Please Translate – “Mom’s Office”

This post is yet another in a long line of posts about the way DC communicates or is not able to communicate.  Let me first say, in case you are new here; although he was non-verbal until he was seven years old – DC is now what you would call verbal.

Since is is the last day of Autism Awareness Month, I decided we could talk about communication one. more. time.

Verbal does not always equal communication.

He can recite lines from movies. He can usually tell me what he wants. He cannot always tell me when there is something wrong or if something has happened. Even when he has the words, he cannot always use them to communicate what he is trying to tell me or anyone else.

There are times when he will still use his sign language to help in his communication when something is important enough to him. In most cases if I do not get what he is trying to tell me right away, he gives up and just says “Nothing wrong”. Once we get to “Nothing Wrong” the conversation and whatever he was trying to tell me is lost.

As I have written before; one of the hardest things for DC to convey to me is when he is not feeling well or if something hurts.

Over and above the fact that he DOES NOT want to go to the doctor or “rest” at home, he does not often have the words to tell me when he does not feel well.  Or he DOES have the words, but cannot put them together or figure out how to use them in certain situations.

This is an example of a conversation we had just the other day…

DC came running into the room stimming wildly and it was apparent that he was upset about something.

I asked him what was wrong.

DC: “My heart is beating, beating, beating”

Me: Does your chest hurt?

DC: “No! My heart is beating – boom boom”

I do understand after all of these years that his “Heart Beating” means that he is upset about something or something scared him. It does not have anything to do with his heart but I always ask (just in case) if his chest hurts.

Me: Can you tell me what happened?

DC: (pointing to his mouth) Sink!

I went into the kitchen and he pointed to the sink – which was relatively clean.

Me: What happened?

DC: (annoyed that I did not understand) MOM’S OFFICE!!!!

Now, knowing DC as I do, I had to search my brain and think of something that happened to him at some point over the years when he was at work with me.

Fortunately, I remembered.

He was in Middle-School. MIDDLE SCHOOL!

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!) ~ From:   Look in the Mirror and Spit Cookies, September 2013

Me: Did you throw up in the sink?

DC: Yes!

Obviously, not very much and he must have run the water before coming to get me. He has been jumping and dancing around the kitchen so I suspect that all of that activity was the cause of the situation as he did not seem sick otherwise.

Since the “Spitting Cookies” incident (linked above and here) he has learned and does know the word. He has used it before, but just could not figure out how to use it to tell me what was wrong.

The plus side of it all is that he tried to tell me and did not give up (although one would have to be me in order to figure it out). He does that sort of thing often. He brings up an example of something that happened at an earlier time to try to get his point across. This often works with me, but everyone else that he deals with in his day to day life do not have all of this information stockpiled in their memory and often do know know what is important enough for him to remember. What is important to him is not always what others would even give a second thought to.

Verbal and Communication?

Two very different things.

 

 

 

Speaking of Bacon and Delayed Reactions…..

The subject of DC’s former aversion to bacon (it still creeps up every once in awhile) came up the other day and a discussion of his delayed reactions was had a little while back. Both made me think about this post from 2015, when he was convinced that bacon had given him the flu and the delayed reaction he had about it.

Imaginatively titled:

BACON


bacon

DC’s reactions are not always immediate. Due to these delayed reactions, it is not always easy for me to figure out just what is going on or what the problem might be.

When he was 4 or 5 he stopped eating – completely…. for close to a month. He would not swallow solid food.  With a lot of  coaxing he would put it in his mouth, but that was as far as it went before he would spit it out. After a few visits to the doctor to be sure this was not a medical issue, I, with the help of his teacher and IA, started looking for ideas to get him to eat again. I bought all of his favorite foods. They worked with him in the classroom. I even resorted to candy. Nothing!

One day, I was making him a steak, one of his favorites at the time. It was right then and there I realized what was going on. He actually looked frightened of the steak. This wasn’t a sensory thing, it was fear. After seeing the look of utter terror on his face I remembered a choking incident with a bagel one morning about a month before. The thing about it was that he didn’t react right away – otherwise I would have figured this out much sooner. He was fine afterwards and even finished the bagel he was eating.

I couldn’t pin-point exactly when or why the delayed reaction kicked in but it did and he was afraid to eat.  Once I figured out the reason, I was able to help him get back to eating solid food again. We started with pudding and yogurt and just dipped the tip of the spoon in, just so there was a taste on the spoon. I continued this way, increasing the taste on the spoon until he was taking a regular spoonful. I added other foods like applesauce to the menu. When that part was behind us, I started breaking up bread, into almost crumbs, until he realized it was safe for him to eat again.

DC used to ride horses. He rode once a week for a good 5 years, if not longer. One day his teacher had him riding in the outdoor rink (I’m sure there is a proper name for that, but I am calling it a rink) – he didn’t ride in the outdoor rink very often. Most of his lessons were inside. When he did ride outdoors, it was usually down the driveway, across the street and up the dead-end road and back. On this particular day in the outdoor rink (seriously, Kathleen is not going to be happy that I don’t know the proper name), his horse spooked, reared up went galloping wildly. It scared him, it scared me, but he stayed on and continued his lesson with no problem.

His indoor lesson the following week went well. His ride outside on the driveway route was fine too. It had to be a few months later when they tried to take him out to the outdoor rink that the fear kicked in. He wasn’t having any of it. He acted like he was never on a horse before. After thinking about it for a minute, I remembered and explained his reaction to the assistant. He was a little better once they went back inside but not at the level he was at the beginning of the lesson. The outdoor rink brought out his fear and that fear carried over to the indoor rink. It took a while for him to feel comfortable again.

About a year later his horse spooked during his inside lesson. Again, he seemed fine – Me? – Not so much. I was close to heart failure, but I didn’t let him see that – and rode the full hour as if nothing had happened. But… the following week he was terrified. He continued to be terrified until we finally just gave it up altogether. even though I was relieved to let it go,  it was a shame because at one time he really liked it. Horses were one of the few animals he was not afraid of. He was actually pretty good at it.

lm

So… over our Christmas vacation, DC got sick. Other than his bouts with his allergies, he rarely gets sick, but when he does, he really goes big! For a good few days afterward, he really didn’t want to eat at all. He seemed fine otherwise so I wasn’t really sure if he was still not feeling well or if he was just afraid to eat. I believe and still do, that he was #1 – exhausted from being sick and #2 – he was afraid and relating his illness to food. As we were on vacation and eating in restaurants daily, this was probably at least partially the case. He was eating lots of things that he doesn’t normally eat, at least not on a daily basis.

When he did finally feel like eating at little bit, there were certain foods I wanted him to stay away from so as not to upset his stomach all over again. He continued to be a little bit leery about eating for a good week after we were home. Last week, after going to see the Buddy Holly Story with his friend, BB, we all went out to dinner. DC ordered a cheeseburger with bacon. When it arrived, he removed the bacon and left it on the plate. I asked why, but I couldn’t get an answer. Now, I am almost positive he had bacon at least once since we’d come home from vacation, so I didn’t really think all that much about it.

DC discovered bacon a few years ago on a cruise ship and like his garlic bread, takes every opportunity to order it. I used to buy it for him, but decided that he really did not need to eat that much bacon, so I let it become one of his “restaurant only” foods, like cheeseburger and fries.

This week, at the hotel where we were ‘Snow-cationing’, bacon was available on the breakfast buffet. I didn’t really notice it until morning #3, but there was no way that DC had not seen it on the previous two mornings. I asked him if he wanted bacon. He started signing “all done”, a sign that he still uses when he REALLY does not want something. I asked him if he was sure. “No, Bacon!” – while signing more adamantly. “I don’t want to get sick! I don’t want to get sick!”.

Bacon had been one of the things I did not let him have after he got sick on vacation. Now, in his mind it was the reason he had gotten sick. There were a couple of other people in the breakfast room and I didn’t want him to continue yelling about “getting sick”, so I explained quickly that he did not have to have the bacon, but bacon was not the reason he became ill on vacation. He was getting more and more anxious about it, so I just let it go.

I know that some may disagree, but bacon is not really a necessity in anybody’s life, so I am not going to push it.

Now if I could somehow get him off the cheeseburgers and fries…….. hmmmmm.

Bacon

bacon

DC’s reactions are not always immediate. Due to these delayed reactions, it is not always easy for me to figure out just what is going on or what the problem might be.

When he was 4 or 5 he stopped eating – completely…. for close to a month. He would not swallow solid food.  With a lot of  coaxing he would put it in his mouth, but that was as far as it went before he would spit it out. After a few visits to the doctor to be sure this was not a medical issue, I, with the help of his teacher and IA, started looking for ideas to get him to eat again. I bought all of his favorite foods. They worked with him in the classroom. I even resorted to candy. Nothing!

One day, I was making him a steak, one of his favorites at the time. It was right then and there I realized what was going on. He actually looked frightened of the steak. This wasn’t a sensory thing, it was fear. After seeing the look of utter terror on his face I remembered a choking incident with a bagel one morning about a month before. The thing about it was that he didn’t react right away – otherwise I would have figured this out much sooner. He was fine afterwards and even finished the bagel he was eating.

I couldn’t pin-point exactly when or why the delayed reaction kicked in but it did and he was afraid to eat.  Once I figured out the reason, I was able to help him get back to eating solid food again. We started with pudding and yogurt and just dipped the tip of the spoon in, just so there was a taste on the spoon. I continued this way, increasing the taste on the spoon until he was taking a regular spoonful. I added other foods like applesauce to the menu. When that part was behind us, I started breaking up bread, into almost crumbs, until he realized it was safe for him to eat again.

DC used to ride horses. He rode once a week for a good 5 years, if not longer. One day his teacher had him riding in the outdoor rink (I’m sure there is a proper name for that, but I am calling it a rink) – he didn’t ride in the outdoor rink very often. Most of his lessons were inside. When he did ride outdoors, it was usually down the driveway, across the street and up the dead-end road and back. On this particular day in the outdoor rink (seriously, Kathleen is not going to be happy that I don’t know the proper name), his horse spooked, reared up went galloping wildly. It scared him, it scared me, but he stayed on and continued his lesson with no problem.

His indoor lesson the following week went well. His ride outside on the driveway route was fine too. It had to be a few months later when they tried to take him out to the outdoor rink that the fear kicked in. He wasn’t having any of it. He acted like he was never on a horse before. After thinking about it for a minute, I remembered and explained his reaction to the assistant. He was a little better once they went back inside but not at the level he was at the beginning of the lesson. The outdoor rink brought out his fear and that fear carried over to the indoor rink. It took a while for him to feel comfortable again.

About a year later his horse spooked during his inside lesson. Again, he seemed fine – Me? – Not so much. I was close to heart failure, but I didn’t let him see that – and rode the full hour as if nothing had happened. But… the following week he was terrified. He continued to be terrified until we finally just gave it up altogether. even though I was relieved to let it go,  it was a shame because at one time he really liked it. Horses were one of the few animals he was not afraid of. He was actually pretty good at it.

lm

So… over our Christmas vacation, DC got sick. Other than his bouts with his allergies, he rarely gets sick, but when he does, he really goes big! For a good few days afterward, he really didn’t want to eat at all. He seemed fine otherwise so I wasn’t really sure if he was still not feeling well or if he was just afraid to eat. I believe and still do, that he was #1 – exhausted from being sick and #2 – he was afraid and relating his illness to food. As we were on vacation and eating in restaurants daily, this was probably at least partially the case. He was eating lots of things that he doesn’t normally eat, at least not on a daily basis.

When he did finally feel like eating at little bit, there were certain foods I wanted him to stay away from so as not to upset his stomach all over again. He continued to be a little bit leery about eating for a good week after we were home. Last week, after going to see the Buddy Holly Story with his friend, BB, we all went out to dinner. DC ordered a cheeseburger with bacon. When it arrived, he removed the bacon and left it on the plate. I asked why, but I couldn’t get an answer. Now, I am almost positive he had bacon at least once since we’d come home from vacation, so I didn’t really think all that much about it.

DC discovered bacon a few years ago on a cruise ship and like his garlic bread, takes every opportunity to order it. I used to buy it for him, but decided that he really did not need to eat that much bacon, so I let it become one of his “restaurant only” foods, like cheeseburger and fries.

This week, at the hotel where we were ‘Snow-cationing’, bacon was available on the breakfast buffet. I didn’t really notice it until morning #3, but there was no way that DC had not seen it on the previous two mornings. I asked him if he wanted bacon. He started signing “all done”, a sign that he still uses when he REALLY does not want something. I asked him if he was sure. “No, Bacon!” – while signing more adamantly. “I don’t want to get sick! I don’t want to get sick!”.

Bacon had been one of the things I did not let him have after he got sick on vacation. Now, in his mind it was the reason he had gotten sick. There were a couple of other people in the breakfast room and I didn’t want him to continue yelling about “getting sick”, so I explained quickly that he did not have to have the bacon, but bacon was not the reason he became ill on vacation. He was getting more and more anxious about it, so I just let it go.

I know that some may disagree, but bacon is not really a necessity in anybody’s life, so I am not going to push it.

Now if I could somehow get him off the cheeseburgers and fries…….. hmmmmm.