Month: May 2017

Memorial Day: The Vietnam Wall and Remembering Uncle “T”

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Having grown up in the 60’s and 70’s, I was very aware of the Vietnam War. I may not have understood the politics of it, but I was acutely aware of the turmoil that was going on in the country at the time. I do remember desperately wanting to be a “hippie” so that I could protest with them. At that age, most of our views come from our parents and although I wanted to be a hippie – when we made election signs at school, all of my signs were in support of Nixon – for no other reason except that my parents supported him. It wasn’t until I listened to some of my much older cousins talk and argue with my parents, their parents and aunts and uncles at a family picnic, did my opinion change about that.

We have done some traveling over the years and the one place that I had never been and really wanted to go, was Washington, DC. The only thing I wanted to see there was the Vietnam Wall. DC’s SPED class was lucky enough to “work/volunteer” when the Traveling Wall came to town, so I knew that this could be something relate-able for him if we were to travel to D.C..

On Memorial Day Weekend in 2010, we finally made the trip to Washington D.C.

Although we saw many sights when we were there, the wall was the only thing I cared about seeing. Being Memorial Day weekend we decided not to wait until Monday to go.

My reaction to seeing it, was so much more emotional than I expected. One really cannot stand in front of this wall without some sort of emotional reaction, but I got so very emotional that I had to leave. I was not ready for that, not at all. There are no words to explain what it feels like to stand there looking at all of those names, names I did not even know. It is not something I will ever be able to explain.

Because we were only there for minutes before I fell to pieces, we did go back again Monday. I do not know what it was I wanted to do, but I needed to be there longer than a few minutes. It was just as emotional the second time, but I was glad we went back.

Just last week, my mother received word that my Uncle “T”, her brother passed away. There were no calling hours and burial was at the convenience of the immediate family.

Uncle “T” (I am told that I gave him that name when I was very young because I could not pronounce his real name) was my favorite uncle when I was little and remained so over the years even after we lost touch with him.

I happen to have a freakish memory for things that I should have been too young to remember, but I do remember.

As I wrote in another post:

I was only 3 years old when JFK was assassinated. I do remember people sitting in our kitchen while I was in the living room watching the funeral. I am not sure that I knew who he was but I did know he must have been someone very important because the people in the kitchen were so sad. I distinctly  remember looking out of our front window waiting to see the funeral procession go by – because when you are a kid, everything you see on TV is right outside your window, right?

The details of these very old memories may be a little bit out of order or possibly a combination of more than one day, that in my mind happened all at once, but I have been told that the memories are pretty accurate overall.

I remember my uncle…

He was the youngest child of 5.

I remember that he lived with us before my mother remarried (she remarried when I was 5). He baby-sat for my brother and I, often. I was closer to him than my other uncles.

I remember announcing in front of the uncle who was my Godfather, that I wanted Uncle “T” to be my Godfather.

I “think” I remember him joining the army and coming home, whether it was from boot camp or on leave, I do not know, but I was excited to see him.

I do not remember the actual wedding ceremony, but I do remember the wedding reception. I am guessing that I was 3 or 4. In-between being polka’d around in the arms of both uncles, I remember his new wife crying and crying at the reception.

I do not know if anyone knew before the crying but only days before, he had been notified that he would be shipping out.

I do believe I understood what that meant when I heard it.

I do not remember his leaving but I do remember him finally coming home.

Even at my young age, I could see he was not the same. He was not so quick with a smile as he had been. He was more sullen and kept to himself. I was young and really did not understand what an experience like that could do to a person. At that age, you understand the physical, not the mental or emotional.

He did not talk about it all that much. Maybe he did talk about it when children were not in earshot, I don’t know – but I do remember him telling one story.

He had a friend in his unit who played guitar. Every night this friend would go up on top of a hill and play. My uncle warned him and warned him every night not to go, but every night he went, until one night they heard gun fire and his guitar-playing friend was gone.

I knew he had been in the war and I knew what that meant, but being as young as I was I just did not picture him seeing death. Of course he did, probably so much more than I can imagine even now, but until that story, I did not understand that.

I know now that there was not very much help for Vets back then. I also know that my uncle probably would not be one to ask for help even if help were available.

He carried all of that, not always successfully throughout his life.

He went to Vietnam in service to his country.

He came home, alive and physically uninjured, but made the ultimate sacrifice to his country – the rest of his life. He never recovered.

His life would never be the same and that is a significant and ultimate sacrifice.

I was going to end this post by stating that many more names need to be added to that wall, when I found this:

    In Memory Day Since the war in Vietnam came to an end, there has been a growing sense among many veterans and their families that those who served in this nation’s longest war have suffered and are continuing to suffer premature deaths related to their service. These deaths have been attributed to exposure to Agent Orange, post- traumatic stress disorder, and a growing list of other causes.

    The Vietnam Veterans Memorial Fund’s In Memory Day program honors those who died as a result of the Vietnam War, but whose deaths do not fit the Department of Defense criteria for inclusion upon the Vietnam Veterans Memorial in Washington, D.C. Every year there is a ceremony to pay tribute to these men and women who sacrificed so much for their country. The ceremony is held on the third Monday in April — In Memory Day. – from The Wall USA 

This Memorial Day, while remembering the fallen – those that did not make it home, please also remember those that did… many of whom are still falling.

Autism in the Old Days: Spinning, Stimming and Eye Contact

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Back in the “Olden Days”, stimming was actually something that we (parents and the school system) worked hard to stop. We were trying to normalize (their 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 it out on my own (because…. no internet) that stimming was actually helpful to him. 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.

The idea that stimming was something to be frowned upon was so drilled into my head that even to this day, if I am not paying attention and just reacting, I still find myself, on occasion, telling him to stop.  If he gets loud, I will take him away from others to give him the chance to stim as  much as he needs to and as often as he needs to. Who cares if he is rocking in the car or flapping in public? If it helps him to calm himself and not totally lose control, I’ll take the flapping, jumping or whatever he needs to do to calm himself.

Imagine having to live with that much built up anxiety all day everyday and having people try to program you into bottling it all up with no relief or outlet.

I am in no way saying that stimming cures meltdowns, but way back then, when I did come to the realization that DC needed to stim and the stimming was helpful in “letting it all out”, his meltdowns did lessen.

His stimming and anxiety have increased over the last year or so and I do have to manage it so that others do not get smacked with the random flying hand. If it is bad enough I will take him outside. The problem now is that he is more aware of it and does not want to do it, he just cannot control himself. Taking him outside seems to put a spotlight on it for him. He does not want to be removed and he is not always ready when he asks to go back in. But there are times when he just cannot manage without hitting someone (accidentally) or breaking something (accidentally) so we have to find a space where he can stim without hurting himself or someone else. If we can get away with stimming without having to remove him, then I will let him be where he is because quite honestly, it takes him longer to get over it when he is removed. There is the added anger that he has been removed from the situation. At 26, we are still in search of that middle ground.

Back in the “Olden Days”, eye contact was one of the major things we were told that we had to fix. It was as if his intelligence was being judged and based on the amount of eye contact he was able to make. As I said in the two earlier posts, we were in very unknown territory and only had doctors and teachers to rely on, so we took what they said as gospel.

Add eye contact to the list of things that we eventually had to figure out for ourselves.

Eye contact is not the indicator of intelligence or an indication of a person’s attention. I learned that DC could and was paying attention and he did not have to make eye contact to do so. Forcing eye contact only served to make him focus on ‘Making Eye Contact’ and not on anything I was saying or teaching.

DC spins. He loves anything that spins. He watches you-tube videos of things spinning. Princesses spinning are his favorite. Back in the “Olden Days”, spinning was taboo – not allowed. Spinning things, I suppose was a form of stimming and stimming was not supposed to happen. The only other reason I can think of that we did not allow our children to spin things was the distraction to every thing else it caused. I do feel badly that so much effort was put into making him stop. But we knew what we knew and that was not much.

Now, I see these spinning toys that are all of the rage and I just have to laugh..

How times have changed (for the better), but really, had I known back then that we would be encouraging spinning…… oh, the money I could have made.

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(This post was originally part of the last installment of Autism in the Old Days, but to shorten it up, I saved stimming, spinning and eye contact portions for this post)

Even when he gets the assignment wrong, he gets it right.

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DC always has written me little notes or drawn me pictures of hearts and flowers. Some of the time it happens when he thinks he might be in trouble for something but I do also get notes and flowers occasionally for no reason at all.

Lately, any time there is a craft or project to be done at one of his activities, I can always count on him making it all about me (and no, I am not there to influence him in his decision making).

For example, off the top of my head,  last year his summer camp celebrated their 50th anniversary. While waiting for lunch to be served, all of the campers were supposed to make birthday cards for the camp. DC made a birthday card for me (it wasn’t my birthday). Fortunately, I was there for the celebration, thanked him and had him make another for the camp.

At Christmastime, at his Best Buddies party, the assignment was to write a letter to Santa.

What DC ended up with is a cross between a love letter to me and a letter written as if he were Santa with a favorite random movie line thrown in. “Always remember, it’s what’s inside that counts” is one of his favorites from “Cinderella 2: Dreams Come True”.

I am not sure if he genuinely understands what that means, but he uses it often.

Last week at his Best Buddies end of season party,  the buddies were provided with unfinished wooden frames and a photo taken of them and their Buddy or in DC’s case,  Buddies – he has 3 (only two were in the photo, though). The activity was to decorate the frame, which I imagine was supposed to be a memento of their time together, this season.

Instead, Mr. Calendar, knowing that Mother’s Day is “what’s next”, turned that activity into a Mother’s Day gift. He just can not help himself.

 

 

His Buddies thinking that he would save it until Mother’s Day, were surprised that he gave it right to me, when I came to pick him up. Apparently they are not yet aware of DC’s inability to keep a secret so I explained that even if he thought to hide it until this week, I would hear about it and would probably be shown it every day until he officially gave it to me.

The assignment was: A letter to Santa

I got a love letter from my boy.

The assignment was: Decorate a frame as a memory of your Buddies.

I got a Mother’s Day gift from my boy.

Even when he gets the assignment wrong, he gets it right and I have no problem with that at all…

Happy Mother’s Day everyone!

 

Autism in the Old Days: The Spectrum, Cures and Treatments

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(This post and it’s counterpart “Autism in the Old Days: Diagnosis via St. Elsewhere” are written strictly as a remembrance and as a comparison about how times have changed and how much in the dark we were as parents back when DC was diagnosed. It is about all of the things we did not know and how differently things are handled today. But over and above all of that it is about the slow process to the realization of not necessarily having to follow every direction laid out in front of us, just because the presenters, be it doctors, teachers or therapists,  are supposed to be the ones that knew better. Having to figure out for ourselves that the way things were presented and taught to our children and us, as parents, was not always the best way to go about things.)

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Back in the “Olden Days” (when we were all walking uphill in the snow to AND from school) when DC was diagnosed (the early 90’s) there was no internet to speak of. There was little information about autism readily available to parents. Yes, there were a few books that I’m sure every parent owned, but really not much else. We had to depend on our doctors and the school system.

One of the first books that I read was a book called “Let me hear your voice”. I remember that even though it was a book about “One family’s ‘triumph’ over autism”, it did not offer a lot of hope. Their child was diagnosed early; at one year of age. They had the resources to provide in home intensive behavior training, something that I would never be able to do.

As I mentioned in my last “Autism in the Old Days” post, DC was not officially diagnosed until he was 5, not for lack of trying, so the other theory that was in wide circulation at the time was that before the age of 3, a child’s brain could be retrained. If you missed that window, it was too late. I missed that window, again not for lack of trying.

I remember when DC was about 6 or 7, I was going on vacation – the first in years. He was going to spend the week with his Dad. I was anxious enough about that – not that I did not trust his Dad, but because I had not been away from him for longer than one of his overnight visits to his Dad’s – ever. But I also remembered that book. I remembered how the author went away on a four-day business trip and her child did not know her when she came home. I had to be talked into going by many, many people and still I really did not want to. I went and of course he knew me when I got home and all of that worry was for nothing. But this is what happens when you have to depend on little bits of information and are pretty much on your own trying to figure things out.

Back in the “Olden Days” there was the Lovaas Method. Yes, I had that book as well. Now-a-Days it is known as ABA. Again, this behavior training had not made its way into the school system and, like in “Let me hear your voice”, most folks that used this method had the resources to do this at home, 40 hours per week. I was a little bit leery about the whole thing. I thought a lot of it was harsh and really just cherry-picked a few ideas here and there from the book. (This is in no way an opinion or a judgement about ABA. I know that it has evolved over the years and is probably nothing like the original offering). It was quite a few years after DC left early intervention that the school system trained staff and designated a classroom to ABA.

Back in the “Olden Days” there was no spectrum, that we knew about anyway. Autism was Tommy Westphall, Rain Man and Bernard Rimland and his son (Autism Research Institute)  We knew about no one or nothing else.  These, our only examples of Autism, also did not offer parents much hope.

In my quest for information I remember attending a few seminars early on. One in particular given by a woman who spent many years as a Special Education teacher. A woman who I had met in a sign language class, who worked with autistic children, recommended this particular seminar and attended as well. The seminar was supposed to be about the progress that was made by many of her students over the years.  It certainly was not. I recall one man standing up and saying “You are not offering us very much hope here!” and she was not. It was all just gloom and doom, so much so that the woman who recommended it, apologized profusely to me afterwards.

That was the last seminar that I ever attended.

Now-a-days we are bombarded with “cures” and causes on a daily basis. Back then, if something hit the news, it was a big deal and please remember that we were programmed to believe that there was really no hope and that we were supposed to be looking for a cure.

In 1998 came the “Break through” in the treatment of Autism. One mother brought her son in for gastric/digestive testing. Secretin was administered as part of the test. Internet was now available but still not widely used as it is today. I don’t believe I even had email until 1998, never mind being able to figure out the rest of the internet.

“Media reports of an individual child’s dramatic improvement after a single dose of the hormone secretin administered during a gastrointestinal (GI) procedure (Beck and Beck 1998) appeared on television and the internet.” 

They were touting a cure. I did not even hear about this until I began receiving phone calls from friends, family and almost complete strangers. I have to admit that although we were still being programmed that a cure was the only thing we should be looking for, I was a little bit afraid.

I do not believe I have ever said this to anyone other than Sandy, my boss at the time, who made the mistake of asking about it and then had to listen and watch me bawl my eyes out because I felt guilty that I was afraid of this. What if it was real? How could I not have him treated? What if after he was treated and “cured”, I no longer had the same child? I felt guilty and felt selfish for even thinking those thoughts.

That being said, and I do realize that I have said it to the point where I should just make it my blog header:

My feeling of never wanting to change him has not changed, but he is older now and I worry about the future every single day.

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?”

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Even with all that DC has accomplished over the years, the bottom line is, he will never be able to live on his own without full support. He will never be able to take care of himself. He does not understand safety. He does not understand many many things. He has no siblings and will long out live all of us. He will at some point have to live in some sort of group home type environment with strangers and no one to look out for him. Dependent on strangers. At the mercy of strangers.

 

It was a confusing time for many of us. Now-a-Days, when something like that happens and we hardly blink an eye…

DC accomplished far more than I ever anticipated he would, despite the “no hope scenarios” we were offered way back then. Much of his accomplishments came when I got to the point when I stopped reading and listening to the way it is supposed to be done and did what I thought was best. We all hit that point eventually.

I had to learn on my own, to choose my battles and understand that he does not HAVE to learn to do everything that other children his age can do.

If he can not learn to ride a bike (and why the hell was that so important at one time?) then he can not learn to ride a bike. He has an adult trike and he is fine with that.

If he can not learn to tie his shoes, they sell Velcro now.

This is not to say I gave up trying to teach him things. It’s just that I let go of the things that are really not important. I let go of the mindset that he has to be like every one else a long time ago.

Because he doesn’t….

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The therapies and theories written about in this post should in no way be considered as recommendations or as proven theories.  Like today, new theories and treatments come along every day (we had much less of it due to the lack of internet) but this does not mean that any of them are tested of proven. This post is about DC and I and what was going on around us at the time regarding autism.

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Next Installment: Autism in the Old Days: Spinning and Stimming 

 

 

 

 

 

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