Look at my daughter and tell me she is not worth keeping alive #Medicaid (A Partnered Post)

We have heard (and read) about how the people who may lose Medicaid coverage from the proposed cuts, “can just go out and get a job” with an employer that provides medical coverage….

For those of us with disabled children, “getting a job” is not a solution. Many of us work and have medical coverage through our employers. Every employer does not provide the same level of coverage and the cost of medications, treatments and therapies are often far more expensive and go above and beyond what even the best health insurance policies are willing to pay.

My friend *Ally posted the following today. Her delightful daughter, *Hope has multiple physical and intellectual disabilities. She loves baseball and her “guys” (baseball players). She loves her life and lives it to the fullest. It is always a joy to see what she is up to via her mother’s posts.

She lives her life to the fullest with the help of her parents, her family, her “guys”, her doctors, medication, treatments and yes… medicaid.

Used with permission:

Medicaid: We depend on it to fill the gaps to help keep *Hope alive.

27 vials of life saving insulin.

Three month supply.

This might last us the whole 3 months if we are lucky.

Each vial retails for around $250.

Each.

Vial.

$6750 in life sustaining medication.

This is not an optional medication.

Without insulin *Hope would die.

We are very lucky that we have Medicaid and military insurance….. for now.

The proposed cuts to Medicaid affect us.

Without it, we would be unable to cover the medications she needs.

Our military medical covers 80%.

Sounds great until you realize that Hope’s medications cost around $10,000 per month.

There are many many families like ours. Good jobs, pay plenty in taxes and have decent primary insurance who would be financially devastated by the proposed Medicaid cuts.

Take a look at my daughter and tell me that *Hope isn’t worth keeping alive because she has complicated medical issues.

We are not the first family you probably think of when you hear the word Medicaid, but we depend on it to fill the gaps to help keep *Hope alive.

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For further explanation or examples about how Medicaid can be a lifeline to many families of children with disabilities, take a few minutes and watch/listen to a video or two (or three) from my friend over at Running Through Water. (also used with permission)

Vlogs are not my gig…but I keep falling behind in my writing. And I’ve been thinking about stuff… #SaveMedicaid 

 

 

How did my child’s assistance help you out today? Take two minutes to find out! 

 

 Medicaid cuts/decimation will affect everyone. Maybe even you.

 

 

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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.

Red Balloons and a Happy ‘Co-lation’

The red balloons are all over town today. The red balloons that DC loves to much….

It must be close to ‘Co-lation’ (Graduation) Day at the high school….

From June 2015:

We may never pass this way again – Happy ‘Co-lation’


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It’s that time of year when the red balloons decorate mailboxes all over town, indicating a member of that family is ‘Co-lating’ (DC-speak = Graduating) from the high school this week. Every year when I start to see these balloons, I remember DC’s ‘co-lation’ and his balloons.

DC always noticed these balloons around town and I always told him that when it was time for him to graduate, he would find balloons of his own on our mailbox. I think this was one of the big things he was looking forward to when ‘Co-lation’ came around for him.

Somewhere close to the end of the school year, among all of the other “senior-specific” notices that came home was the balloon order. We order them ahead of time, in any amount we wish. Knowing how much DC was looking forward to these balloons, I tried not to get carried away (because that is what I do) with an order of 12 – I decided to go with the norm – 3 or 4. DC’s friend *Candi had been moved up a year so that she could walk at ‘Co-lation’ with the friends she had gone to school with all of her life and move on to the transition program at the college with them. Due to the crack record-keeping skills at the High School, Candi’s mother *Coach, never received any of these senior notices including the balloon order form.

(I continued to receive a report card at the end of every semester for a full two years after DC left the high school. Yes, the transition program was part of the public school system but these report cards came complete with glowing reports from teachers he no longer had, about subjects he hadn’t taken since he left the high school. Not to worry, *Coach did receive all of the “senior” notices, including the balloon order form the following year when *Candi was also no longer at the high school.)

The delivery of said balloons took place during the school day so that the balloons were there on the mailboxes when the students arrived home. *Coach actually found one of the balloon delivery people on the road and stopped her to ask if they had even one extra that she could purchase for *Candi. The woman making the deliveries told her that due to the high winds that day, many of the balloons had popped or deflated and she barely had enough to make her deliveries.

I do not remember why I was home early from work that day, I am guessing it was for a dental appointment because I seem to spend my life at the dentist, but I came home to a bunch of deflated balloons on the mailbox. Fortunately I had a little bit of time before DC arrived home so I ran around town trying to find a few replacement balloons so there would at least be something on the mailbox when he came home. There was no way he would miss seeing all of the other balloons on his way home and if he did, there were some in perfect condition right down the street that he definitely would not miss.

Red balloons were not to be found anywhere in town and graduation balloons in any color were in short supply. I didn’t have enough time to leave town and search elsewhere, so I had to settle for two blue graduation balloons. *Coach being out on the same hunt, also had to settle for blue.

I got them home in time and he had his balloons when he got off the bus. They were blue and I told him that he received a better color because he is just that special. He was happy. His friend *Candi had the same color, of course…….. because they are both very special people.

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Just an added throwback; this song was THE Graduation and/or Prom song when I was a kid. Although it did come out right around the time of my 8th grade graduation, it wasn’t mine but it always comes to mind when I think about a graduation:

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Update: 6/20/15 – After reading this post, my friend *Coach reminded me how the rest of Graduation Day went….

My car broke down bringing DC to rehearsal in the morning (my car also broke down the morning of his middle school graduation and I had a flat tire the day of his elementary school graduation) – *Coach lost her front tooth, so she was determined to go the remainder of the day – rehearsal, the ceremony and the after party without talking or smiling. That made for great Graduation pics!

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

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

 

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 to this post)

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

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

 

(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….

*******

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.

******

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

 

 

 

 

 

The Accessories

At 24 years of age, DC started having seizures. **I worried about this when he was younger as I knew autism and seizures often go hand in hand. I had also always heard that in many cases, if your child has seizures when they are younger, they might stop when they hit puberty or if they never had seizures when they were younger, they could very well begin at puberty. I do not know how much truth there is in this but this is what I had always heard/believed, so puberty was my guideline.** (see below)

Once he hit his teen years, seizures became the last thing on my mind, so much so that when he did have his first seizure at 24, I had no idea what was happening.

After the second, he was put on medication and I knew that I was going to have to try to get him to wear a medical alert bracelet.

I was talking to a friend the other day about all of the accessories that DC has been made to wear since the seizures began and she admitted to being very surprised that he agrees to wear any of it, citing our many years of participation in Special Olympics and trying to figure out just what to do with the wrist bands that all of our kids were required to wear during tournaments. Other than the waiting, the wristbands were the biggest hurdle for most of our group.

DC has gotten better over the years about the wristbands. Not that it is still not a little bit of a battle to get him to wear one, but he tolerates it. It needs to come off the moment we leave wherever we were, that required him to wear it the band. THE MOMENT; meaning THE MOMENT. It does not matter if we are in the middle to the road, that wrist band is in my face.

This is the same guy who has no problem wearing 6 to 12 snap bracelets at one time, though.

My biggest fear with the seizures was him falling and hitting his head. He hates wearing hats. He wears them only when he absolutely has to; when it is part of the uniform. He wore a baseball cap when he played and he wears a baseball cap to work when he is working in the green house or on the grounds at his job for protection from the sun. I had to explain that the cap was part of his green house “uniform” to get him to wear it.

I bought a protective baseball cap to replace his “uniform” ball cap to provide some protection if he were to fall at work. I have to say that he has been very good about wearing it, but only at work.

Knowing that the bracelet would be a problem, I ordered some tags from If I Need Help, that have a code that can be scanned with Smart Phone or tablet. I knew I still wanted to try a medical alert bracelet because that is the first thing people look for, but I thought that these tags were a good option in case he refused to wear the bracelet.

I bought the dog tags and the shoe tags. DC also does not like to wear anything around his neck – another flashback to Special Olympics – 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 with 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.  The chain that came with the dog tags seemed strong enough to keep him from losing it, but not so strong that it would not break if it got caught in something.

He was not having any of it at first, but I explained that it was important that he wore it in case he “fell down” again (he doesn’t seem to remember the actual seizures or he just cannot communicate it to me. He says/thinks he fell down) so people would know how to call Mom. I had to keep it simple. Someone being able to call Mom, did it for him.

Now,  on to the bracelet. Since I had the tags that listed his medication (that could be easily changed at any time online), I opted not to list his meds on the bracelet. I knew that many times, the first med does not take or dosages have to be changed. I did not want him to be wearing an outdated bracelet or none at all while ordering and waiting for an updated bracelet to arrive after any med changes,  so I just listed: Autism  – Seizure Disorder – May Not Respond Properly – with his name on the back side.

And…. believe it or not; just like the glasses that I was sure he would never wear and/or would lose immediately, or the phone I thought he would never keep in his pocket and lose immediately – he proved me wrong.

He takes them off every night and the first thing he does when he gets out of the shower in the morning is put the dog tags on. After he is dressed and comes down stairs, he sits holding the bracelet and will do nothing else until I put it on (he can’t fasten it himself). There have been times when I was preoccupied with something else that I found him sitting with his breakfast in front of him, holding the bracelet, waiting instead of  eating. First things first, I suppose. There is one quirk, though. He will not  wear it with the text facing out so someone looking at his arm could read it easily. He HAS to wear it with the text facing him. There is no negotiating that point at all.

But go ahead and try to put anything else on his wrist. It still is not happening without drama.

I have written before about the fact that I do try to tell DC about his autism when the opportunity presents itself. I am not really sure that he understands but I do bring it up from time to time. Well, a few months ago, DC decided to read the text on his bracelet. I do not know if that was the first time he had read it or if it was just the first time he read it aloud to me, but he read “Awe-tis-ZUUUUUMMM” – “Is- er Dis-er”- “Does not ‘respend pop-oo-lee’ “, so I took that as another opportunity to talk about his autism.

Me: Autism – that is what you have. Do you know that you have autism?

DC: Yes!

Me: It is why you have a hard time talking sometimes and why somethings like loud noises bother you. I put that on your bracelet so people will know that you have autism and can not always tell us the things that you want to tell us and that sometimes it is confusing for you to answer questions.

DC: Confusing.

That is about as far as I got before he lost interest and his attention went back to getting his bracelet on.

Since that day, when he is ready to have me put his bracelet on, he will hand it to me and say “Awe-tis-ZUUUUUMMM”, causing me to wonder if he now thinks that is the name of the bracelet.

In any case,  we will keep discussing it and we will keep trying….

****

**I wanted to add a portion of a comment I received as explanation regarding seizures, pointing out that something that I do understand now but failed to explain or clarify properly above.

From C: Please note “that autism itself does not cause seizures. Epilepsy that is co-morbid with autism is what leads to seizures. I say this because not making that distinction leads to a lot of confusion and fear that isn’t necessary.
Some people develop epilepsy in adulthood or they had seizures that weren’t outwardly visible until new ones appeared later after they grew up.”

Thank you and good point!

***

I have not or will not receive compensation of any kind from If I Need Help for endorsing their product. I just think it is a great idea and a great product. 

I guess this must be home..

I never felt as if I had a “hometown”. Of course I do, but I don’t have a special affinity to the town where I was born.

We moved away from the town where I was born when my mother re-married. I was five and my brother was 4. We moved away from her hometown to my stepfather’s home town.

We moved four times to different neighborhoods around his hometown while I was in elementary school. First temporarily to a third floor apartment, while they were looking for a house to buy. A brother was born while we were there, so space was becoming an issue.

Next, to a rental house across town, again temporarily, as they decided to build instead of buy. We lived there for a couple of years until the house they were building was completed.  There, in the rental house, another brother was born.

When I was in 3rd grade, we moved into the finished new house. The new house was just one street up from the old neighborhood, but there seemed to be some sort of line of demarcation between the two neighborhoods. It was like a different world and there did not seem to be any socialization or interaction between the two areas at all.

Being from the other side of this line, it was difficult fitting in and by the time I began feeling like I fit in a bit, still another brother was born, making a grand total of 4 boys and 1 girl (me), in case you’ve lost count. So the search was on for an even bigger house.

During the summer before 8th grade, we moved into the larger house all the way across town, in an entirely different school district and an established neighborhood where every one had been living for years and were friends since birth. I was such a drama queen about moving that I was allowed to attend 8th grade at my old school and graduate with my old friends. In the mornings my step-father would drive me to a bus stop. In the afternoons I would walk home from the bus stop and it took about an hour. By the time I made it home, it was close to dinner time so I did not do much socializing in my new neighborhood. I did not want to anyway.

None of this, of course helped to make me feel comfortable in this new neighborhood. I did not hang out there all that often until I had to start high school. Yes, I did eventually make some friends, but I always felt uncomfortable when we had to be around my friend’s friends, because I was the one who didn’t know anyone or remember the stories and/or people they talked about, I didn’t have the same school experiences or memories. Odd man out, that was me.

*****

Fast Forward: When DC’s dad and I divorced when DC was 3, I moved us to the town where we live now.  I moved him here for one reason, and one reason only; the school system. At the time, this town had the best special education program in the state, so this was where I wanted DC to be. This town was looked upon by ‘City’-burians as affluent and a bit snobby, so the divorced woman with a child, renting (gasp) and working full time (double gasp) did not feel all that welcome. I joked quite often that I was sure I had a ‘City’-bury stamp in the center of my forehead.

Two things that really stand out to this day when I remember our first few years in this town:

 – Watching the local channel to see if there were any Park and Recreation activities would be appropriate for DC. They listed the activities being offered and the subsequent prices. There was a price listed for “Residents” and a separate price for “Outsiders”.  Yes….. “Outsiders”; that was the term they used. Not “Non-Residents” as you would see listed in any other town, but “Outsiders”. At that time, I was technically a resident but I could not help feeling like the “outsider” that they spoke of.  

 – We had been living here maybe a year and a half, if that. I had DC involved in a Special Needs Bowling League. His teacher told me about another activity that DC might be interested in and gave me the paperwork so that he could join. I filled out the forms and brought them to bowling the following week because I knew that they would be taking registrations there. I gave the man collecting the registrations DC’s form and 30.00 cash for the registration fee (a co-worker of mine, who’s son participated in the program told me ahead of time that they did not take checks. I did not know at the time that his wife did not let him write checks, so she probably just told him that they only took cash). Long story short, my forms and registration fee were somehow lost. His teacher called me when she saw that his name was not on the list of registrants and I in turn called the President, whom I had never met before, to explain when and where I turned in his registration forms and who I gave them to. I did give everything to the correct person, I just had his name wrong. (The same person who gave me the wrong cash vs. check information, pointed out the correct person at the bowling alley when I was looking for the person collecting the registrations but gave me the incorrect name for this person. When I say it was the wrong name, I mean it was really the wrong name).    

“I assure you, that you did not give the forms to my ex-husband.”

Yikes! Could this get any worse?

I explained to her that being relatively new in town, I did not know any of these people and this was the name I was given by someone else. I went on to describe the person I gave everything to. She knew who I meant and yes, as I said,  it was the correct person but still, it seemed she had not received it.

“Well, I suppose I will just have to take your word for it, won’t I?”

Sigh….. Fortunately I was much nicer then and I let that go, but it was not the best feeling in the world.

The next day during my weekly visit to DC’s classroom, his teacher asked if I had gotten everything resolved. I told her the story and added that “It must be the ‘City’-bury stamp on my head” at which time she turned to one of the IA’s and said “I didn’t tell her that”. I did not know what was going on at first, but as it turned out, the IA she was speaking to was also from ‘City’-bury. She grew up in the very same neighborhood that I lived in through high school and her father was a guidance councilor in the high school that I attended. I actually worked for him in the guidance office for a few years during my study hall hours.

Apparently, she had used that same phrase and felt the very same way on occasion. I was glad to know I was not the only one with the dreaded stamp on her forehead.

****

Fast Forward: We have lived in this town now for 22 years. The original plan was to stay here until DC finished school. Although I could never afford to buy a house in this town, I’m sure I could afford one elsewhere. Not a great house, by any means but better than a 4 room rental.

He has been out of school for 5 years now and we are still here. I have many good friends here now. More importantly, DC has friends here. We like living here. We semi fit in. We are involved in the community.

The woman in the registration story and I became good friends a few years after our not so great first encounter and have remained friends to this day. I wonder if she even ever made the connection between that person on the phone that night and me? I never thought to bring it up.

Although I can still sometimes see and feel that old ‘City’-bury stamp, I do feel as if it is beginning to fade.

So, I guess we must be home…..

***

 This has been a Finish the Sentence Friday post. This week’s sentence is “My home town…” 

Finish the Sentence Friday is a link-up where writers and bloggers come together to share their themselves with a particular sentence. If you’d like to stay ahead of future sentences and participate, join our Facebook group.  

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…….