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……….

We are all very different

Below is a comment I made recently on another blogger’s post (See: I can’t let it go). Due to the long-windedness of it, one might assume it was in opposition to what was written. Believe it or not, it was not. I did agree with much of the author’s points and began my comment by saying just that. It just so happened that this was the time and this was the post that I randomly chose to get it all out of my system. Apparently I did not accomplish my mission to get it all out, because writing it in a comment did not keep the subject from gnawing at me so I am copying most of it here and adding the things I have already said said over and over again after the comment.

“I have done my share of complaining *on my blog* but the complaining is never directed at my son, it is directed at the people who do not understand my child or the people/professionals who should know better. I do not go into detail about melt-downs or behaviors and I certainly share and celebrate all of his accomplishments.

I do not mourn my child.

I do not mourn my life.

The only thing that I mourn or worry continuously about is his life after I am gone. He cannot live on his own. He cannot take care of himself. He does not understand danger. He does not understand when/if someone is taking advantage of him. He has no siblings *so there is no one that I can count on to take care of him after all of the adults that have been appointed are gone*. He is verbal but communication is *difficult* so he cannot communicate when something is wrong.

Even though I have taken all of the steps that I can to make sure that as much as possible is in place for him when that time comes, he will, I am sure have to live in a group home when I am gone and that terrifies me. He will be at the mercy of strangers.

I want him to be as happy as he is right now for the rest of his life. I do not want to think about him being abused, hurt or treated poorly. I do not want to think about him not having his beloved books, markers, band aids, dolls or computer. I do not want to think about him not understanding why – *if  any of the above concerns come to be*, this treatment is happening to him.

This is why I write about him. This is why I tell stories about him so that maybe people will understand how his mind works and understand that not all autistic individuals are the same. This is all that I can think of – every . day . of . my . life. I love my child more than I could ever have imagined that I could love anyone and I live in terror of what will happen to him when I am not there to protect him.

This is not about my life, it’s about his – his future. 

*Maybe other parents who have more than one child do not worry about the “later” as much as I do because they know their child will be taken care of, but this is my reality.*

Although I do not agree with some of the blogs, articles and videos out there, at all. I do think we need to shine a light on the fact that everyone is not the same. Maybe not in the way it has been done recently and not in the words that were used – but we do need to see every side. We don’t need to share every detail – I don’t but I understand that some people do. It is sad that all of this is causing so much upheaval in the *autism community* – there has been enough of that already.

 

 

This is not to say that I don’t have hope. I always have hope. DC, even at this age continues to make progress – little things and small steps, but it is there. I hope that I will be able to find someone his age that is willing, not to take him in but to be there to see that he is being treated the way I want him to be treated, to see that he has the things that he needs and wants, to see that he gets the proper medical attention, to see that he is able to go places and participate in the activities that he loves.  This is where my hope lies.

I had a coworker who after listening to a now ex-coworker complain about having kids, having to work and the fact that no one understood her situation, said “Are you kidding me? Vickie has given up her whole life for her son”. I suppose that was meant to be a compliment, but no; I have not given up my life and it is sad that some people might see it that way. He is my life. I do not feel as though I have given up anything. Sure there are times when I would like to leave the house without having to find someone to watch him, or go to the store without waiting for him to go though his entire ritual before we can leave – where I could have been there and back by the time all of that happens. I would like to not have to worry so much about him when he is not right there with me. This is not giving up my life. I am sure I complain at times; as anyone might complain about their children once in a while.  This is my life. I do not feel as though I am missing out on anything.

DC is happy. That is apparent to everyone who meets him or knows him. He has his days, but doesn’t everyone? He is happy. He is healthy. He loves his life. I know this.

I tell stories, sometimes with humor; sometimes not. I tell stories because if I were to try to explain autism – his autism to anyone, I would be talking for hours and still never be able to give a true picture.

I tell stories to show you how his mind works. I tell stories to show that even when your child hits adulthood (he is 26), you could be going along on your journey and BAM, seizures start at 24 – or BAM, new or old behaviors crop up.

I tell stories because NO ONE is the same.

Everyone’s life is different. Every child is different.

I wrote a piece a while back about death. I wrote about the death of my stepfather because I was not and really am not sure that DC understands death.  I had someone comment that her son is autistic and she was there to tell me that DC absolutely does understand.

No! It does not work that way.

Everyone is different.

I wrote a piece about whether or not DC understands that he has autism (we talk about it because I never want him to think it is a bad thing) and I got a comment saying “I am autistic and believe me, he understands”.

No! It does not work that way.

Everyone is different and unless you know my child and have spent a lot of time with him, you can not tell me what he does or doesn’t understand.

I wrote a piece about all of these worries before, the comment: “I am autistic and I can live on my own – he will be fine”

No! It does not work that way.

Everyone is different.

I guess this has been my point all along. Everyone is different. We need to see that instead of bunching everyone under the same umbrella.

We may not agree with the videos and posts that have been out there recently and I agree that no one should be made to feel as though they are a burden, these people are talking about their children, not autism in general. They are trying to show the side we do not normally see. I do not agree with a lot of it but I do not think that they are trying to demonize autism. They are talking about their life and only their life and oftentimes are posting these items during some very raw moments.

Let’s face it; we all can feel sorry for ourselves once in a while. It happens to all of us. Maybe when we see or read something like this we should not begin with bashing. Maybe we can try to look deeper and maybe even have a discussion. No one will ever be able to see a different perspective when we begin with hostility.

Everyone is not the same.

*****

*Added to the comment for further clarification here

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.

 

 

 

 

 

 

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…….

A chair is still a chair.

I remember there was a point when DC was much younger that I realized that because of his autism I was coddling him a bit and doing things for him that he was really able to learn to do himself.

I did understand that he had to be taught just about everything and was not going to just learn things the way other children did.

One of the extreme examples I used (and still do use at times) to explain this to others was/is:

He might understand that this is a chair because I taught him that it is:

That does not mean that he understands that this is also a chair…

He did not just pick up knowledge, he had to be taught just about everything.

 

One day I realized, after asking him to put something on the counter, that he did not know what the counter was. It was there. He saw it every day, but it did not have a name. The sink did not have a name, neither did the refrigerator or the microwave. He used the counter and the sink every day, but he did not have a word for them. When I told him to wash his hands, I may not have called the place where he washed his hands the sink each time. When I told him to get his cup, he knew where his cup was but again, I may not have said “from the counter” every single time. He knew where to wash his hands and get his cup so the thing he was concentrating on was washing his hands or getting his cup, not on the other words in the sentence.  I did not TEACH him the words and he was not going to just pick it up from the conversation.

A bit of a rude awakening for me….

As much as I thought I was teaching him all day, every day and naming things all day, every day, because I did quite a lot of things for him, specifically in the cleaning up after one’s self department,  I missed all this.

Of course, we began right there and then to go through the entire kitchen.

When he went to his Dad’s I asked him to do the same because again, just because it is a counter or a sink in my house does not mean he will know it is a counter or a sink elsewhere.

Flash forward to a few weeks ago when DC had an appointment with his neurologist. He does not happen to like this doctor at all and as little as we have to do when we go there (weight, blood pressure and questions), he gets anxious beforehand.

To help alleviate his anxiety, we were going to the diner with the giant pancakes because we went there the morning of his last appointment and as we all know, if we do something once, it IS tradition.

I had only been to this particular place once and we were with my mother at the time (but…. Tradition) so I was not sure of what side street to turn off the main road we were on.

I looked up the address and asked DC, who loves to help direct me to where we are going by saying “Left” “Right” “Turn” or “Ooops, we took a wrong turn” when I miss it – to look for ‘Fairway Street’.

Now I know he knows what signs are – he reads quite a few of them, but I realized that even after all of the practicing we have done for what to do if he got lost (to call either me or 911 and read the signs around him – the signs being ANY signs – Stores, Road, ANYTHING that could tell me where he was) he did not know specifically what a street sign was.

Me being me, now convinced that I am just a complete failure HAD to teach him right then and there! He had to learn the difference between street signs and other signs and he had to learn it right away.

I started pointing at every street sign we saw. “What does that say?”.

DC who just can not almost ever, follow where anyone is pointing, was looking in every direction but where the sign was. I realized that I had stopped dead in the middle of the road while trying to make him see the sign, so I continued on without him ever finding the sign I was pointing at.

Now the pointing thing has always been an issue. He just cannot seem to follow a pointing finger to whatever anyone might be pointing at (except if he is the one pointing something out, like a bookstore). Every once in a while he will get it but when that happens I suspect that he has already spotted what I am pointing at. I have tried hand over hand pointing. I have tried just pointing with his hand. I have tried putting my hand right up against his face so he can follow my finger and many other things over the years. Pointing out something to him is always just hit or miss.

I tried again at the next street sign; stopping in the road and getting frustrated that he could not spot the sign I was pointing at before I had to go to let the traffic behind me continue on. I did this a few more times before we got to the diner. I was frustrated and he was getting very frustrated.

There was a street sign across the street so I had him read that one and explained that it was the name of that street. If there were two signs, it meant one was the name of the side street and the other was the name of the street we were on.

I knew that it was all too much information but I could not let it go.

We did this all the way home.  It was hard because some signs were on telephone poles and others on metal poles. Some had more than one sign, like the one at the diner, and it was really difficult trying to explain all of this while driving.

Level of frustration: HIGH (for both of us)

He was finally able to pick out a couple though; mostly in places where there was not much traffic and I could stop without worrying about rushing him.

Moving on,  I asked him the name of the street we live on…. Even though he knows his address, he did not know the answer to that question. I do not think that he understood that an address IS the name of the street. Maybe if we lived on Blank Street, it would have clicked with him earlier on, but we live on Blank Road and our last address was Blank Ave.

Unfortunately, there are not a lot of street signs in our neighborhood to point out when I walk him around, but I have been pointing them out where ever I see them.

My next step is to try using google street view so he can take as long as he needs to find the signs without people beeping and swearing at me in traffic.

I am sure they can come up with plenty of other reasons to beep and swear at me on the road….

Much like it taking 3 years of Special Olympics swimming to realize that he did not know that he could open his eyes with the goggles on, I am wondering how the heck I missed this.

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…….

Autism; In “The Old Days” – Diagnosis via St. Elsewhere

img_8084

As you may or may not know, DC is 25 (almost 26 – gulp) years old. He was finally and officially diagnosed with Autism when he was 5.

I knew there was “something” by the time he was a year old and looking back, probably before that.

I originally thought that he could not hear.

After many visits to many doctors any many different hearing tests, they determined that he in fact, could hear perfectly.

This and a whole list of other issues, still had me believing that there was “something” –  they were telling me that he could hear– okay, but there was still something.

He was not talking or attempting to communicate, but doctor after doctor told me that boys develop more slowly and not to worry.

I was worried.

By the time he was three there was still no attempt at speech, there was flapping, stimming (although we did not call it that back then) and no eye contact. There were meltdowns (we did not have that word back then either) and as I said, a whole list of other issues that doctors continued to tell me he would grow out of.  I began to feel as if this was all in my head but I finally had him evaluated by Easter Seals and Early Intervention.

Both agencies agreed that there was a “speech delay” and we began to receive weekly home visits through Early Intervention for speech and OT. Although his Early Intervention therapists said that there was “something that they could not put their finger on”, his official diagnosis remained a speech delay.

They told me that because he was an only child, it would benefit him to be around children his own age.  Being a single parent since he was 2, not working was not an option, so at the time, he was with his Godmother’s mother during the day when I was at work.

Following the doctor’s and therapist’s advice, I took him out of the home daycare and placed him in a local daycare a few days a week. The rest of the week he with my friend who not only had a daughter exactly his age but another daughter a few years younger. Activities for special needs children were non-existent at that time, so I found a gymnastics class (he loved to climb) but I decided to put him in the class for children 18 months old, half his age because even though everyone was calling this a speech delay, I knew it was more than that and I knew he would not be able to handle a class made up of his peers.

Well…. That was a disaster! I spent most of the time in a corner crying. He just could not stand to be around the other kids, and most of the time I had to take him away from the situation and bring him over to a corner, nullifying the whole socialization effort.

At the end of each class was “circle-time” – we tried, we really did. He would sit on my lap and scream and scream; he would try to wiggle away. I would chase him and bring him back while trying to ignore the stares from the other mothers.

Then there was “Blaine” and his mother…

It has been 22 years, but I will not forget Blaine and I certainly will never forget his mother. His mother who sat next to us on the floor consoling Blaine loudly as if he was being traumatized by my child’s crying. Let me just say that Blaine was fine, he was really not even paying attention to DC at all, but she continued on and on “Don’t worry, it’s okay. He won’t hurt you” all for my benefit not her son’s.

We did try again the following two weeks with the same result, the third time we just ended up picking up and leaving mid-class. That was my last visit, but I did send his Dad with him the next week just to prove a point that he was not understanding at the time – I will get to that shortly.

A few days after our last disastrous trip to gymnastics, I was giving DC a bath. As he was sitting in the bathtub, I looked at him and he looked as if he did not even know I was there. He looked as if he was having a conversation in his own language with someone that only he could see.

It was right then and there that it hit me! He reminded me of Tommy Westphall, an autistic boy – a character from the old television show, St. Elsewhere. At that point, the show had been off the air for a good five years, but I still remembered the character vividly.

I knew nothing about autism except that Tommy had it. I had never met an autistic person and other than the way Tommy behaved, I knew nothing about it – frankly I cannot even say for sure if I had ever heard of it until then. I know it sounds ridiculous but it was at that moment that the proverbial light bulb went off in my head.

I called his Dad right away, but he was not hearing any of it. In his defense, he really did not see the delays – he really had no experience with children this age and nothing to compare DC to. His was in the military for many years; the years when his nieces and nephews were young. He was never really around young children at any time in his life for any length of time.

I decided that we would change his day with DC that week from Sunday to Saturday so he could take him to that dreaded gymnastics class. All of the talking and explaining in the world was not going to change his mind until he saw the differences first-hand.

He saw them.

He got it.

I will never forget the expression on his face when he brought DC home that day.

I had already called DC’s doctor with the suggestion of autism and she made appointments for him to be evaluated at a Children’s Hospital that was supposed to be very prominent in the diagnosis and study of autism. I did take note of the fact that she did not seem surprised that I was thinking and bringing up autism.

In the meantime, his Dad happened to come across a local news story. The Anchor of one of the local news stations did a story about his own son being diagnosed with Asperger’s. He called the station and requested a copy of the tape and yes, there were quite a few similarities between his son and DC.

Long story, short (too late, I know) – we went through the whole evaluation process and they gave us a diagnosis of:

“Severe speech delay – Rule out Autism”.

What might that mean?

It was explained to us that “Severe speech delays tend to mimic the classic symptoms of autism” including the flapping, lack of eye contact, food and texture aversions and of course the lack of speech itself.

??????

If his speech is just delayed and he should begin to speak, the other symptoms would disappear. They wanted to wait another year to see if he would begin speaking and “rule out autism”.

Fortunately, by this time I already had him in Special Education. He qualified, having previously been diagnosed with a delay, so all of this time was not being wasted, but it would have been beneficial to be able to work with an actual diagnosis. (School-Age for SPED in this area is 3 to 21 years of age)

We returned the following year and he was finally officially diagnosed.

It took more than 4 years since I first thought there was a problem – 4 years of doctors looking at me as if it I was just an over protective, first-time mother – 4 years of people telling me that Albert Einstein did not speak until he was four – 4 years of people telling me that he did not speak because I did everything for him and he did not need to speak for himself – 4 years of the looks, stares and comments from people like Blaine’s mother – 4 years of taking him to doctor after doctor (this is not to say that all of the above does not happen still, because it does, but at the time – not having a diagnosis – I was beginning  to believe that all of this was either all in my own head or all my fault or both) – 4 years…

I honestly do not know if his doctors and therapists back then just did not want to bring up autism, because knowing what I know now – it should have been apparent to all of them.

Apparent as it should have been, still I had to be the one to say it first….

*****

If you were a fan of St. Elsewhere, you will “get” the photo.

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……….