There’s No Place Like Home

I am fortunate that DC loves to travel. This was not always the case and for a time I believed we would never be able to go anywhere at all, especially by plane. But now he loves to go everywhere and anywhere.

As much as he loves to go away, he always knows when it’s time to go home. If he knows we are leaving on Tuesday, then we are leaving on Tuesday. If he was offered an extra day in Disney, he would not take it because he is going home on Tuesday. It’s not that he is not enjoying himself, he is. He just knows when it’s time to go home and he wants to go home.

Three years ago we took a trip to San Francisco. With the exception of the off season heat wave, the “salad dressing incident” (as it has come to be known by many of my friends), the evacuation of our hotel and an extremely frightening ride in a taxi, the trip went well.

Evacuating the hotel – San Francisco 2010

We had a great time!

Walking on the Golden Gate 2010

Saturday came and it was time to go home. We had a very late flight, so we spent the day seeing some last minute sights, dinner, and nap and off to the airport to catch our 12:30 am flight home.

Everything went smoothly; bags were checked in, we got through security quickly, we made it to the gate, got DC some snacks for the flight and waited to board.

It was about the time for the plane to begin boarding when the announcement came that the flight had been cancelled! Not delayed, cancelled, due to the crew’s “fatigue” ~ seriously that is exactly what they announced; the crew was fatigued and the flight was cancelled. The next flight out was not until 6:00 am the following morning. This was an already scheduled and sold flight, so chances were they would not be able to accommodate all of these people that just became stranded in the airport.

This was not going to be pretty; DC was ready to go home.

The conversation went like this:

DC the plane is not coming; we have to wait until tomorrow.

“Going home now”

“There’s no place like home”

No, Bud we have to wait until tomorrow, the plane is broken (I wasn’t going to try to explain “fatigued). Okay, we will go home tomorrow.

“Okay”

Pause……….

“Plane is cancelled, going home now. There’s no place like home”

Mom, going home now. No place like home. Plane is canceled, going home now, there’s no place like home.”

I tried to explain again and again, but as many times as he said “Okay” he went right back into “Going home now, there’s no place like home, plane is cancelled, going home now”

I gave up explaining and tried to ignore it, but he got right in my face and started to get loud “Going home now, there’s no place like home, plane is cancelled, going home now”

The gate was a zoo, with all of the passengers trying to book other flights home. I sat with DC while Doug was in line trying to get us on a flight. There was nothing else I could do for him. He wouldn’t take any explanation I could give him. It just wasn’t going to sink in.

Now I was also worrying about spending the night in the airport with him. I didn’t think it was going to be easy to get a room anywhere since the entire flight of people would be trying to get a room. We had already turned in the rental car and I was imagining us driving around all night in a cab looking for a hotel with an open room. Our bags were checked in earlier and we wouldn’t be getting those back tonight so we had nothing!

And DC was still going on and on……

At this point I saw that Doug had made it to the counter and was working to book a flight. DC was just going on and on so I decided I would share the “joy”. I took DC up to the counter and stood next to Doug.

DC went on and on…..

“Going home today, there’s no place like home, plane is cancelled. Mom! Going home today, there’s no place like home, plane is cancelled, going home today” louder and louder……..

The woman behind the counter looked up at me and said “Oh! I AM Soooooo SORRY!” as DC kept reciting his lines. He kept it up, I tried to explain over and over and he went right on. She apologized again and on he went.

She was finally able to book us a flight for the next day. And she also threw in a room free of charge (She may have been afraid she would have to listen to this the entire night – I think that “Sharing the Joy” may have paid off a bit……..)

And yes, in this case I agreed with DC… there is no place like home!

Wax Museum – San Francisco 2010

(We’re going to skip over the next battle in the room, with no luggage, when he refused to go to sleep because he had no PJ’s and one just doesn’t sleep In one’s clothes, you know)

“How Rude!”

Posted by TakingItAStepAtATime

Full House…. One of DC’s favorite TV shows. He especially enjoys Stephanie’s classic line; “How Rude!” It must be the delivery because DC really doesn’t have any notion of “rude” or what it means. He says what he says, the way it makes sense to him. He has no concept of what rudeness is.

Years ago, in the grocery store he wanted to get past someone, he just said, “Move”. I explained to him that this was rude and that he should say “excuse me”. And he did……. to every single person we passed in the store, every single one of them. He now knows not to tell anyone to “move” because I told him not to. He doesn’t understand why and just knows that it’s rude, not really knowing what “rude” means and not really being able to relate it to other things he does that can be seen as rude. It’s rude because Mom said so, period.

A few years ago, we were in Las Vegas. We were walking down the street and I was holding DC’s arm trying to navigate him through the hordes of people made worse by construction, on the sidewalks. He also has no awareness of what’s around him, in the sense for example, he will stand up in a restaurant to put his coat without looking around to see if he’s going to hit a waitress or a customer with his arms. He just doesn’t have the thought process to consider who might be around, who might be in the way, who he might knock over. He just does what he has to do. I was so preoccupied with making sure he wasn’t in anyone’s way, bumping into them or hitting anyone when the arms started flapping, that I didn’t notice the people out on the sidewalks handing out their “marketing materials”. I looked down and DC had a handful of business cards, all with photos of women on them. He wasn’t looking at them, he was taking them because they were handing them to him, and we always do what we are told. I took them and tossed them in the trash. I couldn’t just tell him not to take them. He wouldn’t know what to do when the next person tried to give him something, and that would result in a bit of a breakdown. Mom said not to, but they are still giving these to me. That sort of conflict in this head is never pretty. So I told him that if anyone else tries to hand him anything else, that he should be polite and just say “No, Thank you” and not take it.

In Vegas, the people handing out “literature” stand about 7 or 8 in a row and you run into another 7 or 8 of them every 10 feet. So DC, following the rules, proceeded to walk down the street, screaming “NO THANK YOU!” at each and every one of them, all the way down the street, the entire time we were there, anywhere we went.

That’s my boy! He IS NOT rude 🙂 I did manage to get him to lower his voice a bit as the days went on and he was very proud of himself for being so polite – even though he really doesn’t understand what that means either. It’s all still a work in progress………………….

“Look in the mirror and spit cookies”

Posted by TakingItAStepAtATime

“Look in the Mirror and Spit Cookies”

One of my greatest fears (one of them; I have a million) is DC having something medically wrong with him and I won’t be able to tell.

Unless he has a fever, throws up or passes out right in front of me (try catching a 200lb boy at 3am) there is really no way for me to know. He doesn’t really let on that there is a problem and when there is, his behavior is pretty much the same as it always is. I don’t know if he doesn’t feel pain like the rest of us or he just doesn’t process it the way we would expect. This boy can run full speed with a sprained ankle!

When he was younger, he would “tell” everyone that he was sick; actually he would just sign “sick” with no other details. Most of the time he was not sick at all, but he knew the school nurse had jellybeans in her office so that is where he wanted to be! Then he discovered when he was finished with the jellybeans that they would call Mom to pick him up. Most of the time, knowing that he really wasn’t sick, I would pick him up and bring him to work with me – which he loves, so I wasn’t really winning any battles there, but I had to work. (We’ll forget about the ONE time, he threw up all over my office, the ONE time he really was sick and no one believed him. I guess he showed us!)

On the few occasions that I did suspect that something might be wrong, I had to resort to asking him questions that I hoped he would respond with a “No”. The more ridiculous the question, the better. Because he answers “yes” to everything, I can’t lead him to an answer by asking;

“Does your head hurt?”

“Yes”

“Does your stomach hurt?”

“Yes”

If I ask him more than once, all of his answers then become “no” because he thinks he’s giving me the wrong answer.

So I have to ask “Do your eyebrows hurt?” or “Does your hair hurt?” By asking him this sort of question, he thinks it’s funny, gives me a “no” and then he understands the question and sometimes even tells me what hurts.

Because I had to do something about his daily jelly bean pilgrimage to the nurse’s office, I stopped taking him to work when they called. If he was so sick that I had to pick him up, he had to go home and rest. That ended that game, but now he won’t tell me anything at all because he’s afraid he’ll have to rest or worse…. go to the Doctor!

There was one time when he did tell me…..

Well, sort of…

One night he ran by me on his way upstairs. I asked him what was wrong and where he was going.

“Look in the mirror and spit cookies” and he ran upstairs.

After a very confused few seconds, I realized that a few months back I went upstairs and found a disgusting mess in the bathroom sink. It was apparent that DC was sick (evidence! YES!) But instead of telling me he just went to “listen to the music” in his room.

I realized that “ looking in the mirror and spitting cookies” was his way of telling me he was going to be sick, because that last time, he was in front of the sink, in front of the mirror and he had eaten cookies!

I was right and yes, this is the way my mind has to work to be able to figure anything out.

I’ve told him so many times that it is very important for him to tell me when something hurts. Mom might have medicine to make it better; it doesn’t always mean a trip to the doctor. We have this discussion at least once a week. I didn’t think I was getting anywhere.

The other morning I heard, “come here please”. I went upstairs and said “What’s wrong, DC?”

“I need your help”

What do you need me to help you with?

“Nothing, I love you” (I didn’t find it all that odd because he calls me upstairs quite often to tell me he loves me or to tell me what he wants for breakfast the next day).

I went back downstairs. He came down looking a little out of sorts. I asked him again what was wrong.

He proceeded to tell me, not in the words you or I would use, but he told me! Luckily I had medicine to fix it! He was okay in about 20 minutes.

So I’m hoping that he’s realized that he can tell me and sometimes I can fix it and it doesn’t always mean resting or going to the doctor. I’m also hoping this means if something is bothering him enough, he will say something, which is a little bit of a load off my mind.

Just one small step in the right direction……..

Communication, Paper Towels and Other Nonsense

Posted by TakingItAStepAtATime

The battle for communication from the time DC was in the Birth to 3 Program has been a never-ending battle fought, for the most part, uphill.

When he was younger I asked – begged, someone – anyone; his teacher, his IA, anyone, to write at least one thing that he did that day that was specific to that day. I explained that I wanted him to understand the question “What did you do today” and to be able to have some sort of conversation whether it be in sign language (when he was young) or in just a few words (when he moved past sign and started using a small words). I just wanted him to understand the question and give me some sort of response.

If I couldn’t get a response, at least I could list a few things I KNEW that he did, hoping that this would get the point of “today” in his mind. If I listed things that I thought he may have done and he answered “yes” and then turned out he didn’t do those things, we were missing the point of learning to respond to “what did you do today”. He will give random answers, or answers that he gave before, even if they are not correct. So I needed to KNOW.

“Fine Day overall” – my all-time favorite, was not what I had in mind.

Now he’s in a day/work program. It took a long time to find this program (which was the blog I was going to write today). He works in their on-site Greenhouse which is open to the public. Communication is a little better about what he did that day, but other notes can be a little odd at times.

Judging from some of the notes I’ve received I really don’t think they understand him or the way his mind works.

“DC refused to do a job that was assigned to him today”.

Now…… I am not one of those “Not MY Child” or “My child would never do that”, I know what he would or wouldn’t do and my child would not do that! Upon further investigation I discovered that they were phrasing their assignment, for example; “DC do you want to empty the garbage?” Of course he is going to say “No”! Who wants to empty the garbage if given a choice? Phrasing it as a question is giving him a choice in his mind. He’s not refusing, he’s answering a question.

I’m not going to get into all of the notes, but it’s clear to me that they don’t understand Autism, which I find odd in a program for special needs adults.

Note from yesterday:

“DC, when given some directions – a job I guess he did not want to do, banged his hand on the water barrel.”

That’s it.

It’s difficult enough to talk to him about something after the fact, never mind without specifics.

What was the Job? Were there too many directions?

He can follow directions but it has to be a step or two at a time, otherwise he overloads, shuts down and won’t hear any of it. Something they should know at this point.

And then:

“DC has been using up paper towels at work. I told him it’s a rule – One Towel only when you wash your hands. I made a sign that says “Rule – One Towel” for him. If you have a suggestion, let me know”

(This about a kid who more times than not dries his hands on his pants)

I went to have lunch with DC hoping to speak with her, but she was not there.

After lunch DC had to use the rest room and I waited (1/4 of my life is spent waiting outside the Men’s Room :). He came out, went to the sink, washed his hands, took one paper towel and threw it away.

And then there was this:

DC Rule
1 Towel

They posted his NAME on the sign in a place of business that is open to the public!

As I was leaving, the assistant said “DC do you want to work in the garden with the boys?” – and DC said “no”……….. – (heavy sigh)

And how was your day?

****

The sign with his name on it and the question (again) instead of a directive were both addressed …. but we won’t get into that. The sign was taken up with the director later that day.

****

Tales from the Day Program – ALL

“Funny Friday”

Posted by TakingItAStepAtATime

“Monster”

For the two years after “Graduation” DC attended a transition program through the school system at a local college.

I was visiting the school for a class event, one Friday afternoon and his teacher, “Mr. Disney” (as DC calls him) excitedly came over to me and asked “Did you help him with his jokes today?” Not knowing what he was talking about, I said “No, what jokes?” One of the IA’s (“Para’s” to some of you) chimed in to tell me that he had told 3 jokes for “Funny Friday” that morning.

Mr. Disney went on to tell me that every Friday is “Funny Friday” and all of the students tell their favorite jokes at the morning meeting.

Okay…. Let’s pause here for a moment……

I don’t know how long (or if ever) it will take before anyone will understand that HE IS NOT GOING TO COME HOME AND TELL ME THESE THINGS! If someone else does not tell me, I am not going to know. If I had known about “Funny Friday” I would have helped him with some jokes, but unfortunately I was never told.

I was surprised that he actually TOLD a joke because DC’s idea of a joke – and it’s always the same – is:

“Ha, Ha, Ha! Funny Joke!”

Me: “What’s the joke, Bud?”

“Monster!”

(Insert “cricket” sound here – that is it)

They proceeded to tell me the jokes he told that morning. He told them properly complete with a bow and…. they were actually funny – real jokes!

“Why did Bo Peep pour chocolate on her sheep?”

“She wanted a chocolate BAAAAAAAAR”

“Why can’t Cinderella play Soccer?”

“Because she ran away from the ball”

“What do they call a Fairy that doesn’t take a bath for a month?”

“Stinker-Bell”

He told honest – to – goodness JOKES! After years of “Monster”, he actually told, not one joke, but three and UNDERSTOOD why they were funny!

Later, I ran into the Interim Dean of Health Sciences, of the college who couldn’t wait to tell me about the three jokes that DC shared that morning. Everyone was very impressed, to say the least!

Still I had no idea where he found these jokes.

About a week later, “Mr. Disney” finally got DC to tell him where he found his material.

Actually, he showed him……

After asking him all week, DC went to the computer, typed “Disney jokes” in the search engine and found a web-site full of Disney jokes.

He memorized them and had them ready for “Funny Friday”!

He was able to figure out on his own that “Monster” wasn’t cutting it for “Funny Friday” and he needed better jokes. He went about finding them himself, remembered them and had them ready for Friday!

“Monster” ?? Still his favorite joke.

(Graduation – I do not know what it is like everywhere else, but here school-age for SPED is 3 to 21 years old. DC “graduated” from the High School after spending 4 years there. Having two years left of school, after his senior year – the options were to let him stay at the High School or to have him outplaced into an appropriate transition program. Fortunately the town put together this transition program right before DC was ready to graduate.)

“This is mine” –just one more thing to file under “Things I should know by now”

Posted by TakingItAStepAtATime

“This is Mine”

Last week DC and I went out for frozen yogurt. Normally DC gets the “Bucket Size” with as many toppings as he can fit, hot fudge and whipped cream. I usually get the smaller size, no toppings and I throw mine on the scale quickly to see how much it weighs so I can track my points. I have to admit that most of the flavors all taste the same to me, but a treat is a treat especially if it works with point-tracking.

Earlier that day, I had French fries with lunch so I decided that my day was already blown – I might as well just go all out (yes, I can throw in the towel that easily – don’t judge).

DC likes his toppings but doesn’t understand that he can’t just keep heaping them on – they end up all over the counter. I taught him to put some on the bottom before he gets his yogurt, so that is what he does now. I took my own advice and put a layer of Butterfinger crumbs on the bottom of my “ bucket” before picking out my yogurt flavor. We paid for our yogurt, complete with toppings, fudge and whipped cream and took a seat.

Half way through DC announced “This is mine”.

Okay….??….???

I didn’t know what that was all about but I said “Yes, Bud, that is yours”.

He announced again, “This is mine!”

Now I’m thinking that he was worried that I wanted some of his. (You know the commercial for macaroni and cheese “skimming”? That’s me! Guilty! He usually never comments on my skimming, so I was a little surprised that he was so adamant about the yogurt being “his”).

“Don’t worry, Mom has her own, yes, that is yours”.

We continued to eat our yogurt and when DC made it to the bottom of “his”, he showed me his spoon covered with MY BUTTERFINGER Crumbs and said “I don’t like this” (seriously, WHO doesn’t love Butterfinger crumbs!)

We had mixed up our yogurt buckets and he knew it. He was trying to tell me that the whole time. Now I know he confuses the words – I, me, you, yours and mine but he was so adamant about telling me it was “his” and because of my assumption that the “skimming” was beginning to bother him I just didn’t realize he was just reversing his words as usual!

So the lesson for that day was;

If I listened to what he was really trying to say, I would have gotten to have my Butterfinger crumbs!

And again, who doesn’t love butterfingers????!!!!!!

Just another item to file under “things I should know by now”

Sometimes “I told you so” is just good for the soul

Posted by TakingItAStepAtATime

DC in Uniform – Challengers Baseball

DC played baseball with the *Challengers League from the time he was 5 until he aged out last year at 21.

The “official” Challengers field in town is located in front of the school he attended for Birth to 3, Early Intervention and Kindergarten. Needless to say he was in this building and with many of the same teachers for a good 4 or 5 years.

I’ve had my battles with the school system over the years, but none so on-going as the need for speech therapy. This battle began in Early Intervention and continued on straight into High School.

Sign Language, I believed was absolutely necessary, thanks to my sister in-law, Lisa who convinced me that sign would not prevent him from speaking if he had the capability to eventually speak. It might lessen his frustration level at not being able to communicate (it did). But sign was not, in my mind ‘Speech Therapy” and should not be considered as part of the Speech Therapy hours listed in his IEP. Speech Therapy in a group setting also should not be counted as his speech therapy. Yes, he did need to learn to be able to focus in a group setting, but focusing in a group setting is not speech therapy, it is learning to focus in a group setting.

I can’t tell you how many of these teachers told me he would never speak. One speech therapist, Barbara, actually told me that I was obsessed with DC speaking and “You know, if he isn’t talking by now, he probably isn’t going to”. He was 5 at the time.

They went so far as to schedule and pay for an evaluation at a well known Medical Center to have him evaluated for a **“Talking Board”. I went to this evaluation, never intending for him to use a Talking Board, but to use the evaluation as proof he was capable of speech. As it turns out, this is exactly what the Doctor doing the evaluating said; he did not recommend the Talking Board and noted this in his report.

I didn’t give up on my battle with the school system, but I also didn’t want to waste any more time getting him the speech therapy he needed, I went out and got other speech evaluations and hired a private speech therapist. Liza was wonderful and made a great deal of progress with him. She was with him for many years. Armed with the evaluations and his progress, I was finally able to prove this to school system – Quite the Catch 22, he had to speak before they would agree to one on one speech therapy! Unfortunately it took a few years to get to this point with them; years that would have been wasted if he were not receiving the private speech therapy.

But back to baseball…….

Our league used a PA system and we always had a volunteer to announce the games. Each game was opened with the Pledge of Allegiance.

When I was President of the league, I decided that every player should have a chance to be in the spotlight. Each week two players were assigned as team captains and another player was assigned to do whatever they were capable of doing on the microphone.

Some led the pledge; some sang a patriotic song or just yelled “Play Ball!” If they were not verbal, they stood at attention at the Flag or threw out the first pitch.

Our games were played on Saturday mornings and Wednesday evenings. DC was about 10 years old and on this particular Wednesday when he was scheduled to be in the spotlight. Coincidently all of the teachers from the Early Intervention Program had been attending a meeting at the school after hours and decided to come down to watch the game before heading home. Most of the players had been their students at one time or another.

Many of them had not seen DC in about 4 years. Just imagine the feeling I had to see DC to go to the mic and sing “America the Beautiful” as clear as a bell with all of those “professionals” who years earlier told me he would never speak, sitting right there in the stands! I could not have PLANNED this if I tried!

Sometimes an “I told you so” is just good for the soul, even if you don’t have to

actually say it out loud.

*Challengers Baseball is a division of Little League for children with physical and intellectual disabilities

**”Talking Board” I don’t know what they might be called these days, but that is what they were called back in the 90’s.

A VERSION OF THIS POST WAS PUBLISHED ON THE MIGHTY – “They Told Me He’d Never Speak. Then They Heard Him Sing”

“Maybe” is not a word

Posted by TakingItAStepAtATime

I don’t think there’s any more that needs to be said here…..

“Happy?” – “Sorry” – What’s next?

Posted by TakingItAStepAtATime

Yes, John Lithgow is “Happy”

Years ago, DC and I were out doing errands. We had to have stopped at 3 or 4 different stores, which at the time was very difficult for him. By the time we got to the Health Food store, he was so out of control that the cashier saw fit to stop the line to try to educate me about just what vitamins, etc. I should be giving him to combat his ADD – (Holding up a line of customers to give me advice in front of all those customers, was just what I needed). I informed him that my son had autism, not ADD, but thank you very much!

On the way out, I said “I am not very happy today”. That one single comment led to years of DC asking everyone if they were happy. He did not have many “words” under his belt at the time, but he did manage to ask everyone he met if they were “Happy?” (Can you say “guilt”?)

* We have an autograph on a golf card from John Lithgow making it clear to DC, that yes, he is “happy” (see photo).

Eventually he stopped asking people if they were happy and the “Happy” question was replaced with “sorry”. I am sure this is my fault as well. Somewhere along the line I must have told him to say he was sorry for something and there it began.

He is sorry for absolutely everything! Partially because he believes an “I’m sorry” will get him out of anything. (**warning; slight “man-bash” ahead). Like a typical man, he thinks that saying “I’m sorry” even when he doesn’t know what he is sorry about will get him out of anything or at least get me to stop talking. When he really wants to bring it home he will move on to: “I’m ‘ter-bly’ sorry” or “I am soooooo sorry”. He will even throw in a “Can you ever forgive me?” (movie line) when he really thinks it is necessary.

He says he is sorry, WHILE he’s doing something he shouldn’t, and will continue right on doing whatever it is because he is covered, he already said he was sorry. Or he will say he is sorry when he is about to do something he knows he shouldn’t. He is covered- he already said he was sorry!

He says he is sorry when he asks a question and the answer happens to be “no”. In his mind, “no” is a negative even when it is just an answer to a question. I have tried to explain all of this to him but as much as I try to simplify there are just some things he will never understand.

Don’t get the wrong impression; he is not upset or anxious when he says he is sorry. It is just a word to him. He does not constantly think he’s in trouble. It is just something for him to say….. over and over again.

A few days ago he somehow figured out from one of his books that the word “Sympathy” in a way means “sorry”. So on that day, DC was “in sympathy” for sneaking chips.

I think I might like that better.

“Describe Your Child in 200 Words or Less” (From Archives – June 14, 2013)

Posted by TakingItAStepAtATime

“Describe Your Child in 200 Words or Less”

I’m sitting here once again trying to fill out a form to describe my son, one of the hundreds of forms I’ve had to fill out over the last 22 years. It doesn’t get easier. This particular form is for the Police and Fire Department for a program that keeps information on file about the special needs children in town so if they wander, become lost or if some emergency happens in the home, the police and fire departments have pertinent information on our children, their disability, how to manage the situation, what makes them anxious, what calms them down, where they might go, etc.

It’s a very necessary program and we are thankful to have it, but how do you explain autism to someone that knows nothing about it or knows only what they’ve seen on TV, movies, or read in a few articles?

How do I explain my son without writing pages and pages of examples and still not be able to make it clear for anyone?

He was taught never to open the door, so he is NOT opening the door, for ANYONE, even to the police. He will stand behind the door and yell “Don’t open the door” but he’s not going to open it. I can’t teach him not to open the door to anyone, except for the police or fire department. There is no “except for”, no grey areas, it’s one way or the other.

How do I explain how to ask him a question, knowing that most times he will not understand the question and if you ask him more than once he will just resort to “I don’t know” or “Nothing’s wrong”.

This doesn’t mean he doesn’t have something to say, it only means he doesn’t know how to get the answer out and he’s afraid he’s giving the wrong answer so he’ll change it if you ask him more than once, BUT you also HAVE to ask him more than once to be sure he’s not giving you a random answer so you’ll stop asking. You also have to be careful not to ask in a way that might lead him to the wrong answer and even then you don’t always know if you are getting the correct information.

How do I explain that he gets “me” and “you” mixed up, “mine” and yours”, “do” and “don’t” – but only some of the time? How will anyone else be able to determine if he’s getting it right or if he has it reversed?

Most forms that I’ve had to fill out over the years ask if he is “Verbal” or “Non-Verbal” – there is no cut and dry answer to that question. “Verbal”, to a person that doesn’t have much exposure to Autism, will assume that it means he can communicate. Verbal and Communication can be two VERY different things. Yes, he is verbal, but for the most part it is to communicate what he wants or needs, if he’s proud about something, or to recite random and often obscure Disney or movie lines; he really can’t communicate when there is something wrong and/or what is wrong, if he’s sick, or if something hurts. Answering that question so it makes any sense at all is always an issue.

Add all of that to the fact that everyone is different; there are no “engraved in stone” symptoms that everyone with Autism shares – they can be as different as night and day.

I don’t know what the answer is, I don’t know how we can make others aware of the many differences in our children without giving them pages and pages of information (that most won’t make it all the way through) and still it will not give the full scope of what they are all about… individually. There is such a wide spectrum between “Rain Man” and the “Max Braverman’s” of the world. I still don’t know, after 22 years of trying, how to explain it at all and worse, how to explain it on paper.