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 Love

There are many words and phrases spoken by DC that he does not pronounce properly. Most of the time I will help him to try to pronounce them correctly or at least a little closer to correctly so others are able to understand what he is saying.

There are also a few other words that are not pronounced correctly that I happen to adore his version far too much to correct him. That list is growing shorter and shorter because someone always comes along and decides that they just HAVE to teach him how to say it the “right” way.  It kind of takes a little chip out of my heart each time it happens.

Below is one of my favorite posts about one of my favorite words….

So far, no one has taken it upon them self to try to change it and should not even think about doing so.

Just don’t.

“Mom, do you love meeee?”

 

I love you Magly

From the time that I was old enough to think about it, I always promised myself that if I were ever to have children that there would never be a second in their lives that they would not know that they are loved. This would never be something that they would have to wonder about – not for a single moment…

I think I have lived up to that promise to myself.

DC can and does tell me that he loves me many times a day – complete with and accompanied by the “I love you sign”. I know that he understands in his own way, what that means. This is not to say that I believe it is always all about me. Much of the time it is but there are times when he just needs to have something to say. It’s kind of a comfort thing for him. He says it over and over again when he is in an uncomfortable situation or a place that is new to him.

But, back to me….

I especially love it when he, at 25 reverts back to “I love you Mommy” instead of Mom, Mother or Vickie.  He is probably one of the most lovable people around and I am willing to take complete credit for that.

Is it just learned behavior and not real emotion?

Is it comparable to the times that I have to make a rule because I know he does not understand something?

Is he just, in his mind, following another rule?

Is he just going through the motions because that is what he thinks he should be doing or how he should be acting?

I used to wonder about that when he was younger but now I am convinced that although I am sure that some of that lovability was originally something that he learned, it IS also very full of emotion.

All of the above does not mean that he does not hear his fair share of yelling because let’s face it, every behavior can not be blamed on his autism.

When these situations arise and he is “in trouble” and after I start finding his apology notes everywhere – we always sit down and have a talk.

“No matter how upset Mom might get when you do something you are not supposed to… I always love you. When you are in trouble, I always love you. You never ever have to worry about that.”

When he is “in trouble” and we have not had the talk in what he thinks is a timely manner, he will come to me and say “Always ‘loves’ you.” He knows it, but he needs to have the talk. It’s a ritual and it is comforting to him.

DC’s ongoing “I Love you” campaign has evolved recently. While all of the above still holds true, he has added, ” Mom, do you love me?” (in his high pitched squeaky voice with the emphasis on the “me”).  I know he is not questioning the fact. I know he knows this and I know that he just wants to hear it again. I also know that this line must be something he picked up from a book or a movie because he is using the correct pronouns.

Just to change it up a bit, my response to this question is: “I love you madly”.

Just to change it up a bit more, I will ask: “DC, do you love me?”

His response is another in the long list of words/phrases that he uses that I know I should correct speech-wise, but I do not because I love the way he says them. I hope that this response never changes.

Mom, I love you ‘Magly’.

No corrections necessary……….

Let DC Be DC

Last week, while waiting for his transport to arrive, DC decided that he wanted to wear a stick-on mustache. It was Monday and as Monday mornings have been difficult for DC lately,  I let him wear it. The mustache was keeping his mind off the rising anxiety he was experiencing, so there would be no argument from me.

Much like his precious band-aides, there always seems to be a pretty good supply of stick-on mustaches on hand. He loves them. They make him happy.

As I have mentioned before:

Back in the “Olden Days”,  we were taught that our goal was to try to normalize (the doctor’s, specialist’s and school system’s word, not mine) our children – we did not know any better. In our minds, we were trying to overcome autism and teach our children to behave the way we thought the world wanted them to behave. It took me a while and I had to figure a lot of this on my own (because…. no internet).  I had to get over the idea that had been drilled into our heads as parents, that we had to make our children behave like every other child. I had to figure out for myself and understand that he was not going to fit into anyone else’s idea of ‘normal’ and that I should not be trying to make him fit that mold. I should be making it easier for him to manage his anxiety so he would be able to navigate the world outside of our door.

DC is 26. He is out of school. He does not have to adhere to a dress code at his job/program. He does not have to wear a uniform. He seems to understand the difference between working his volunteer job at the theater where there is a dress code/uniform, his Winter Guard activity where there is also a uniform, and his day job/program where there is not. He has never asked or tried to, wear one of his mustaches or plaster his arms with band-aides when he goes to either of those places.

I very rarely intervene in his clothing choices unless they are weather related or there is a safety issue. He works in the greenhouse during the summer months at his job/program so fleece sweat pants are not THE best idea. When he was younger, he always wore a purple cape. Because I have a thing about him wearing anything around his neck for fear of whatever it is getting stuck in something and choking him, I would only let him wear the cape around the house.

DC also does not like to wear anything around his neck and to be honest, I am not a fan of him having anything around his neck either. When I was a kid (an infant really), I saw Isadora, a movie starring Vanessa Redgrave about Isadora Duncan and that was the end of scarfs or anything around the neck for me – Yes, it IS hard to be me. 

In case you might be wondering; he has only ever worn a scarf once and it was on Halloween.

That afternoon when DC made his daily call to me from the car on his way home from his program, he went “off script” and said, “I’m sorry Mom.”

Now, unless we had a rough morning or something has been on his mind all day, an apology on the phone does not necessarily mean that he is apologizing to me. Usually it means that something happened at work (or wherever he had been) but he cannot communicate it to me.

Me: What are you sorry about?

DC: Took off the mustache.

Me: Why are you sorry for taking the mustache off? 

DC: Threw the mustache away. I’m sorry for mustache.

Me: Did someone tell you to take the mustache off?

DC: Threw it in the garbage.

Me: Did someone tell you to take it off?

DC: Yes

Me: Who told you to take it off?

DC: Threw it in the garbage in the Dog Bones Room (the department where he works during the winter months)

Me: But did someone tell you that you could not wear it?

DC: Yes.

Me: Who told you that?

DC: *Donna. I’m sorry Mom.

At this point I was beginning to get my back up because there was absolutely no reason for someone to tell him to take it off.

Me: You do not have to be sorry.

DC: Threw it in the garbage.

Me: That’s okay; we have more.

It went on like this for a while, but what I got out of the conversation was that he was told he could not wear it.

When I got home – I checked his “Talk Book”. There was a note from *Donna:

“I liked DC’s mustache but he must have thrown it in the garbage. I asked DC where it was and he said ‘garbage’. It’s too bad. I liked it” ~ *Donna

His apology to me was all about *Donna asking why he threw it in the garbage. He was apologizing to her because she asked where it went and he thought he had done something wrong by throwing it away.  At times when he wears his band-aids or a mustache, he is happy for the attention. Other times, if they are mentioned in any way, he takes them off. I think there are just days when he wears them because they make him happy and other days when he needs them as a calming mechanism and he does not want to talk about it. He might, at those times feel a little bit of embarrassment as well.

He wore a mustache again a few days later with no issue, and trust me – he needed it that day.

The points that I want to make here are:

If I did not receive the note in the book, I would not have been able to figure out what was going on. He did offer more information that he usually does, but it was not expressed in a way that gave me the true picture. Verbal and Communication are two different things. When I say (over and over again) that I worry because he cannot always tell me when something is wrong; this is what I mean. There are things that I have never been able to figure out.

You can see why his inability to communicate what is really happening worries me to no end.

The second point would be that we just need to stop looking at these quirks as something we have to fix or something to be made fun of.

If he needs a mustache, band-aids, a Christmas shirt in July, or a Halloween shirt in February – then that is what he needs.

Let DC be DC.

 

 

 

 

 

 

That year we weren’t home for Christmas..

 

The holiday season is here and I will admit to having a bit of a Love/Hate relationship with holidays in general. I want to love them, I do, it just does not always work out that way.  I have reached the age where I should be able to place a 2 or 3 foot silver Christmas tree on a table somewhere and have that be the end of it, but I may never achieve that particular rite of passage because of course, DC loves the holidays.

I am glad he does and watching his excitement does help me get more in the spirit of things (that and watching too many Hallmark Christmas movies).

He is excited, so I am excited for him.

A few years ago we decided to move our then regularly scheduled, first week of January vacation to the week of Christmas just to avoid all of the holiday hoopla.

Did we choose a “Christmassy” destination like those found in the Hallmark movies?

No.

We chose Disney because nothing else could take the confusion out of or help soften the blow of a “different” Christmas than another trip to Disney.

I was still worried that this would not be Christmas in DC’s eyes because Florida is really not the place that comes to mind when one thinks Christmas.

And then I worried about the gifts…

From 2014:

The Christmas Vacation Dilemma

A few days before Christmas, I read a post from another favorite blogger of mine, Mother O’ Jim, titled “When Delaying is Enhancing…” . The blog was about her son’s Christmas anxiety over a gift he knew he was going to receive (give it a read if you have a minute) and the steps taken to minimize his anxiety.

While I was reading this post I was thinking about DC. Although he does get very excited and anxious around Christmas-time, reminding me many times everyday that “Christmas is coming soon” – he does not seem to get as anxious as Jim from the blog.

I was a little bit concerned about this Christmas though. Everything about this holiday season seemed to be different. Thanksgiving is normally spent at a restaurant (the same restaurant) with DC, Doug, my brother and sister-in-law and at times, my niece. This year, my niece had moved out of state a few months earlier and Doug was away on a cruise with his sister and his father. The restaurant even seemed to be different, more crowded and much less organized.

DC’s Dad decided to go to Florida for an undetermined amount of time. He left in mid-November. He would not be here around Christmas for DC and for the first time ever, we decided to take our vacation a few weeks earlier than usual and were scheduled to leave Christmas morning. We had to leave the house by 8:30 in the morning.

DC does understand that now that he is an adult, Santa only brings his stocking. The rest of the gifts are from me (Mom). But, would he understand when he woke up on Christmas morning to only a stocking, even if he received the same big pile of gifts the night before? I explained this to him over and over again and he said he understood. This NEVER means that he really understands.

After reading the blog I spoke of earlier, I got a little bit more anxious about it. Jim was happy to get his gift early as would DC, but I know in his head, this would not – even if he agreed that it would – eliminate the expectation of the Christmas morning pile of gifts. I know this from the many, many times I have given him choices to do “this” or have “this” now instead of later or instead of doing or having something different. He agrees but then still expects whatever he traded away.

I realized that I would have to do more than explain it to him over and over again. I thought about showing him pictures, but then I realized that it would make more sense to him and he would not think he’s missing out if he saw the same pile of gifts just being given at a different time.

So I took a photo of our tree and another of the bookcase where Santa usually leaves his stocking and I usually leave his surprise gifts. Then I cut out photos of presents that I could move from one place to the other so he could see that he would be getting the same amount of gifts, just earlier than usual.

(These photos are not of our tree. The originals were terrible. It seems that every time I need to print – the ink just about gone)

Normally after opening gifts at my mother’s, we come home and DC opens the gifts that are already under the tree. There is usually only a few because he knows he’ll be receiving Mom’s hidden gifts in the morning with his stocking from Santa.

normalxmaseve

Gifts from Mom on Christmas Eve

More gifts from Mom and Stocking from Santa on Christmas morning

normalxmasday

More Gifts From Mom and a Stocking from Santa

I had him move the gifts himself, from Christmas morning to Christmas Eve.

vacaxmaseve

Christmas Eve – ALL of Mom’s Gifts

So…..Christmas morning would be just Santa.

vacaxmasday

(Santa would surprise him with another stocking at the hotel when we arrived, but he was not aware of this yet)

We did this every day until I was as sure as I could be that he understood that he was getting the same amount of gifts… just earlier.

Still I was a little bit nervous about Christmas morning….

He was up very early as usual – this was fine since we had to leave early.
He saw the stocking filled with everything he’d asked Santa for. He was happy, maybe not as excited as he usually is, but he wasn’t disappointed – that had been my biggest concern.

There was enough time to use and play with everything in the stocking and enough time to watch the entire Peter Pan Live DVD he’d asked for.
He never made it through the 3 hour version when it was live on TV, but without commercials, it was only an hour and a half!
I am still not a fan….but this time around, DC really enjoyed it.

As DC would say, “Phew, I was very nervous about this!”

Fortunately, it worked out well and he had a Merry Christmas!

As for me, I am still in search of that Hallmark-like Christmas Town and that 3 foot silver tree remains a dream.

*****

This is a Finish the Sentence Friday post:

Finish the Sentence Friday is a link-up where writers and bloggers come together to share their themselves with a particular sentence. This week’s prompt – “The holiday season is coming, and…”

Visit the link at Finding Ninee to read more FTSF posts.

Envelopes, Bags, Shredding and Communication

 

Last weekend was one of those weekends where DC was just all over me, all of the time. I could not make a move without hearing “Mom! Come here please.” or “Vickie, where are you going?”.

Every step I took, he was calling me, most of the time for no reason at all.

I was upstairs plunging the bathroom sink. I really do not know what the deal is with that sink, but I seem to spend a lot of time plunging it. DC had already checked in to see what I was doing more than once and had gone back to his computer. I had already been up and down the stairs a good 6 times because he always waits until I get to where I am going before he asks me to “Come here, please” so I decided that I would call him for a change.

We had just been grocery shopping and I left the bag that held the drain-o on the kitchen table.

For someone who was so concerned about where I was all day long, it took me six (very loud) tries to get him to answer me.

“DC, please bring me the white bag that’s on the kitchen table.”

He came to the bottom of the stairs with a shipping envelope.

I would understand the confusion if I had asked him for an envelope from the table. The table holds, I can’t even tell you how many envelopes and other papers that I think maybe I need to keep, or that I have to find a spot for, or mail that I don’t really have to keep but has to be shredded or junk mail that has to be shredded before throwing away (Chase, Capital One and AARP – I’m talking to you!). Getting rid of all of it would mean that I would have to empty the shredder – so there it all sits.

(You will be happy to know that I did get rid of about 50% of the envelopes and paper this week while watching an episode of Star Trek Discovery on the computer in the kitchen. All of the shred-able items went into the sink to be mashed up into clumps and thrown away while the shredder sits there, still full… Oh, the lengths I will go not to have to empty the shredder.)

He knows what a bag is, but for some reason the request threw him off. I asked again for the white bag that was on the table. After the second request he brought me the bag, but now I had to worry about what he did with the shipping envelope because it contained part of his Halloween costume.

When I got back downstairs I asked him where he put the envelope. He pointed upstairs – which is where he brought the bag when I asked for it. I tried to explain:

“DC, before you brought me the bag, you had an envelope in your hand. Where did you put it when you came back to get the bag?”

He just began pointing to random places. Places in the living room, in the kitchen, outside, and upstairs.

I even tried to re-enact the whole thing by getting an envelope, bringing it to the bottom of the stairs and saying “No DC, I need the bag on the table” going back to the kitchen and asking “Where did you put the envelope that you had?”

He just could not understand what I wanted.

I did not want to give up because at this point I wanted him to understand the question.

As we were going through the reenactment, I noticed that the envelope was in a box, which was probably right where he found it originally, but I did not let on that I saw it. So I went through the whole thing again, this time pointing to the table where it clearly wasn’t, asking “Did you put the envelope here?”

DC: “No”

Pointing to the empty chair – “Did you put it here?”

DC: “No”

Pointing to the box, where I had spotted it – “Did you put it here?”

DC: “Yes”

“There it is! Thank you for telling me where you put it.”

He was glad that we found it and was no longer anxious about what I was asking for and I hoped that after all of the looking, reenacting, and explaining he finally understood what I had been asking him.

But this, right here is my point. This is why I write these stories. Some may be written with humor and some may come across as “Oh, look at the cute thing DC did or said” (he does crack me up at times) but my object is always to make people understand how his mind works.

He has speech – yes. He can communicate – yes. But communication is difficult, he cannot always tell me anything other than his standard scripted answers. He cannot always follow directions. He might understand something one day but the next day he just cannot get it.

A simple question about where he put something took a good half hour to get him to understand. I am not positive that in the end he actually DID understand but we had to play it out all the way so he was not anxious about it anymore. He had to be the one to say “yes, it was there” or he would not feel better about it.

This is DC.

This is how he communicates or at times does not communicate. This is how he follows directions and at times cannot follow directions. This is how he processes questions and sometimes cannot process questions. This is how he processes information and sometimes just cannot process information.

Because he gives standard answers, people do not always realize right away that he is not giving the correct answer to their question. People who know that he may just be giving a standard scripted answer may not realize it when he DOES understand the question and gives the correct reply.  Other people he meets along the way in life are not going to take the time to reenact the whole scenario to get to the answer to that question. It is a constant struggle for him and for me, but we do not give up.

I know at 26 years of age there is not a lot of progress that will be made. I know that we will never get to a point where I don’t fear the future when he no longer has me to help him,  but we do not stop trying. There is always a little bit of progress made – there is always something…..

 

****

I AM absolutely aware that this post is just all over the place but sometimes that’s just how our life is – all over the place.

 

 

 

 

 

Can you say that again? I missed it the first 40 times.

Knowing full well what I was in for, I took away DC’s computer privileges on Sunday evening for reasons that are not necessary for this story.

He is only allowed to use his computer on the weekends. This rule stemmed from the original rule of watching his DVD’s on weekends only. As he now uses his computer to watch his DVD’s,  the rule was amended to include his laptop. He has an iPad and is allowed to use it daily, which he does. I have not had to make a weekend rule about iPad use… yet. I did, however have to put limits on it.

What is the difference, you might wonder? Watching his DVD’s becomes an obsession to the point where he does not want to do anything else. While on the computer he can have the same scene playing on DVD, Netflix and on YouTube on three different screens and alternate rewinding that scene between the 3 screens. It is rewind heaven! Because he cannot use his DVD’s with it, he has not reached that level of movie watching…err rewinding in multiple windows on the iPad.

Losing his computer on Sunday night meant he would not have the opportunity to use it again until Friday, IF the behavior did not continue.

And so it began…

“Mom, use it on Friday.”

“Mom, I promise never to do it again. I’m sorry! Computer on Friday?”

“Mom, I behaving.

(Repeat, with some variation 122 times)

I explained that we would have to see what happens during the week before I tell him he could have it back on Friday.

Monday morning:

“Mom! I was a good sleeper. Computer on Friday?

Mom! I behave! Yaaayyyyyyyy!”

(Repeat 26 times before breakfast) 

Finally, and with a great deal of apprehension because it was Monday and Monday’s have not been DC’s favorite day, by any means , I told him that we were not going to talk about this any more and if he kept asking, he would certainly not get his computer back on Friday.

With that, DC went upstairs and I waited for the fallout.

Instead, he seemed to take that time to think about it because I heard him reciting a line from one of his Disney shows; “If you live in my house, you have to follow my rules”. This also made me believe that he was actually understanding that he did not follow the rules and I was not just a “Mean Mom”.

It seemed as if we had turned a corner.

I did not hear about it again the rest of the morning.

When he called me in the afternoon to tell me that his transport had arrived and he was “going home nowwww”, there was no mention of “Computer Friday”.
Wow! He got over this one rather quickly.

Yay, me!

He called me again when he arrived home as always. Usually this call as well as the earlier call are scripted; he rarely goes off script – he tells me he is home and tells me what he and his aide are planning to do.

He not only went off script but he went off script rather loudly.

COMPUTER ON FRIDAY!!!!

Me: We’ll see what happens this week.

“Computer on Friday” continued after I got home from work.

Now really what I should have done was taken his computer away on Sunday for the original infraction and if the behavior continued, take it away again for Friday, because we all know that “Maybe” is not a word and “We’ll see”, if it means anything to him, probably leans more towards a “yes” than a “no”. But I was all in now, so I could not back down and change my mind.
(Please understand that even if I had told him at the beginning that he could have his computer back on Friday, all of this would still be happening as he would feel the need to verify that fact; over and over again.)

After answering the same question more than once and reminding him that we were not talking about this now, he decided to change his strategy…

“Mom, Going to Dad’s on Friday and use Dad’s computer?”

Sigh….

Me: No. when you lose your computer privileges, you lose them everywhere.

(Repeat this conversation 5 times)

In my infinite wisdom I thought that if I gave him a specific date and put it on the calendar, I might get a break from the continuous questions.
I marked Thursday on the calendar and told him that I would let him know about “Computer Friday” on Thursday.

“Mom! Come here!” (calling me to the calendar and pointing)

“Thursday to use computer on Friday!”

“Mom will tell me on Thursday. Use computer on Friday.”

“Mom! I am a good <insert eater, sleeper, dresser …..> Thursday to use computer on Friday.”

(Repeat 3,946 times)

You knew that was coming…….

Revisiting “Feeling Chastised”

The following was written a few years back. It was written more about the discourse  within the autism community and not about autism awareness or acceptance. In actuality, I suppose it could be looked at as a piece supporting  the awareness, acceptance and respecting the differences in the ways parents view autism. There is far too much hostility.

I am re-posting now, in this, the month of April. With all of the added awareness and supposed acceptance that has taken place over the last few years, really not too much has changed in this, our little corner of the world, or in my friend’s corner of the world. Not very much at all.

If anything; things have become more difficult….

Dear Abby – Feeling Chastised in New England

Let's all celebrate

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…….

2016 Top 5 Posts, #1 – “Mom, do you love meeee?”

I am happy that the following came in at Number 1 in 2016; it is one of my favorites.

We still have the same conversations and he still says it exactly same way. I will surely never correct him and I hope that no one else will either…..

“Mom, do you love meeee?”

I love you Magly

From the time that I was old enough to think about it, I always promised myself that if I were ever to have children that there would never be a second in their lives that they would not know that they are loved. This would never be something that they would have to wonder about – not for a single moment…

I think I have lived up to that promise to myself.

DC can and does tell me that he loves me many times a day – complete with and accompanied by the “I love you sign”. I know that he understands in his own way, what that means. This is not to say that I believe it is always all about me. Much of the time it is, but there are times when he just needs to have something to say. It is kind of a comfort thing for him. He says it over and over again when he is in an uncomfortable situation or a place that is new to him.

But, back to me….

I especially love it when he, at 25 reverts back to “I love you Mommy” instead of Mom, Mother or Vickie.  He is probably one of the most lovable people around and I am willing to take complete credit for that.

Is it just learned behavior and not real emotion?

Is it comparable to the times that I have to make a rule because I know he does not understand something?

Is he just, in his mind, following another rule?

Is he just going through the motions because that is what he thinks he should be doing or how he should be acting?

I used to wonder about that when he was younger but now I am convinced that although I am sure that some of that lovability was originally something that he learned, it IS also very full of emotion.

All of the above does not mean that he does not hear his fair share of yelling because let’s face it, every behavior can not be blamed on his autism.

When these situations arise and he is “in trouble” and after I start finding his apology notes everywhere – we always sit down and have a talk.

“No matter how upset Mom might get when you do something you are not supposed to… I always love you. When you are in trouble, I always love you. You never ever have to worry about that.”

When he is “in trouble” and we have not had the talk in what he thinks is a timely manner, he will come to me and say “Always ‘loves’ you.” He knows it, but he needs to have the talk. It’s a ritual and it is comforting to him.

DC’s ongoing “I Love you” campaign has evolved recently. While all of the above still holds true, he has added, ” Mom, do you love me?” (in his high pitched squeaky voice with the emphasis on the “me”).  I know he is not questioning the fact. I know he knows this and I know that he just wants to hear it again. I also know that this line must be something he picked up from a book or a movie because he is using the correct pronouns.

Just to change it up a bit, my response to this question is: “I love you madly”.

Just to change it up a bit more, I will ask: “DC, do you love me?”

His response is another in the long list of words/phrases that he uses that I know I should correct speech-wise, but I do not because I love the way he says them. I hope that this response never changes.

Mom, I love you ‘Magly’.

No corrections necessary……….

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….

Branches, Branches, everywhere..

DC fell asleep on the couch last night. I happened to notice a scrape on his elbow. I went over to check to see if it was actually a scrape and accidentally woke him from a dead sleep. I apologized and told him that I was just looking at the scrape he had on his arm. In his half-asleep/half-awake fog, he felt for it. I asked him what had happened –

and even in this not fully awake –  really mostly asleep state; his answer was the same as it always is. Already drifting back to sleep,  he  whispered,  “Tree Branch”.

From earlier this year:

Those pesky tree branches…

tree branch

I know that I have written more than once about DC’s inability to communicate to me or anyone else if/when something might be  wrong. There have been very few times that he has actually volunteered information to me when he was not feeling well or when something hurt or was bothering him.

Most of the times when he does communicate a problem to me, it is really just a ploy to cover himself in Band-Aids:

DC: “Mom, my leg is killing me.” (there was nothing wrong with his leg, I checked)

Me: “What happened to your leg?”

DC:”I broke my leg.”

Me: “How did you break your leg?”

DC: “Tree branch. Ouch!” (we are in the house)…

The lengths that he will go, to plaster himself in Band-Aids.

A tree branch seems to be the number one culprit in many of his injuries. This leads me to believe that at one time or another a tree branch was indeed the reason for an injury. When? I have no idea, but once he comes up with an answer he likes, it usually becomes one of his standard answers.

More often than not the answer I get is Nothing ‘wong’ or Nothing happened. Although DC almost never really gets cuts or scrapes – which I assume is the reason for his obsession with Band-Aids and really is not what I’d call accident prone, he does always seem to have an odd mark or “spot” somewhere or another. These “spot” mysteries oftentimes take a good amount of time for me to figure out. He is not always a big help in that area.

There was the one time that he came home from his senior class picnic with a red mark (scrape, but not really band-aide worthy) on his arm. When I asked him what happened, he told me that his IA (Para, to some of you) Mrs. G. pushed him into a bush and he fell down. Now, if I were a more paranoid person (hahaha, who am I kidding, we all know I am) I would have believed this because He Was Actually Telling Me Something, but I have known Mrs. G for years so his explanation did not hold water. Of course I did not tell him that I didn’t believe his story because: 1. He actually told me something and I didn’t want to discourage him from doing so in the future and 2. I assumed that he probably really did fall into a bush and Mrs. G was there to help him out. ~ It’s all in the translation. I spoke with Mrs. G the next day and yes, my version was correct.

Or the time that I noticed a large quarter sized mark on the side of his leg/hip one morning before camp. I could not for the life of me figure out what happened. He was offering no information at all. I asked the camp nurse to take a look at it. She did not think it was any kind of bug bite (I am always concerned about bug/tick bites when he is at camp). I asked DC again what happened he just kept saying “swing”

“Did you fall off of the swing?”

No, swing.

“Did you get stuck on something on the swing?”

No! Swing (he was beginning to get upset – so I had to stop because if I ask too many questions he thinks he is getting it wrong and changes his story).

After thinking about it for quite some time, I realized that he was actually telling me what happened. It was the swing. DC loves the swings at camp. He will spend any free time and all of the outdoor rec. portion of his time on the swings. He is a big boy. The swing was rubbing against his hip every day, causing something that resembled a very large healed-over blister. Once I figured it out, we just kept it covered with Band-Aids, so as not to cause so much friction. This was one of the very few times where Band-Aids were applied for a legitimate reason .

Then there was the big stripe down the side of his neck, which is a regular occurrence now, but the first time I noticed this mark, it scared the life out of me.

“Oh My God! What happened?”

“Tree branch”

He was in the car with me all day. He did not come in contact with a tree branch. Once again, it took me a while to figure this one out. When we are driving he rocks back and forth in his seat with so much force that it shakes the whole car (very distracting to the person driving). Because we had been driving so long, the seat belt was rubbing against his neck with every rock for a good long time, causing this large red stripe down the side of his neck. I do not think he even felt it. I have always believed that he does not feel pain the way we do or he does not process pain the way we do.  This and the fact that he is not always able to communicate what might be going on is and will always be a huge worry of mine. Verbal does not always mean communication.

Last week, I noticed a mark on the back of his leg. I asked him what happened. “Nothing happened”

He hates for me to look at these things because he is afraid that he will have to go to the doctor. After a lot of back and forth and ‘egg – guo – ing’ he let me put some anti-bacterial cream on it and he went on his way. He brought it up again the following day on his own as his way of apologizing for giving me a hard time the day before. “Feels much better now, Mom! Thank you! Thank you!”.

I asked him again what happened and he rattled off a list. I am sure the answer may be in there somewhere if I think about it long enough – and then again, maybe not… one never knows.

“The swing” (which would have made perfect sense as it looked similar to the swing injury –  if he had been on a swing.)

“A rock”

“A spindle – ouch” (my personal favorite)

‘The chair”

“Tree Branch”

So…..

Sometimes I do get the answer I am looking for albeit in a round-about way,

and other times…..

I am just left with a tree branch..