself in other people's shoes. I had assumed that I could always do it, and that one always should do it. I didn't fully realize that there are times when one CAN'T do it. I didn't fully understand that: Hence murakab, which means 'complex ignorance"; I didn't know that I didn't know (as opposed to simple ignorance, where you know you don't know).

I have now realized that there are times when Joe's approach is better than mine. There are times when I cannot -simply CANNOT place myself in another person's shoes. That does not mean their experience is invalid (not that I ever thought it was). It just means that instead of trying to project myself onto them, I will choose to accept them on blind faith, like Joe does.  That isn't easy for me.

Having just said that, however,  if I ever do see a person collapsed on the street, I will not assume they chose to lie down and take a nap.

(All the art in this piece is by Renee Magritte, 1898-1967)

Resisting Urges

We've all had to resist urges in our lives: That urge to blurt out something funny but inappropriate (although I personally have probably failed to resist this urge more than I have succeeded. I blame ADHD). The urge to just drop everything and take a plane to somewhere sunny; the urge to push everyone out of the way and jump to the front of the line. The urge to tell your mother-in-law just where she can put her cat plates. The urge to beat your daughter's orthodontist to a bloody pulp with your cane.

Oh. You've never had that last one?  That must just be me. 

...yesterday.

As I mentioned before, Grace irretrievable lost her palate expander while we were in DC. I thought they would just make a new one from the old mold, but as several months have passed, they decided to re-cast her mouth and make a totally new one.

She went yesterday to have it fitted. She immediately complained that it hurt, so the orthodontist loosened it. She still said that it hurt, and they were having trouble getting it to fit. Finally, he asked her to point to where the problem lay? She pointed at the very top of her palate. The unit was too high and was digging painfully into the roof of her mouth. The guy basically said that he couldn't adjust that part, but she would "get used to it". I saw Grace's hands go to her eyes in a gesture that is characteristic for her: one in which she quite literally tries to hold back tears (I figure she read that expression in a book and this is her Aspie implementation). 

Time to get into mamabear mode:

"You know, I have seen her dislocate a hip and not cry. So if she says it hurts, she isn't being a drama queen. It hurts." Their attitude changed at once and the expander was removed.  The assistant said something like "That is good to know, because my daughter is the opposite and will cry at anything". And we had a little discussion about which was worse (we both agreed that "drama queen" is worse, although you usually can pick out a cry of real pain instantly).

In an attempt to troubleshoot (which used to be my profession), I asked the orthodontist to check if he had received the correct unit? I know these things are custom made. I wondered if maybe there had been some mixup and we had mistakenly gotten an expander that had been cast for someone else? He didn't check. He just shook his head and said it was the right one. OK maybe he had checked already (but he could have told me that). I mentioned that the expander did look much "taller" (and a completely different shape) than the old one, but as we didn't have the old one for comparison, it was just my word, which apparently accounted for very little

Then he got out the dental power tool and tried shaving some stuff off the top of the expander. But there was not much to work with, so it didn't help.  Finally he admitted defeat and said they would make a new one.

"So you are going to re-cast her mouth?"

"What (as if this was an alien concept)?"

"Well, I can't help but think if a new unit is made from the same mold, that unit will have the same problem, right?"  He looked confused as the young assistant nodded vigorously.

So they re-cast her mouth.

And afterwards I took her to the smoothie place to get an overpriced smoothie as a reward for not punching the orthodontist (though I didn't phrase it like that).

I had one too.

More Bus Drama

My regular readers may recall that last year, I had to petition the school district to make a new school bus stop nearer to my home. This is because my children and I all have Ehlers-Danlos Syndrome, and I was afraid that the walk to the old bus stop, which involved walking on a street without a sidewalk and crossing two streets, might be dangerous in icy weather. If you have EDS and you slip on ice, there is a very good chance you will dislocate at least one joint (and not be able to get off the ground unassisted).

So last year, I had a series of battles with the district and the doctor's office to get it all sorted out. You can read about (most of) that here and here.

Last week, around Wednesday or Thursday, I realized that I had not received the little yellow cards that tells me the bus route details. I was pretty sure Grace's would be the same as last year, but Joe starts middle school this year and the times/routes are definitely different.

So I called the district to find out the routes.  "Your daughter is being picked up at 8:56 am at the New Stop (i.e. right by the house).  Your son will be picked up at 7:38am at the Old Stop (i.e. up the street, in Potential Dislocation Land)"

"Um... why are the stops different for both kids when I provided medical documentation last year for them both, stating that they needed to be picked up closer to home?"

"No. the documentation you provided was only for your daughter."

"No. I'm, pretty sure it was for both (but could I find my copy of the letter right then?  No.)"

"Well, you'll need a doctor's letter for your son.  ...you need one every year anyway because medical conditions change" -This made no sense because they had accepted last year's letter for Grace, but I kept my mouth shut on that point. Instead I said.

"This is genetic. It won't change. He was born with it; he'll die with it. But OK. I'll get a doctor's letter."

I hung up.

"I will die with what, Mom?"  (Oops! I hadn't realized that Joe was right behind me!)

"Ehlers-Danlos Syndrome."

"Oh. OK"

The phone rang a few minutes later. It was the district. They had found the original doctor's letter, and I was right: both children were mentioned by name therein. They would change Joe's stop to pick up at the same location as Grace's. I have to say, of all the offices I deal with in the District, Transportation are probably the nicest.

Unfortunately, the bus company is a whole 'nother story.

So day one of Middle school: Joe and I were out at 7:30. I wasn't sure if the new stop would pick up before or after the 7:38 stop down the street, so we went out early in case it was before (Joe, bless his little heart, had been all prepared: packed, washed, brushed and shined since about 7:10).

We saw the bus arrive at middle of the street and then turn down our street, away from our house, stop for a microsecond at the 7:38 pickup point and then take off in the wrong direction, away from us. OK maybe that was a different route. We waited just in case.

It wasn't a different route.

At 7:45am, with Joe wigging out about being late on his first day of middle school, which would -in his mind- start some kind of chain reaction to Armageddon; I loaded both kids in the car (poor Grace had been hauled out of bed early and asked to get dressed -just in case)  and dropped Joe off on time.

That afternoon, I waited for Joe's bus, which is about an hour ahead of Grace's. No bus went by my house.  I called the bus company. 

"My son isn't home yet. School finished a hour ago and I'm worried"

The lady was breezily unconcerned. "Oh the second wave of buses is just leaving his school now. He is probably on the second wave."

She clearly doesn't know anyone with Asperger's Syndrome. NO WAY was Joe on the second wave! I tried to explain this to her, but she blew me off as an overanxious mom.

Fuck YEAH I was overanxious! My kid was MISSING!

I started going through the elementary school phone book, trying to think of other people who would be on the same route and would have Middle school-age kids to see if these people had received their kids home OK. But the only person I found wasn't picking up.  I was about to call the district when the door opened and Joe walked in, out of breath and sweating.

I turns out, he had been on the first wave bus (of course) and when the bus had breezed by our stop, he had stayed on, thinking maybe it would go around the block or something. It hadn't, and as he got farther and farther from our house, he realized they bus wasn't going to stop for him. So not knowing what to do (although I have pounded "tell an adult" into his brain -apparently pointlessly -since he could vocalize),  he got off several blocks from our home and he ran back to our house, afraid that he was somehow in trouble for the bus's failure to stop.

*sigh*. That kids takes too much responsibility on himself. Apparently this is common with Autistic Spectrum kids.

So I called the district, thinking maybe they hadn't sent the paperwork to the bus company. They had. The lady said. "I even put 'medical' next to it in big letters, so they would know".  I believe her.

So I figure the afternoon bus driver can't or won't read.

You know, I just wish these drivers and administrators really understood the impact this sort of nonsense has on special needs kids. It may be a line on a list or a simple clerical error to them, but to the kid, the perception is (rightly or wrongly) that it is HUGE and potentially life changing. 

And somehow all their own fault.

Or their mother's fault.

Or both.

Joe spent quite some time stressing about the bus situation last night. I reassured him as best I could and told him that I would work with the district and the bus company to fix things, but like last year, it might take a few days to get it right (and don't get me started on substitute drivers, but I didn't go there). Joe got it -probably better than most kids would. "you shouldn't have to do that, Mom"
"Yes I should. It's my job. And if I have to stay on the phone all day to fix this, I will."

I really hoped today would be better than yesterday. As I made his lunch at 7am this morning, I wished and hoped that it would be.

We went out again at 7:30; waited, and again, we watched the bus come to the middle of the street, then turn away from our house. This time I was ready with my trusty phone in hand. I called the bus company, while frantically motioning for Joe to NOT run down the street, to chase a rapidly diminishing bus.  The bus company put me on hold for several minutes. Then they told me "a bus will be there in a couple of minutes to pick him up." Not YOUR bus:  A bus.  So they had screwed up. Again.

Well, but this time it was past Joe's 7:45 cutoff for having a meltdown. I hung up and he was pacing and flapping, all the time talking about fish:

"...so you had the fish and you just didn't reel it in. And in the meantime, I am starving and Grace is starving and you just won't reel that fish in..."

"What do you mean, Joe"

"it's an expression."

"I get that, but I don't understand the expression. What's the fish? Is the bus the fish?"

"Yes. ...No. I don't know.... Look, it's just an EXPRESSION!"

Joe understands about expressions and figures of speech. For years I have been telling him to 'keep his hair on", to "hold his horses" and that he is "on thin ice".  He understands this stuff a lot better than many Auties/Aspies his age.  But this making up of expressions is new to me and this particular autistic expression of speech is completely opaque to me; -to both of us, apparently. Maybe

he knows what he means somewhere in his brain. But I think he just got several metaphors mixed and I somehow ended up being the bad guy with a fishing rod and starving children.

And he managed to make it sound like that had been my sole ambition in life.

Eventually, an empty school bus arrived and stopped on the main road at the side of our house. I asked the driver: "Is this the spot where you will normally stop? Because the elementary school bus usually pulls around the corner out of the traffic?" The driver shrugged.

I don't know. I'm just filling in for the regular guy, who missed this stop." (Oh well, at least he was honest).

I walked back into the house at 8am, mentally exhausted.

I am now wondering what will happen this afternoon?  Where will Joe end up?

And I am also seriously considering the statement he made last night. "If I had a cellphone, I could have called you when the bus didn't stop. Maybe I need a cellphone, Mom"

Maybe he does.

I wonder if I could charge the cost to the useless bus company?