Never Let Him See You Sweat

I experienced a small victory yesterday.  Nothing monumental or even all that noteworthy in the greater scheme of things but with Josh, any victory is worth celebrating, so think of this post as a literary fist-pump.

There is always a fine line with Josh.  Things might seem ok and you might be lulled in to a false sense of security because of this but he's pretty much on a tightrope day-in and day-out.  His mood can change faster than you can blink and there are so many factors that can contribute to his ability to maintain composure or not, it's almost impossible to control.  I try though, believe me, I try. 

I think because of how traumatic it was when he was younger in going through the really monstrous tantrums (see "That woman with the screaming kid"), I have this survival instinct that kicks in now whenever it looks like he might be heading in that direction - anything I can do to keep it from happening, I will do.  All within reason though, and often there are things that he wants me to do that might at first look like they will help but I know from experience that they will only feed in to his down-cycle.  There is this balance that I try really hard to maintain. 

Which brings us to yesterday afternoon.  In the "Do You Want Fries With That?" post I talked about his constant desire for fries and how we frequent the local drive-throughs more than I would ever imagine under normal circumstances.  I won't do it every day though, despite the fact that that is exactly what he wants, there is a limit to how much I am willing to indulge this obsession.  It's a self imposed limit to be sure but all parenting decisions are, there's no science to this.  We had stopped to get him fries on the way home from school the day before.  So, I was not planning on stopping yesterday.  He had other ideas though and I could tell from the moment his teacher brought him out to me after school that this was going to be a tough ride home.  "French fries" was the first thing he said to me.  He gets one of two responses from me when this happens, either "yes, we're going to get french fries now" or "we're going to get french fries *insert time frame or day of the week here* ".  So yesterday it was the latter.  He wasn't going for it.  "French fries?"  "we'll get some this weekend, ok? right now we're just going home"  Yesterday was one of those days when I suppose it's all he'd been thinking about.  He continued.  "French fries?"  "Josh, we'll get french fries sometime this weekend, right now we have to go home".  He persisted about a dozen more times. My response was the same every time.  It has to be, and there can be no hesitation either.  If he has any indication that you might be wavering, that there's a chink in your armor, any weakness in your resolve, he will exploit it to the fullest extent of his abilities.  You will go down.  I know this about him.  It's happened enough, I should.  There are days when it is harder for me to be steadfast, depending upon what else might be going on.  He knows it.  He will crank it up 10 notches if he thinks he can break me. 

Even if you don't have an autistic child, you might be familiar with this if you are a parent and your kids have been through toddler-hood.  Toddlers are excellent at this mode of operation, their skills in breaking down even the strongest of wills are legendary.  Most of them, anyway.  They will dig in for the long haul and wear you down until you are left whimpering in a corner if you're not careful.  Josh has taken these skills and honed them over the years, fine tuned them to the point of being a master.  I think most major criminal or terrorist investigations would be settled much faster by simply putting any suspects alone in a room with Josh without access to Blue's Clues or fries for a few days - I'd be willing to bet they'll be telling you if Bin Laden wears boxers or briefs within hours (I'm probably going to end up on some watch list for that... ).

Back to our story - I didn't have Zach with me yesterday, he'd finished school at lunch time because yesterday was his last day, so he was at home.  It's always much more stressful when Zach is there because I know that Josh will get out of his seat in the car and go after Zach to pinch him if he's really mad that I am not stopping.  I don't want Zach getting hurt or to have to deal with that, Josh knows this, so he uses it to its full potential.  But no Zach to worry about this time so, I was feeling stronger in my resolve.  I remained calm and consistent in my responses to his repeated requests for fries.  Now, even if Zach is not in the car with us, Josh will still climb out of his seat if he's upset enough, sometimes he will even try to come after me with the pinching while I'm driving.  This is bad on so many levels.  So on days when I have not stopped for him there are times when I have to pull over somewhere to try to get him back in his seat and buckled up again.  There are not very many safe spots for me to do this between his school and home so it's tricky, not to mention wildly stressful.  There are a couple of things that he will accept in lieu of the fries though, sometimes, under the right conditions.  M&M's, or Skittles candies.  Giving him these instead will only work if a. the passage of the candy to him is continuous, and b. we don't have to sit for more than a second or two at any lights.  Is feeding him M&M's or Skittles really any better than just stopping and getting him fries again?  Probably not.  Seriously, don't throw logic at me, this is not a logical world I live in!  Whatever, it makes me feel better to know I have not fed him fast food fries 7 days in a row. 

I cannot just give him the bag of candy and let him take them himself because despite the fact that he can dismantle a box spring with his bare hands and move his mattress around the house, he cannot seem to hang on to a bag of anything without dropping it on the floor of the car.  Great, then he'll be out of his seat scouring the floor for Skittles.  So, I have to be the purveyor of the candy.  This means putting my right shoulder through some interesting contortions since his seat is directly behind mine. 

Yesterday, he was on his game.  He's like a machine, the requests for fries coming one after the other without regard for my response.  He was determined and relentless.  The other rules of engagement here are that you cannot let him sense your fear or stress.  He picks up on it, feeds on it, and steps it up, his voice getting louder, higher pitched, the humming in between requests - all warning signs of an impending, full-on tantrum.  You cannot ignore him either, you will get the same result.  I was prepared.  We got in to the car, I told him he could have M&M's instead, so he switched in to M&M request mode.  I've barely handed a couple back to him when he's asking for them again.  I know I have to maintain the supply or it's over.  Driving while handing candy back to the child immediately behind you isn't always easy, also, I think I may have a rotator cuff injury.

We're on our way, he's ok so far, I'm handing the M&M's back with every request.  There are several lights we have to go through on the way home.  Getting stopped at any of the first three is pretty much a death sentence on his staying tantrum-free if we are not stopping.  We made the first light.  The second is the real test, it is a very busy intersection with a very long light - and the establishment where we will stop for the fries if we are doing so, is right there.  Taunting us.  I'm very familiar with the timing of the lights so I wasn't sure if we were going to make it or not.  Please please please.... it turned yellow just as I hit the intersection.  Yellow isn't red.  I went through.  He sees the home of the fries, I pass him back a handful of M&M's even before he asked, the car is moving, he doesn't lose it.  Thank you thank you thank you.  Ok, one more light, wow, made it through that one too, a very rare event.  The stars must be lined up just right.  I keep the flow of M&M's constant.  When we get to a certain point on the way home, he stops asking for them so much and I can relax.  We made it.  Home without stopping for fries, without having to pull over to get Josh back in his seat only to have it happen again 5 seconds later, without getting pinched or having the air-vents (what's left of them, anyway) kicked in any further, without worrying about getting stopped because someone saw Josh climb out of his seat and go after his brother or me, just home.  Josh with a belly full of M&M's, me with a small sense of victory and relief. 

Until we have to do it again on Monday.


Paws and Effect: The Service Dog Story, Part 2a

Alternative title: Why I will NEVER fly with Northwest Airlines again, ever. 

I may have subconsciously been putting off writing this second part because to this day, this is a very difficult memory for me but it's part of our story so I need to do it.

So we got Ellie's picture and note and were beyond excited.  I just couldn't stop thinking about what a difference she was going to make for us and Josh, plus I love dogs, so I was like a little kid waiting for Christmas.  Now, getting your dog requires attending a training program at the organization with your child.  This is true of both NSD and 4 Paws.  The dogs have already been trained, their new families need to learn how to work with them and all need a chance to bond.  If you are getting a dog that is trained to track, then the training is more extensive.   We had asked for tracking so this meant a longer training session.  They invite a certain number of families to each session as the dogs are felt to be ready.  We were set for March (2006). 

The training sessions for tracking dogs is 10 days long.  4 Paws asks that at least two adults accompany each child who is receiving a dog, so that there will always be someone who can be with the child while the adult who will be the primary handler can participate fully in the training process.  The children are a part of the process as well, especially during the tracking work, but their participation is not needed 100% of the time as is required of the adult handler.  Given that this is a program to place dogs with children of varying disabilities, obviously there will be times the child will not want or be able to participate.  At the time, Josh's father could not take any time off of work.  It was March, so school was still in and I was very reluctant to pull Zach out for that length of time.  I decided that I would just take Josh on my own.  This turned out to be a mistake, but at the time I felt I could manage.  Josh was also not very good about being with too many other people at that stage aside from myself, some of his teachers, and family members, so I just figured I would be best able to manage him and we didn't have a lot of options anyway.  After a little more than 2 years of working on this, I was also just so anxious to get him his dog, I couldn't bear the thought of putting it off any longer.  I discussed it with the director of the organization, told her we just didn't have any options at the time, and that I believed I could manage it.  She was reluctant and told me to continue to try to figure out a way to bring someone else along.  My mother was coming to stay with Zach and his dad so that she could help with taking care of Zach while Bruce was at work and I didn't have any friends or other family members that either were able to take that much time off or close enough to Josh for it to be helpful (didn't make much sense to bring someone if Josh was simply going to tantrum with them the whole time).  So I just decided I was taking him on my own. 

Then came the travel plans.  At that time, Josh was still fairly difficult in terms of public melt-downs and I was extremely nervous about how to manage him on my own with carry-ons, changing planes, and very specifically, security.  Josh is not someone who is capable of standing in a line for great lengths of time without dissolving in to a tantrum (if you haven't read my post titled "That Woman With the Screaming Kid", now would be a good time to do that so you understand what we're talking about here!).  I also knew that coming back, I would have all the same concerns but we would be traveling with the dog as well.  I knew I had to do a lot of planning and preparing.  I spent hours researching airline rules and regulations and policies regarding traveling with people with disabilities as well as service animals.  Did you know that there are "Helper Monkeys" ?   Seriously.  I came across policies relating to them in my research travels.  I have never, ever heard of a "helper monkey" before, let alone seen one in action but now I want one!  Anyway, helper monkeys aside, I figured I had enough info under my belt to make some calls once I'd made our flight reservations.  I booked with Northwest Airlines.  4 Paws is in Ohio, little town called Xenia, which is closer to Dayton and Cincinnati than to Cleveland, so I ended up on a flight that went from Seattle to Minneapolis-St Paul where we would need to change planes and get a second flight to Dayton.  I e-mailed the folks at Northwest Airlines customer service about my situation and was told that traveling with the dog would be no problem as long as it was clearly a service dog.  I also called them.  I know a lot of people like to request the bulkhead seats but I did not want those - I knew Josh would have his baby dose of Valium on board at least for the longer of the two flights and there was a definite possibility that he would want to sleep.  You cannot lift the arm rests of bulkhead seats, your trays come out of them so they are immobile.  I wanted to have the ability to lift the arm rests so that Josh could lie down more easily if he needed too.  The people I spoke to about it said that was fine.  I also asked them if they could have a service agent meet us in Seattle as well as in MSP, to help get us through security faster in Seattle and help me get us to our next flight in MSP, as our connection time was pretty tight.  They said they would do all of this for us.  I actually called them again a couple of days prior to our scheduled departure to make sure all was in place and they assured me that they had notes about it all with our reservation and everything was set. 

We arrived at the airport for our departure and upon checking-in, asked the ticketing agent about the service agent that was supposed to be meeting us, as there wasn't one when we got there.  She said she would check for us.  Josh was already upset because his dad had to leave us at the airport and I was starting to get a really terrible feeling in the pit of my stomach.  No agent.  Ticketing lady said she couldn't find anyone.  I told her there were supposed to be notes about this on my reservation.  She says she sees the part about the dog, wants to know where the dog is.  I tell her we will have one on the return trip but what I really needed now was someone to get us to the front of the security line because at this point Josh was in full-on melt down on the floor.  She said she would try to find someone for us.  I am livid.  But I have to deal with Josh so there is no time for me to let loose on Northwest right now.  I dragged him, literally, off to the side after she checked us in and waited.  And waited.  And waited some more.  Keep in mind that Josh was screaming the whole time.  On the floor.  This is a busy airport.  I'm getting those looks.  I know that each and every person who passes us is praying that we are not on their flight, and I didn't blame them, I was really scared about getting on a plane with him for several hours at this point.  I couldn't give him the Valium yet, that had to happen as close to flight time as possible because of how long it lasts, I didn't want it wearing off mid-flight, and really didn't want to give him more than one dose despite how small it was.  Still no service agent.  So, I steel myself, set my jaw as I do when I am pissed off and determined, and maneuvered my screaming son to the security line, people's looks be damned.  I decided if it got too disruptive security would just pull us up and put us through on their own, so whatever.  The one small miracle of this day would be that the line at that time was not very long, luckily for all of us. 

We got through security, me  still fuming, Josh is calming down a little as we are walking.  I look to see where our gate is...Terminal C.  Where the hell is Terminal C??  I find a map.  Oh, goodie, we have to take a train to get there.  OK.  I can do this.  I find the escalator to take us down to the transit level.  Josh loses his mind and starts screaming like I have never heard him before.  Wow... what the hell?  I realize as I try to get him to the escalator, that it is, the escalator that is the problem.  He had never done this before.  Mind you we had not been on too many in his life so there wasn't a lot of past experience to go on.  He was clearly terrified.  I looked around quickly for an elevator but couldn't see one in the immediate vicinity.  It was at this point I thought about just bagging it.  This was ridiculous, I couldn't even get to our gate with him.  I have a real stubborn streak (all of you who know me STOP SMIRKING!) though, and just felt that if I could get us to the gate, I could give him the Valium and he would calm down.  So we went in search of an elevator to get us down to the train.  Finally found one - note to SEA, you should really make handicapped access more ACCESSIBLE by having it closer to where people will need it.  We got to the train and made our way to Terminal Freaking C.  We get to the gate and I take Josh to the bathroom so I can give him the Valium.  This does not come in child-friendly liquid or chewable forms, for obvious reasons, so I had a small spoonful of peanut butter in a medicine cup in our carry-on, stuck the pill into a blob of it, and stuck it in his mouth (thank goodness he likes peanut butter).  He ate it, and we were set.  We boarded the plane and took our seats, which were perfect, no bulkhead and no one sitting with us.  We get settled, I can see Josh calming down already so I start to relax a little.  Flight attendant comes to me.  Says we are sitting in someone else's seats.  I show her my boarding pass which has these seats printed on it.  She is confused and goes back up front to pow-wow with the other attendants.  No more relaxing for me, that feeling is back in the pit of my stomach.  She comes back.  Tells me that someone must have made a mistake when we checked in because we are supposed to be sitting in the bulkhead seats.  Ok. No, we're not, I told her that I had specifically requested NOT to be sat there and explained to her why.  She goes back to pow-wow some more.  Back to me.  Well, the note we have on your reservation says that your son is disabled and our policy is that you are supposed to be seated in the bulkhead seats.  You're kidding me, right?  I DO NOT WANT THE BULKHEAD,  IT WILL BE WORSE TO PUT US THERE,  THESE SEATS ARE FINE YOU NEED TO TRUST ME ON THIS.  He's my son, I know what will work and what won't and I was told that none of this would be a problem.  Mind you, I had been told a lot of things by Northwest at this point.  Back for more discussion amongst her crew.  I am fairly certain that steam was actually coming out of my ears at this point.  My jaw was starting to hurt from how clenched I'd had it all morning.  I may have scared her.  She came back and said they would LET us stay where we were.  Oh, thank you, how kind.  Plane takes off, Josh is actually doing well, quietly looking at his books and watching Blue's Clues DVD's on our portable player.   I have a picture of him during the flight, I will put it up in the photo gallery after I post this.  For a couple of hours I let my jaw relax and was able to go back to being excited that we were really on our way.  Josh managed the flight really well, so that helped a lot.  We get off in MSP, a little late, so I knew we were going to have to really move to make our connection.  Was there a service agent there waiting for us as we got off to help us as there was supposed to be? Of course not.  How silly of me to think at this point that Northwest was going to come through on ANYTHING they had told me they would do.  So I told the gate agent what my issue was and asked where the next gate was.  I am not sure how many of you are familiar with MSP but it is a massive airport, I mean, really just enormous.  She tells me that our next gate is way the hell away in some other terminal and that we'd better hurry, because we hardly had any time.  Uh, thanks for the help.  She didn't call anyone, wouldn't get a cart for us, nothing.  Also, neglected to tell me about the inter-terminal transit system.  I had never been to MSP before and had no idea where to go except to follow the signs.  I think we only had about 15 minutes at this point.  I was beside myself.  I grab all our stuff, get Josh by the hand, and started running.  Really running.  Poor Josh, for a while he found this amusing but then he was getting tired, it was a long way and he is a little person.  I was dying, I had my purse,  and 2 carry-on's over one shoulder and Josh with the other hand.  People were looking at us.  Carts with older people on them would drive by us but none would stop.  One man even started laughing as we went by and made a comment about how we'd better keep running.  Why are people so horrible?  I stopped at a gate of a different Northwest flight along the way, desperate, sure we would miss the flight.  I asked the agent to call to our gate and please let them know that we were coming.  She wouldn't.  Why not?  She never really even answered me except to say no.  This was the same damn airline, is this really a problem?  Wow.  So we keep running.  We get to the gate as they are literally starting to close the doors and we actually got on the flight.  I am sweating, out of breath, so is Josh, I feel like I have been bulldozed both physically and emotionally.  Northwest not only failed to do any of what we had arranged for them to do, but essentially went out of their way to make things MORE difficult for us. 

We land in Dayton.  As I am at the rental car counter I realize much to my horror that on the way back we will be dealing with Northwest again, this time, dog in tow.  Or so I thought.

(Evil as I am, going to leave it at that for now.  Since it was clear that part 2 would have be divided in to an "a" and a "b", looks like this is going to be at least 4 posts for the whole story - told you not to hold me to 3!  Might even be 5, there is a lot to it). 

To Be Continued...


That Woman With the Screaming Kid

"Hi, I'm Sarah, this is my son Josh and we will be annoying you today."

There was a time when I wanted to make this announcement any time I left the house with Josh.  I refer to this period in Josh's life as the "dark side" - essentially the years of his worst behavioral/emotional issues thus far. 

We've all been there as parents and if you haven't yet, you probably will: the joys of enduring your child's melt-down, out-burst, tantrum, whatever you want to call it, in public.  Toddlers are fabulous at this.  Be it in a store, restaurant, plane, entertainment venue of some sort, no place is sacred, it's all fair game.  So most of you understand what it is like to be the subject of the negative attention this brings, the object of the judgmental scrutiny of others.  And we all do that too - judge people in these situations.  Even if you've been through it yourself, I'd be willing to bet that there have been times when you have encountered others in this situation and made some sort of judgement about the parent(s) and or child.  I know I have, even though of all people, I know I shouldn't. 

With Josh however, as with most things because of his issues, this was taken to an extreme.  From the time that he was about 20 months until he was close to 7 years old, it was pretty much a given that he would tantrum at some point when I would be out with him, no matter where we were going.  Joshua's tantrums were brutal, and I mean that literally as well as figuratively.  Not only would he scream, a very high-pitched, ultra-annoying sound, but he hit himself.  He would take his little hands, and either open or closed fisted would slap his ears from behind (back to front, as opposed to just clapping his hands to his head).  Doing this over and over and over would result in raw, bloody skin on the backs of his ears.  He would do this at school too.  I remember getting a phone call from the school one day asking me to come and get him because he had been tantrumming so much that his ears were dripping blood and the staff were concerned about the safety of the other children and themselves... meaning they were worried about blood-born diseases.  I assured them that he did not have AIDS or Hepatitis B, but picked him up anyway.  I also remember being told several times that his classroom staff had been asked by the principal to remove him from the classroom and take him to one of the portable buildings that was not being used, because he was too disruptive to the rest of the school when he would scream for so long.  My 3-4 year old had to be REMOVED from the school.  I'm pretty sure this kind of stuff was not in my instruction manual...

It got to the point where we had to do something.  I think the breaking point for me was one summer afternoon - and this was at home, not even out anywhere - Josh had been screaming for 3 hours straight.  Nothing I did seemed to help.  I didn't know what to do to help my son, and I remember sitting against the wall of the family room crying.  Zach who was all of 6 or so at the time, came to me with his two little neighbor friends to give me a hug and ask if they could help.  We talked to Josh's doctor at length and ultimately decided to try a medication that did not have any scientific proof for its use in these situations, but there was so much anecdotal evidence we had to give it a shot.  So we started him on Celexa, some of you might know that this is an anti-anxiety/anti-depressant drug on the market for adults.  Science or no science, within 2 days of starting him on it he stopped hitting his ears.  Just stopped.  The tantrums and screaming were still there, but he was no longer hurting himself.  I can't tell you the blessing that was and is to this day. 

The tantrums persisted though.  I could not get through a trip to the grocery store without his screaming at some point.  We didn't travel with him, it was too much of a risk, I had visions of un-scheduled landings and air-marshals escorting us off in the middle of nowhere.  Going out to eat was always hit-or-miss.  He wanted to do it, nothing better than people serving you fries, but it was unbelievably stressful.  Wherever we went they had to be fast, and I had to have every method of counter-tantrum tactics at my disposal: portable DVD player, every DVD, books, treats that he likes a lot but doesn't usually get like certain candy, his water in the appropriate drinking container, you name it.  And even then there were many times we just had to leave because he would start up and we didn't want to disturb everyone else in the restaurant.  It was the day-to-day errands though, that were really the worst for me.  The family needs food, other things, I have to go out, but it was always at the expense of my self-worth as a parent.  The looks you get from other people when your child is acting out or extremely upset are harsh, to say the least.  One of the things that hit me through the course of all this was, he doesn't  look  like there is anything wrong with him.  Autism is like the invisible disability, you don't see it until you interact with an affected child or adult.  On the surface, he looks like a regular kid.  So to others, it just looks like a badly behaved child and a mother with poor parenting skills.  There were certain stores I would go to regularly as we all do.  I would start to get looks from some of the staff in these places like "oh great it's that woman with the screaming kid again".  That's me.  His father would jokingly suggest I wear a t-shirt that had an arrow pointing to Josh saying "he's autistic".   It probably would have helped. 

One of the worst moments - mind you there is a good list of those, but there are certain stand-outs among them - I can tell you about occurred at a grocery store I had been going to regularly.  The staff at this particular store seemed more understanding than most and a number of the cashiers knew about his issues from talking to me.  One afternoon I was there with Josh,  Zach was at a birthday party so it was just the two of us.  Josh started screaming, as usual, and so I tried to hurry up with what I needed to get.  He'd been screaming for a couple of aisle walk downs, and I got to about the third after he'd started and this woman in the aisle approached me and said "you know, you should leave."  I was stunned.  I told her I was sorry, but that Josh was autistic and he couldn't help what he was doing.  Again "I don't care, you really should leave, you are bothering everyone in the store. "  Ouch.  Never in my life had I ever been told or asked to leave anything, anywhere, for any reason, even with Josh.  I could really hardly believe anyone would be so insensitive especially when I had explained it to her.  I always knew it bothered people, I even knew that a lot of them probably felt the same way this woman did.  But that someone would have the nerve to do what she did to this day shocks me.  I teared up and told her I thought she was the most insensitive person I had ever encountered and she came back with "YOU are being insensitive to everyone else here, just leave!"  Wow... just wow.  I started to cry, and walked away.  I did finish my shopping but I have never felt so awful as I did then.  Was she right?  Of course everyone told me I should have followed her around the store just to annoy the hell out of her and that sounds like a great way to come back at someone like that, unless you are the one in that situation.  I was shocked, sad, embarrassed, guilty, angry - it's hard to sort that all out, especially when the little toad was still screaming.

There was one time that stands in contrast to that though, so it deserves to be mentioned.  One summer I had taken the boys to visit my dad who lives on Vancouver Island.  You have to take a ferry to get there, and the ferry part of the trip alone is about an hour and a half long.  The way up had been pretty un-eventful.  The way back, however, was not.  It was an early trip, since we still had to drive for a few hours after getting off the boat to get home.  Zach and I needed breakfast so we went to the cafeteria to get some food.  Josh started screaming.  Can't get off a ferry, and I didn't want to force Zach to go hungry because his brother was acting up.  So, I stuck it out with him in the cafeteria.  I learned to stop paying attention to all the looks so I was just focused on the kids, doing what little I could to try to get Josh out of his funk.  A woman who was seated at a table with some other people not far from us came over.  She asked if there was anything she could do to help me... said she and her family thought maybe they could take Josh out for a walk or something so Zach and I could eat.  I explained the situation and thanked her very much for the offer but had to decline given Josh's issues.  She told me if there was anything they could do to help to let her know.  Probably one of the nicest things anyone I don't know has ever done for me.  So it wasn't always a matter of being judged harshly by others, but this was the one and only time that anyone has ever taken the time to be kind to me about it. 

Over the last few years, the outbursts have decreased in the public setting significantly.  So much so that we did fly to go to Disney a few times, mind you that's DisneyLAND, not World, since it's only a 2 hr 45 min flight vs 5 hrs and we give him a very, very, tiny dose of Valium before flying.  Doesn't knock him out, but it does keep him quite calm for a couple of hours.   Home and school are a different story, but I can take him to the store these days without outbursts, which is wonderful.  We can go out to eat and as long as I have what he needs to keep him happy and it's usually ok, though there are still occasional times when he just can't manage it for whatever reason and we have to leave.  But it's nothing like it was.  I am grateful for this every day.  There are still many challenges to face with him daily, but at least this is not the nightmare it used to be. 

Next time you are out somewhere, anywhere, and there is an unhappy child and a frazzled mother, please don't be too quick to judge - you never know what might really be behind the all the noise.