2016 Top 5 Posts, #2 1/2 – But does he know……

The following post was not written in 2016. It was written two years ago. I am including it as part of my “Top 5 Week” because it actually received more views this year than it did when it was originally posted. I also have a post banging around in my head that runs along this line, so I decided to give it it’s rightful place in the line up.

Two years later; I still really do not know…..

But does he know……

Lost in thought NY

I’ve been asked quite a few times –  twice just this past week, if I have ever told DC that he has autism and if so how did I approach the subject. Most of the questions came from mothers with children that are just beginning to or do already realize that they are different from their classmates and friends.

To be perfectly honest, I really do not think that DC is aware that he is different – I do not know if this is a good thing – at the moment I am going with – yes, but I really do not think he sees any differences between himself and other ‘men’ his age, or anyone for that matter. I really do not believe age is a factor in anything he thinks about or notices. I don’t think age means anything to him at all.

That being said, it is never perfectly clear just what he might understand and what he does not. I really do not know what goes on in his head at times. I Know that just because he doesn’t seem to notice or understand, does not always mean that he doesn’t. Going on the small chance that he may actually know that he is different… yes, I have told him. I have told him many times, since he was very young.

We don’t have “sit down and talk about it” sessions because he becomes overwhelmed with too much information. He needs examples, he needs to see something. We also can not  talk about it too often – when we talk about anything too often, it makes him anxious – he thinks something is wrong.  I never want to give him the impression that anything is ‘wrong’ with him. He doesn’t need that.

I have to take the opportunities when they come. Because he is very visual, I try to approach the subject when we are watching TV or reading something that happens to have a character with Autism. The first time I brought it up to him, we were watching TV.

I remember starting out by pointing out the character.

“DC, do you see that boy?”

“yes”

“He has autism. Do you know that you have autism too”

“yes” (he answers “yes” to just about everything)

“Do you see the way he flaps his arms? Who else does that?”

“You” (pronoun confusion – ‘you’ instead of ‘me’)

“Autism means you and the boy may think about things a little bit differently than Mom and some of your friends. Can you say ‘Autism’?”

“Autism” (usually I can type his pronunciations, but I can not type his pronunciation of the word Autism)

We’ve gone through this scenario many times – arms flapping – loud noises – whatever happens to be going on with a character or story.

We talk about it when we participate in an Autism Walk or fundraiser. We talk about which of his friends have autism. I can not get into too much into detail with him, I just point things out as they come up – a character, a fundraiser, his friends….

I point it out to him when he is watching his sign language sing-a-long DVD’s. I explain to him that his autism made it harder for him to speak at first (he was non-verbal until he was 7), this is why he went to speech therapy with Liza for so many years.

He was always very happy to see Liza every week. He worked hard.

(He LOVES Liza)

Before he learned to speak, he used sign-language.

He was always happy to see Sandi for sign. He worked hard with her as well.

(He LOVES Sandi)

Speech therapy and sign language were “good” things in his mind – fun time. This can be directly attributed to the insight and resourcefulness of both Liza and Sandi and the way they choose to make the process fun by working from his interests and incorporating them into his sessions. I am 100% sure that Liza can recite the “Wizard of Oz”, in every variation to this day. They made him happy.

We’ve discussed* it many, many times over the years and in many different ways, but for a boy who remembers everything, he can not give me the word “Autism” at any other time.  Unless I ask him to repeat it for me, he does not seem to even remember ever hearing the word. This just strengthens my belief that he really does not understand any of it. He does not know that he’s different and for now, that is fine with me. My goal here is not to make him feel that he is different.

So why do I continue to talk about it?

On the chance that he does recognize this now or later on, I don’t want him to wonder and not be able to communicate the question to me. This isn’t the sort of question he would ever be able to communicate.

And though I am relatively sure he does not understand, it is possible one day he may understand, or partially understand, but over and above all of that, if he were to hear “Autism” or “Autistic” elsewhere I want to be sure he doesn’t think it something that is “bad” or “wrong with him”.

I don’t and will not harp on it – I don’t feel the need to have those long heart – to – heart flowery discussions about it. He is happy, he knows he is loved. I will continue to mention it from time to time when the occasion arises, just so the word is recognizable to him and just in case he should ever wonder. If there comes a time when it seems that he might need to know more then I will try to explain it a little more in-depth or try to come up with a different way to explain it to him. For now, he seems to be just fine knowing what he knows and that is really all I want.

I wish I had a better answer for the people who asked…

Have I told him?  – Yes.

But does he ‘know’?

I may never know for sure….

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Hey! That’s not in the script!

Home

About a year or so ago, I wrote a post about the difficulty DC has with using the telephone (Don’t forget to call Mom). We haven’t made all that much progress since that post but we continue to work at it. As I said in that post, he does know how to use the telephone, but he only uses it when he is told to. It is never spontaneous. Most of his calls are to me, to tell me he is leaving work and again to tell me that he is home.

Much of the conversation with me when he calls is a script. There were a few times that he was late calling me to tell me that his transportation arrived. Wondering if he had just forgotten,  I called him and he told me he was “going home nowwwwwww”, which is what he tells me every day. As it turned out, he was not in the car – he was not going home. The car was running late. He has his script and he rarely deviates from that script.

It was a very long process – a very long process to teach him how to get into the house by himself. Because I work and because his dismissal time from school seemed to get earlier and earlier with each step up (from elementary to middle school to high school), I was always worried that, due to traffic or some other unforeseen circumstance, he might arrive home before I did. I wanted him to be able to get himself in, lock the door and call me – just in case. That whole process is a blog for another day.

He does now have someone after work that comes to the house and is with him for life skills and community activities for 2 hours a day. Still, there might be times when his car is early and he arrives before his aide does. It does not happen often but do I always want him to be prepared.

Having said that it does not happen often, coincidently it this happened twice just recently….

The Phone Rings:

DC: Hi Mom, I am home.

Me: Hi, DC. Is Mrs. H there yet? (I knew she wasn’t, but would be there in seconds – but still I like to try to get the correct replies)

DC: No.

Me: Did you lock the door?

DC: Yes

Me: Did you lock the door?

DC: No.

Me: Please go and lock the door. You are supposed to lock the door as soon as you come home.

DC: Okay

Me: Don’t hang up! (He does not understand that he can just put the phone down, lock the door and come back)

He hangs up…

and second later the phone rings

DC: Hi Mom, I am home again!

I mentioned his “Going home nowwww” script above. He uses the same script every day. Once in a great while he will change it up a bit, but it does not last. He reverts to his regular script the next day. As I also said above, I can’t take his scripting to be what is actually happening. Fortunately he always talks to me on speaker, so if what he is telling me, is not what is really going on someone – his boss or the driver will chime in to give me the real story.

The other morning DC, as he does every day, announced that he only had “Two Dollars Left” . This is always his way of telling me he wants money for hot lunch at work. He doesn’t understand money and I think he believes I have a never-ending supply of it in my wallet. I discovered that I didn’t have any cash so I told him he would have to make his lunch that day. He was not happy about this at all and began to get very demanding about money for hot lunch. I explained to him again that I didn’t have any money to give him for lunch and if he did not stop behaving this way, I would not give him lunch money any more and he would have to make his own lunch every day.

He stopped.

When he called me from the car on his way home that afternoon – he went right into his normal conversation:

“Hello Mom”

“Hi, DC. What are you doing?”

“I am going home Nowwww”

“Did you have a good day?”

“Great”

“Okay, call me when you get home”

“Okay”

That morning’s conversation must have been on his mind all day because before he hung up he yelled

“I want Mom’s money!!!!!!!!”

I could hear the driver laughing and I really couldn’t help laughing myself. I guess when there is something that is really important to him, especially when there is food involved, he can and will go “off-script” to make that perfectly clear to me.

But does he know……

Lost in thought NY

I’ve been asked quite a few times –  twice just this past week, if I have ever told DC that he has autism and if so how did I approach the subject. Most of the questions came from mothers with children that are just beginning to or do already realize that they are different from their classmates and friends.

To be perfectly honest, I really do not think that DC is aware that he is different – I do not know if this is a good thing – at the moment I am going with – yes, but I really do not think he sees any differences between himself and other ‘men’ his age, or anyone for that matter. I really do not believe age is a factor in anything he thinks about or notices. I don’t think age means anything to him at all.

That being said, it is never perfectly clear just what he might understand and what he does not. I really do not know what goes on in his head at times. I Know that just because he doesn’t seem to notice or understand, does not always mean that he doesn’t. Going on the small chance that he may actually know that he is different… yes, I have told him. I have told him many times, since he was very young.

We don’t have “sit down and talk about it” sessions because he becomes overwhelmed with too much information. He needs examples, he needs to see something. We also can not  talk about it too often – when we talk about anything too often, it makes him anxious – he thinks something is wrong.  I never want to give him the impression that anything is ‘wrong’ with him. He doesn’t need that.

I have to take the opportunities when they come. Because he is very visual, I try to approach the subject when we are watching TV or reading something that happens to have a character with Autism. The first time I brought it up to him, we were watching TV.

I remember starting out by pointing out the character.

“DC, do you see that boy?”

“yes”

“He has autism. Do you know that you have autism too”

“yes” (he answers “yes” to just about everything)

“Do you see the way he flaps his arms? Who else does that?”

“You” (pronoun confusion – ‘you’ instead of ‘me’)

“Autism means you and the boy may think about things a little bit differently than Mom and some of your friends. Can you say ‘Autism’?”

“Autism” (usually I can type his pronunciations, but I can not type his pronunciation of the word Autism)

We’ve gone through this scenario many times – arms flapping – loud noises – whatever happens to be going on with a character or story.

We talk about it when we participate in an Autism Walk or fundraiser. We talk about which of his friends have autism. I can not get into too much into detail with him, I just point things out as they come up – a character, a fundraiser, his friends….

I point it out to him when he is watching his sign language sing-a-long DVD’s. I explain to him that his autism made it harder for him to speak at first (he was non-verbal until he was 7), this is why he went to speech therapy with Liza for so many years.

He was always very happy to see Liza every week. He worked hard.

(He LOVES Liza)

Before he learned to speak, he used sign-language.

He was always happy to see Sandi for sign. He worked hard with her as well.

(He LOVES Sandi)

Speech therapy and sign language were “good” things in his mind – fun time. This can be directly attributed to the insight and resourcefulness of both Liza and Sandi and the way they choose to make the process fun by working from his interests and incorporating them into his sessions. I am 100% sure that Liza can recite the “Wizard of Oz”, in every variation to this day. They made him happy.

We’ve discussed* it many, many times over the years and in many different ways, but for a boy who remembers everything, he can not give me the word “Autism” at any other time.  Unless I ask him to repeat it for me, he does not seem to even remember ever hearing the word. This just strengthens my belief that he really does not understand any of it. He does not know that he’s different and for now, that is fine with me. My goal here is not to make him feel that he is different.

So why do I continue to talk about it?

On the chance that he does recognize this now or later on, I don’t want him to wonder and not be able to communicate the question to me. This isn’t the sort of question he would ever be able to communicate.

And though I am relatively sure he does not understand, it is possible one day he may understand, or partially understand, but over and above all of that, if he were to hear “Autism” or “Autistic” elsewhere I want to be sure he doesn’t think it something that is “bad” or “wrong with him”.

I don’t and will not harp on it – I don’t feel the need to have those long heart – to – heart flowery discussions about it. He is happy, he knows he is loved. I will continue to mention it from time to time when the occasion arises, just so the word is recognizable to him and just in case he should ever wonder. If there comes a time when it seems that he might need to know more then I will try to explain it a little more in-depth or try to come up with a different way to explain it to him. For now, he seems to be just fine knowing what he knows and that is really all I want.

I wish I had a better answer for the people who asked…

Have I told him?  – Yes.

But does he ‘know’?

I may never know for sure….

The Bookstore Revisited…….

We love Salem, MA. It is one of the places, along with New York City, NY and Mystic CT, that we visit any time we have the chance. Salem has been our Halloween/October destination for many, many years. We also try to visit during the year when it is not as crowded. So we are in Salem a couple- three times a year, at the least.

DC has a “favorite book store” everywhere we visit, but the Derby Square Book Store is his all time favorite anywhere. We last visited Salem in April on Easter weekend. We were spending the weekend in Boston and decided to take a quick trip to Salem on Saturday. When we arrived at DC’s beloved bookstore, we were horrified to find that it was closed! (see: Book Store Blues)

Fortunately we found that it would not be closed forever. The new owner was outside with a table of books to sell, but no one was allowed inside because they were packing up all of the old stock. She let DC inside, thankfully and saved the day!

Earlier this month, I had the week off, DC also had the week off from his job/program so that he could attend camp. I wanted to take a trip to Salem but we didn’t have a lot of options even though we were both off because  I didn’t want him to miss a day of camp. We opted to go on Sunday.

Before I told DC that we would be visiting Salem, I had to be sure that this store had re-opened. I started searching twitter, instagram and the web for information of the re-opening. I was able to out that the store had re-opened, under the name of “Wicked Good Books” , but did not know if it was open on Sundays. I didn’t know if we should take the chance. I didn’t know what he would do if we went there a second time to find it closed. But I also did not know when we would have the next opportunity to visit.

I talked to DC and explained we may be going to Salem on Sunday. The first thing he said was “Bookstore”. I told him that yes, his book store was open again, but I wasn’t sure if it was open on Sunday.

Me: “Do you understand, DC? It might not be open on Sunday. But don’t worry, if it is not open we will go back another time.”

DC: “Yes, I understand”

30 seconds go by……..

DC: “Bookstore?”

Me: “Yes, Bud, if the bookstore is open, we will go to the bookstore, but Mom wasn’t able to find out if it is open on Sundays. If it is not open, we will find another bookstore on Sunday and we will go back to Salem another time when your store is open.”

DC: “Okay, Mom”

and another 30 seconds pass……

DC: “Bookstore?”

This went on for a while. until I thought that maybe he finally understood, but I wouldn’t really be sure until we arrived there……..

My next concern was that he was going to be upset when he saw the store was “different” (thankfully for me – now I didn’t have to worry that books were going to come toppling down on him). I began explaining this to him back in April, when we knew it was changing owners, and more-so as soon as we decided to go to Salem in July. I got the standard “Okay, Mom. I understand” reply from DC, and again, I couldn’t really know if he really did understand, but I was really hoping that he did.

We arrived in Salem and after the initial panicked run for the restroom, which only brought him closer to the bookstore (that may have been his plan all along), we headed down the street to the store and thankfully, it was open!

The funny thing was, after all of the explaining and worries, it did not seem to faze him in the least that everything was so different and that books or entire shelves were not going to fall if he took something off of the shelf the wrong way. He headed directly to the back corner where all of the children’s books were located in the old store, which turned out to be just where they were set up now and his “hunt” began.

He found 3 or 4 books that he wanted and we went to the register to pay. The owner recognized him immediately from our April visit and she commented that she was also worried that it would upset him to find so many changes. I told her that I had been explaining this to him since we left in April but I still wasn’t sure how he would react when he actually got here.

She asked him if he liked the store and he answered with an emphatic “Yes!”

I asked him if this was still his favorite book store and again he answered, loudly “Yes!”

The other girl running the register told him she liked his “Rock, Paper, Scissors, Lizard, Spock” shirt so he was in his glory all around (my boy is a big ham).

*Bookstore revisited – Check
*Found Books he wanted – Check
*Still his favorite store – Check
*We could relax & enjoy the rest of our visit – Check

If you are ever in Salem, be sure to visit “Wicked Good Books” – It is “DC-Recommended and Approved” ….

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“Hi, Mom! Did you have a nice day?”

only to dollars

Many of you may know that DC is obsessed with food. He has breakfast and he is already worried about lunch. After lunch we move on to:

“Dinner is later after that” he always seems to add “after that” when he talks about “later”.

He must give me his breakfast order before he goes to bed every night. There is never anything different about his order from one night to the next, but he feels compelled to tell me every night before he goes to bed.
There were a few times (very few) when DC forgot for one reason or another, to remind me of his breakfast order before he went to sleep. On those occasions, he came into my bedroom to wake me  up in the middle of the night so that he could give me his breakfast request.

Most days, when I get home from work DC does not even say hello. He gets his wallet, holds it open and says “Only two dollars”. This is his way of telling me that he wants money for lunch at work the following day (and for some reason, there always seems to be two dollars left in his wallet).
His only concern at that moment is his lunch the next day.
My reply is usually “Hi, Mom! How are you? Did you have a nice day?” – at this point he realizes that he did not even say hello before asking for money, he says hello, but then gets  right back on the subject at hand – his wallet.

We run through this same routine very often…..

…………………..until the other day, that is.

DC came over to me, with open wallet in hand, as usual.

But instead of telling me that he only had two dollars, he ran through every greeting he could come up with all in one sentence as if he was just trying to get it all over with. It was such a monotone, run-on delivery, that it took me a second to understand what he doing:

“Mom, how are you feeling, hello, nice day, yes, nice to see you, good day, happy, hi there”

Then when he ran out of random greetings……

“Mom, only two dollars”

 

“Please allow me to introduce…..”

 (This post probably qualifies as more of a facebook status, but it made me laugh, so a blog it is!)

Pleased to meet you

Pleased to meet you

DC loves to make introductions. I don’t believe he really understands the point of introducing people. He notices people making  introductions in the movies he watches and in the books that he reads. It doesn’t matter if the people he is introducing already know each other. It doesn’t matter if he knows they already know each other, when he gets to urge to make introductions, he does. He is usually very formal about it as well –

“I would like to introduce my mother, Vickie Lastname”

or

“It is my pleasure to introduce to you, my mother, Vickie Lastname

or (my favorite)

“Please allow me to introduce my ‘lov-er-ly’ mother, Vickie Lastname

Recently we attended a pasta dinner fundraiser to benefit the summer camp DC has attended since he was 5 years old. We purchased enough tickets for DC, Doug, my mother and myself and we sold a few more to friends and family members.

Seated with DC and I were,

– My mother (DC’s grandmother)

– Doug (who was also pulling DJ duty)

– DC’s grandparents on his Dad’s side

– DC’s Dad – Tracy

– DC’s stepmother (I generally do not use the stepmother title to describe her because DC is so very much into Disney that there is no explaining to him that all stepmothers are not evil) Karr-ee-anna – in DC-speak

-DC’s Aunt K

-Her husband R

– My friend Tonya

– and DC’s friend, Salli

Due to the crowd, Doug’s father and sister had  moved over to the next table.

DC was very excited that everyone was there at the same time. He sat at the table as if he were “holding court”. He then decided that introductions were in order.

Turning his attention to his father, Tracy:

“Tracy, this is my mother Vickie Lastname”

and

“Vickie, I would like to introduce you to my father, Tracy (same) Lastname”

~ Insert Dramatic Pause ~

.

“Um…….”

.

 

“we’ve met”……………………..

 

Photo: Credit "Tonya"

Dc and Friends Dancing the night away! Photo Credit: “Tonya”

 

Don’t Forget to Call Mom

Don't forget to call Mom

Don’t forget to call Mom

There are many times, even at this point that I really do not know if DC really understands certain things or if he is just going through the motions; the motions that were taught to him. There are other times that I am surprised to find that he really does understand, even if he is using one of his scripts to communicate it. It is not always easy to tell the difference. I don’t think it will ever be easy, but I do not think that using the telephone will ever be one of those things he completely understands.

I have worked long and hard over the years but DC still has a hard time using the telephone. To begin with, he just doesn’t like it, he doesn’t. When he was younger, he couldn’t even bear to have the receiver on or near his ear. He has always had a very low tolerance for anything having to do with his ears, so using the telephone or just listening to someone that wanted to say hello to him was just unbearable for him.

Secondly, as I stated above,  I really do not think he understands it completely. If he dials incorrectly, he doesn’t understand that he should hang up and dial again, he just keeps dialing. I finally got him to the point where he could tolerate the phone on his ear. He has memorized our phone number, but as he doesn’t always understand the question “What is your phone number”, I don’t know if he would be able to give it to anyone if he needed to. He does know how to call me.

He is still not all that thrilled about using the telephone, though. If he does get a call, it has to be brief. When he’s had enough, he will say nothing and just hand me the phone. I have to tell the party on the other end (who is usually still talking to him, not knowing he’s passed off the call to me) that DC is done talking. Not very long ago when he was talking to his father, he handed me the phone when he decided he was finished, as usual. I handed it back to him and said “DC, you have to say good-bye to people on the phone when you are finished.”

He took the receiver back and said “Goodbye to the people”

He does have an iPhone now. He knows how to use it. He is very good at using iTunes and YouTube, but still the phone part of it is difficult. He is supposed to call me on my cell phone when his transportation arrives to pick him up from work; he does, but it is a script.

“Hello Mom”

“Hi, DC. What are you doing?”

“I am going home Nowwww”

He says this the same way in the same tone, with the same emphasis on the “Ow” in “now” – every day.

“Did you have a good day?”

“Great”

“Okay, call me when you get home”

“Okay”

When he gets home he is supposed to call me from the house phone because I want him to know how to DIAL my phone and memorize my cell number as well.

He does call just about everyday. There were and still are a few days that he forgets and I have to call him. Hearing the phone ring, must remind him he has forgotten to call me so instead of just answering the phone, he picks it up and dials my number while I am on the phone, and then goes though his “at home” script. If for some reason it is not me calling him, the person on the other end gets the script and then he hangs up.

“Hi, Mom I am home”
“Hi DC, is Mrs. H there?” (she has already texted me to let me know she is there)
“Yes”

“What are you going to do today?”
“Go to ____” (enter, Library, Track or whatever  activity depending on what day of the week it is)
“That sounds like fun. Okay, I will see you in a little while”
“Okay, Goodbye Mom.”

He does not understand voicemail or answering machines, even though I let him listen to mine and try to explain what it is, I just can’t seem to come up with an explanation that he can understand. If he does leave a message on my phone, I don’t think he realizes he is leaving a message, he just goes through his script and hangs up, thinking I must not have a lot to say that day???

He will not use the phone spontaneously. This is something I really want him to understand. I want him to think to call me if something is wrong or if he happens to get lost or for any reason at all. I want it to occur to him if something goes wrong, that he should use his phone. I really am not sure that it would occur to him. I’ve gone over this many times, but as many times as he says he understands, I don’t think he does. He has never called anybody spontaneously, he has just about never asked to call anyone. After all this time, he still only uses the telephone when he is told to, to call me from his transportation and to call me when he gets home.

We’ll keep working on it….

A few days ago, I had to leave work early for a dental appointment and then a doctor appointment. The appointments went quickly, so I was home before his aide arrived to meet him after work. He called me from the car as usual. When he arrived home both his aide and I were there. I was talking to Mrs. H in the kitchen. DC came in, he said hello to me and Mrs. H and gave me a hug.

Mrs. H and I were still talking in the kitchen, while DC went into the living room, I thought to have his snack “alone” (he likes to be alone when he has his snack).  My cell phone, which was charging right in front of the phone in the living room, started to ring and I said “I’ll bet he’s calling me”.

From the kitchen, I asked:

“DC, what are you doing?”

“Hi, Mom. I’m home” (from the living room talking into the phone, probably to my voicemail).

When he is doing what he was told to do, I try not to do anything to throw him off or make him forget to call me the next time, so I went with it.

“Is Mrs. H. there?”

“Yes”

“What are you going to do today?”

“Go to the Li-ber-ary”

“Okay, I’ll see you in a minute”

“Okay, Mom, see you later!” and he came back into the kitchen.

Yes, Rule – followed……

but there is still some work to do………………….