Pants on Fire

We have heard a lot about RESPECT, AWARENESS and UNDERSTANDING over the past few weeks (End the r-word) and we will hear quite a bit more next month during Autism Awareness Month.

There are times when, we, as parents of children or adults with special needs, do have to go to extremes or try many different tactics to get information from our children. Communication is not easy with my son. He can/will tell me what he wants but anything else is difficult. An answer to a simple question, if I can get an answer at all, can take a good long time and a lot of work.

But….We do not “trick” and we do not lie.

Having said that, when I drop DC off at an activity or event, I do have to tell him verbally and in sign that I am going for ‘coffee’. For some reason, and I really have not been able to figure out why, he knows this means and I am coming back to pick him up. I consider this a “little white lie” , not a big deal. 90% of the time, coffee will be involved in whatever I am doing or wherever I am going.
If I tell him I am going home, or to the store, my departure is prolonged by :
“Mom is coming back?”
Yes, DC.
“Mom is never coming back”
Of course I am coming back, DC.
As I start to walk out of the door, he moves on to – “Mom, come here please”
…………………….and the whole process begins again.
For some reason he accepts ‘going to get coffee’ and it is all good.
For the record, in case anyone thinks he’s been traumatized at some point by being left somewhere……. I have never forgotten to pick him up, I have never even been late to pick him up from anything at anytime, so I really don’t know where this comes from, but ‘coffee’ seems to be okay with him. Why I have to use the ‘coffee’ sign is just another mystery.
This sort of thing, which actually makes him feel better, and is not hurting him or anyone else, is fine with me. I don’t really consider it a lie and it is certainly not a trick.

A few weeks ago, a friend and I were having lunch in a restaurant that is staffed by special needs adults. They do, of course have supervisors, but the wait staff and kitchen staff are all adults with various special needs.
This particular day, my friend and I were sitting at the farthest corner of the restaurant.
I am a “people watcher” by nature, but if the following exchange could be heard in detail by us, sitting so far away, it was without a doubt, heard by the customers sitting closer to the front.

I noticed a staff member approach the restaurant supervisor, who had been eating at her desk since we arrived, with some sort of candy/food wrapper. I really didn’t hear what the first staff member said to the supervisor, but the supervisor replied, “I don’t know who was just in the bathroom”. So again, being a parent of a special needs child and having quite a few friends with special needs children, I surmised from this (loud) statement that someone was sneaking food in the bathroom.
I get this, I get how this could be a concern. Did it have to be announced? No, but I do get it.
I continued to watch because, still eating with one hand, she picked up the wrapper in a scissor hold (between her index and middle finger), lifted it up into the air over her head and turned it side to side as if she was looking for finger prints or something. The production she was making was kind of funny and way over the top. It was without a doubt entertaining, anyway. I assumed that was the end of it, but what followed was not funny or entertaining at all.

She put her food down, got up from her desk and went over to the counter that looks into the kitchen area. She raised this wrapper over her head (still in the scissor hold) and asked, “Who left this wrapper out here” (Not “Who left this wrapper in the bathroom”).
I could hear a few employees answer, “Not Me”, “It wasn’t me”.
She then said, “I just wanted to know where I can get these”. Her assistant joined in by saying “They look so good, they have raisins and ___, (I couldn’t hear the other ingredient she mentioned) we just want to know where we can get them”.

At this point I could hear someone reply. I could not hear what they said, but someone did reply.
The supervisor then asked “Did you buy them yourself or did your mother buy them for you?”
I heard the employee reply that her mother bought them.

As they walked away from the counter, proud of themselves for tricking the employee into confessing by taking full advantage of her disability, the Assistant said, “I knew it was her” – the Supervisor replied, “Of course it was, she didn’t say a word when I asked who left it”.

Again – far side of the restaurant – we heard all of it.

RESPECT, UNDERSTANDING, AWARENESS, TRUST and let us add CONFIDENTIALITY???? What do we do when the people entrusted to care for and work with our children do not seem to know the meaning of any of those words?

Apparently, we still have so much more work to do.

(Just as an FYI, Normally I would have said something to her, her supervisor or both right away, but I was 95% sure that the person they were tricking into confessing was the son of a friend of mine. I wanted to tell my friend the story before giving the manager a heads-up and a chance to come up with a different version.)

****

Tales from the Day Program – ALL

The things we know…. and the things we don’t

Posted by TakingItAStepAtATime

Just 5 minutes inside his head.

My friend Peg and I have often discussed just how fantastic it would be if we could just get inside our kids’ head for five minutes! That is all we wanted, 5 minutes…. 5 minutes just to see what is really going on in there.

We never really know, we may think we do, but we really, really don’t.

As much as I think I know my son like the back of my hand, there are still times when I realize I do not know anything at all.

For example, during his 3rd year of swimming with Special Olympics, his coach yelled over to me one day at practice “He just figured out he can open his eyes with the goggles on!” – At that point in time, he’d been wearing the goggles for practice twice a week and during competitions for as I said, 3 years. It never occurred to me or anyone else for that matter that he didn’t know he could open his eyes while wearing them. I suppose, that knowing him as I think I do, it should have, but – no, it did not.

I am relatively sure he does not understand “death”. Other than Bambi’s mother and Old Yeller (who was quickly replaced at the end), none of his favorite Disney characters ever die, really. If they do – it doesn’t last. Someone kisses them, or a spell is cast and there they are, good as new. I try to talk to him about death, due to my “dropping dead” obsession and because everyone dies eventually. I never want him to think I just left him, but I really can not say that he understands it at all.

DC seems to live in the present. Things change and he just changes with them. I had a conversation with my friend, Toni a while back. Her daughter can watch something like Full House and relate it to her own life – high school, college, get a job, buy a car, get married, and have children. DC watches but does not relate any of this to his own life. He went to high school because I sent him. He moved on to “college” because I sent him and so on. I tell him what to do and he does it. I have tried to have conversations with him about what he thinks should come next in his life, but these conversations just tend to go to “dinner” or whatever meal or activity may be coming up. His future is not a concept he can grasp. He lives in the present and doesn’t seem to think about anything changing in his life, things just change and he just goes with it.

So the other night DC was on a ‘picture drawing’ roll – Flowers for Mom, Hearts for Mom, Birthday Cake for Mom and then this…..

Wedding Cake ? For Mom?

Needless to say I was a little bit thrown. DC’s Dad and I divorced when DC was 3. At the time, I didn’t try to explain it to him, I was too busy trying to get him diagnosed. It didn’t seem to faze him, he still saw his Dad every week and I was sure he would not understand any attempt I could make at explaining it to him. He never seemed to think anything of it. As marriage is something I never had or have any desire to do again, it is not something we ever talked about. Other than adding “Baby for Mom” to his Christmas list a few years ago, I never really had any indication that he might realize that things may be different here than at his friends’ homes. I am still not sure that he does. It has always been this way – it is what he is used to.
Most of his friends do have parents that are together and they also have brothers and sisters. But I still do not think he relates that to his own life. But again, every time I think I have him figured out he does something like presenting me with a drawing of a three layer wedding cake specifically for “Mom” and he has me guessing all over again.

That five minutes in his head, would come in very handy right now, but since I can’t have that, I am going to assume that he just really loves Wedding Cake and he just wants to share with his Mom………….

Literally Speaking

Posted by TakingItAStepAtATime

Raining Cats and Dogs

Twelve years ago, I wrote this:

“You can NEVER be too specific:

While learning “grocery shopping” in the classroom; his plastic cart full of plastic food… he was told that it was time to “put everything on the counter to pay” – Instead of taking the food out of the cart, he lifted the entire cart onto the counter!”

And

“When you tell your child to pull his sweat pants down over his socks and he proceeds to PULL HIS PANTS DOWN from the waist to his ankles – You know you were not specific enough with your request.”

And a few years later, this:

My son loves to write little “stories” (he thinks they are stories, but they are usually just one line).

I had been home from work for a few days with the “Flu”. It really didn’t occur to me that he had no idea what the “Flu” was and I wondered why he would laugh each time I mentioned it. He decided he would write one of his one-line “stories” for me to make me feel better ……

“Mom was so high”

It took me a few minutes…… but then I realized he thought I “Flew”

Then there was the time I said “Now listen closely” and he stuck his face one inch from mine…..
He laughed for about a week after I told him it was time to “hit the road”.
Or.. after the third round of kids whacked the piñata at his camp Halloween party, the Director said “Okay, DC, lets’ see you to tear it up” – he yanked it down and ripped it apart with his hands.

Tear it up

There are so many other examples, but these few really stick in my head.

Needless to say, like many people with autism, DC takes everything literally. Over the years, I have gotten much better at recognizing when something is said or read that taken literally will not make much sense to him. I always try to stop and explain what it means in that context, whether he asks or not.

He has made a great deal of progress in that area as well. He knows that the “flu” does not mean “flying”. He gets that “hit the road” means we have to get going. But he knows these things because they were explained to him, he is not able just figure it out himself – how could he?

Knowing this about my son, I suppose, when I told him to “walk slowly” on the sidewalk just in case there was ice (there wasn’t), I should have expected this:

Dear Abby – Feeling Chastised in New England

Posted by TakingItAStepAtATime

Let me just begin by saying that since I began writing this blog I have had the pleasure of meeting a few Autistic Adults. They are amazing individuals that do a great deal to raise awareness about autism. I “speak” with one in particular often enough to consider him a friend. He is a wonderful human being and it makes my day to “talk” with him or just read his posts. He is truly an inspiration to parents of children with autism, other teens and adults with autism. But above all that, he is a glowing example of the good things that can be found in today’s young adults in general. I don’t think of him as having autism, I think of him as my friend, plain and simple. I’m honored to have him as my friend.

My son’s autism or level of autism is not like my new friends’. Autism affects each person differently. Therefore, parents should not be made to feel inferior or chastised for their own beliefs. Everyone is different, everyone. There is no right or wrong, when it comes to autism, just a lot of people arguing with each other, it seems.

Today I received this private message on my face book page from a friend of mine who is pretty much in the same boat as I am “level-wise”.

The fact that she did not feel comfortable posting it publicly, speaks volumes about the environment we find ourselves in with the hostility that she (and I) knew would have ensued had she posted it publicly.

(The following message is used with permission. The names have been changed to protect the innocent)

Dear Abby (Vickie)…I think I’m missing something. Why is it wrong to feel like I’ve lost something in having an Autistic son? Why are we supposed to not want a “cure” or something that helps them handle this world we live in a little better? I look at the video of Bob from birth to 18 months and there were signs, but he was still there. It was June of 1996 – he was 18 months old – all of a sudden he disappeared. He is lost to me. He will never have a normal life. He will constantly need care and supervision. There are many people that are on the much higher functioning side of the spectrum that can navigate the world today. Bob is not one of them. Why am I supposed to not want that to be different? People say you don’t miss what you never had – but I know what could have been. I know what life he could have had and now for sure will not. He will find happiness somehow; he will be as productive as his disability allows him to be. But the sky is not the limit for him. The opportunities for him are not the same as they are for my daughters. Why am I supposed to celebrate that? With all this hullaballoo about celebrating autism over the last few months, I’ve been feeling like a minority. I think these kids are lost – lost to the life that could have been, lost to the possibilities that would have been. I feel they have a disability because they are “not able” to process and handle what happens in life the way others do. Why are we getting lost on the rhetoric? Am I missing something Vickie?

Feeling Chastised in New England

I have said this many times and in many different ways:

I celebrate my son as an individual
I celebrate my son because he is my son and I love him more than words could say.
I celebrate his accomplishments, no matter how large or small they may be.
I celebrate him because he is wonderful.
I do not celebrate the part of his autism that will keep him from being safe and out of danger.

I write stories about my son because:

He is wonderful.
I’m very proud of him.
I’m very proud of his progress.
He makes me laugh every day.
He makes me smile every day.
He makes me worry every day.
I believe these stories shed a little bit of light on autism and the way his mind works – not all autism, but his.

I don’t believe anyone should be made to feel “less than”. I don’t consider my son “less than” but there is an issue. There is that life he could have had. Maybe it would not have been a better life, maybe it would have been, but at the very least he would have been able to understand it and navigate through it.

Individuals should be celebrated, not the diagnosis.

Like “Feeling Chastised”, my son will never be able to live on his own. He will never be able to take care of himself. He will not know when/if he’s being taken advantage of. He does not understand danger or safety. He is verbal but really not able to communicate if something might be wrong.

My suspicion is that many of these parents in celebration have younger children or children that can function at a higher level than mine. They still have hope of great progress, and they should have hope, there is always hope. I still have hope for more progress, but living in the real world I know that even though he continues to make progress, none of the issues listed above will improve enough that I will not spend every day and night worrying about what will happen to him when I am gone. This is the stuff our nightmares are made of. What’s going to happen to them when we’re all done celebrating autism? Our “kids” are going to outlive us, people. Who’s going to take care of them? Will they be cared for in the same fashion that we have cared for them? How drastically will their life change then? Think about it.

If I haven’t said it a hundred times, then let this be the hundredth; if I were to live forever, I would not change a thing about my son. He’s happy almost all of the time. He loves his life. He is in his own little happy world, but he won’t always be able to live in his own world, he will someday have to live in the real world. Then what?

When your child with Autism becomes an adult with Autism and your own mortality begins to slap you in the face, come back and talk to me then about this celebration we are supposed to be having.

Those of us with adult children that will not be able to live or navigate the world with out constant support, that have been in the trenches for many years, long before there was a “spectrum”, long before there were many of the services available today, deserve a little bit of respect and deserve to be able to voice our opinions as you are allowed to voice yours; to want something more than a celebration.

I believe in raising awareness. I believe in trying to make people understand Autism. I believe that INDIVIDUALS and accomplishments should be celebrated. I also believe some of us need more than that.

My only wish is to be able to die in peace knowing my son will be okay…….

Cinderella, Santa, Haunted Houses and other “Scary Stuff” (or: Vacation debacles that worked out somehow)

Posted by TakingItAStepAtATime

A few years back…. well, probably more than just a few, we took a trip to Lake George. I remember going there as a kid. I remember Story Town, which we discovered when we arrived was now just a small part of The Great Escape Amusement Park. I remembered the North Pole that was quite a drive from Lake George, but worth the trip. Specifically I remembered that in Story Town there was a Cinderella’s Pumpkin Carriage ride. My son was a Cinderella fanatic. He was obsessed, still is at 22. “Citronelle” was one of his very first words.

We arrived at the Great Escape and at the entrance was a sign listing all of the rides that were not operating that day. You guessed it…. Cinderella’s Carriage was on the list! Well, he got to SEE the carriage anyway and since there was also a castle (sort of, it was just a Prop) he got over the carriage ride a little more easily that I thought he would.

We had a good time at the park anyway. I think I was more disappointed than DC was. I was just so looking forward to him being able to ride in the carriage. He would have been thrilled.

The next day we were heading to the North Pole. This would definitely make up for the missed carriage ride! I checked the local paper the day before and found an ad that stated it was open daily and listed the hours of operation. It took quite a long time to get there – about an hour and a half, if I remember correctly. When we arrived at the park we found it “Closed for Construction” for the next few MONTHS! Now I had to explain to him that the park was closed and we would not be seeing Santa today. That went well…………..(not!)

On the way back to Lake George, we happened upon another very small park called “The Magic Forest”. The park was small, cute but very run down and old. DC didn’t care. He made me walk through a dusty, beat up “Princess House (cave)” 20 times or more. The Princess ~~house~~ cave was filled with dirty mannequins with peeling paint with cobwebs everywhere, but he LOVED it!

20 trips through the Princess House

We took a ride on the train that got stuck on the way up a hill and the employees had to get out and push, but he still loved it.

There was also a SANTA! So the second day of our trip was saved!

Santa Saves the Day!

The next day we decided to walk though the town. I remembered a pretty cool wax museum which, surprisingly was still there. We also came upon a Haunted House. DC loves all things Halloween and loves Haunted Houses; always did, even when he was very young.

He wanted to go in. After only two minutes inside, I began to realize that this was a mistake. He was terrified. He put both arms around my waist and I had to keep both of my arms around his neck/head; and this was the way we walked through the rest of the house, with DC walking sideways facing my side, with both arms around me and both my arms around his neck. All the way thorough, all I could think was “What have I done? This child is terrified! I’ve scarred him for life”. I felt so bad that he was so frightened. I kept telling him that he was okay and it was all make-believe. We finally made it out and he seemed all right, but I still felt awful. It WAS really, really scary.

We continued down the street. I continued to ask him if he was okay and told him to remember that it was all just make believe. He seemed fine.

As we were walking DC stopped, pointed and said “Go In”. I looked over and he was pointing at another haunted house. I tried to explain to him that this was a “Scary House” just like the last one and I really didn’t think he wanted to go in. DC kept pointing and saying “Go in” and was now dragging me toward the line. All the while I was trying to explain that this is scary just like the last one. He got me to the line that I had no intention of getting in, and he proceeded to wrap both arms around my waist and had me put my arms around his neck/head and got “into position” to “Go in”.

Apparently, he did understand that this was another haunted house and as much as I thought he was terrified, he wasn’t – he loved it and he was “Going in!”

So, no…… Not scarred for life at all.

DC did get to ride in Cinderella’s Carriage a few years later at another park in New Hampshire.

He still loves Haunted Houses, but you would never know this as he’s going though them.

There’s No Place Like Home

Posted by TakingItAStepAtATime

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

“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”