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.

Advertisements

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 his autism.

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.

Celebrate Autism? I can’t do that. Maybe others can, but I cannot celebrate his level of autism.

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……….

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..

 

 

 

 

 

 

 

 

 

 

“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……….

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 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..

 

 

 

 

 

 

 

 

 

 

Walk Slowly

cruise 081 (2)

We’ve had some “weather” over the past week or so. Ice and snow are not on the list of DC’s favorite things. Usually I have to walk him out to his transportation if there is even a patch of snow or ice on the sidewalk – and believe me, he does not have a problem taking me down with him (or instead of him) if he falls or even just slips a little bit.  It is drama all of the way. Watching him walk down the sidewalk the other day (it was clear enough to “do it all by myself”), reminded me of the following post from right around this time two years ago.

So, from January 2014, we have…..

Literally Speaking

Raining Cats and Dogs

Raining Cats and Dogs

Twelve years ago, I wrote this:

“You can NEVER be too specific:

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

And

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

And a few years later, this:

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

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

“Mom was so high”

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

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

tear it up

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

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

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

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

Journals

journalBelow is an article that was published in the October issue of APM. I did share the entire issue when it was first published, but was asked not to share the article itself on my blog (something to do with Google and Searches) until it appeared on their blog. Since it has not appeared on their blog so far and I still am trying to blog from my phone due to our internet issues, I thought that inserting photos rather than trying to type with one finger on my phone seems to be the easiest route to publishing a new post. I decided I would share it under a different title as not to go back on my word and confuse Google.

 

APM Pg 39

Pg 40

This story was originally posted here with the title of “What Did You Do Today?”

It was published in the October Issue of Autism Parenting Magazine – Take a minute to read the full issue.

Hope to be back on-line very soon!