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.

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)

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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?”

****

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.

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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….

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**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.

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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…..

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 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…….

Putting the Screws to the Adults that Fall In-Between

If my posts seem to be a little more “downbeat” than usual lately, it is because that is the way I am feeling with all that has gone on and is going on with heath care, medicaid, (let’s not forget our whole Social Security fiasco) and now new regulations regarding work/agency programs that can also directly impact my son.

Just look at all you have to look forward to when your child becomes an adult.

A few months ago I wrote the post below about Sub-Minimum wage and how, as much as people seem to want to do away with it all together, it has been beneficial for DC (please read the post below, Sub-minimum; Another View,  in it’s entirety before assuming anything about that last statement). He is working for an agency – an agency that created these jobs for people like him who will never be able to go out and get a job in the community at minimum wage without constant support. This is not to say that there are not other companies that have disabled adults working at sub-minimum that should be paying minimum wage. There is abuse and there are loopholes in any system and all entities that hold a below minimum certificate should be monitored closely. But, let’s not throw away the baby with the bath water.

He is not in a sheltered workshop. His program and others within the agency are open to the public.

A few months ago I received a letter that due to new federal regulations, all individuals making sub-minimum wage must attend “career counseling” once a year.

If you have been around here for awhile, I will just let you sit with that a minute……

??????????????

I would have liked to have been a fly on the wall for that- but okay, I get it. The government wants to be sure that there is no one working in GSE (Group Supported Employment) at sub-minimum that is capable of working out in the community. But really, every year?

Next came the notification that many of the programs at this agency (and other agencies, I imagine) have been re-designated as “Transition Programs” from GSE programs. Transition, meaning that the clients cannot stay in these programs indefinitely. They must eventually transition into community employment.

I had DC’s 6 month IP (no “E” as he is out of school) meeting today and the woman who was supposed to explain what his agency is going to do did not attend, so we will have to schedule another meeting, but this is what I have been able to piece together right now:

Because these programs are open to the public but our children do not GO OUT into the public, even though they have customers that they deal with on a daily basis, they have been re-designated as transition programs. What could possibly be the difference?

These programs/jobs that were created for our adult children who are in-between the adults that are not able to hold any type of job and the adults that are able enough to hold a job out in the community, are now to be considered transition programs leading to employment out in the community.  If they find that DC does not qualify as “able to transition” to a regular job in the community, he may end up in a day/recreation program instead of being able to go to work.

OR: The agency has to come up with different options for GSE employment; meaning sending crews or enclaves to grocery stores or other businesses at sub-minimum wage with support staff.

So, we have some states trying to do away with sub-minimum all together because they envision greedy employers who would rather pay sub-minimum wage than hire someone at minimum wage and they envision disabled adults being taken advantage of. Yet, the government is willing to do away with agency jobs that were created for our children and other adults that cannot hold a regular job, in favor of sending them out in groups with support to a grocery store (or where ever), taking a minimum wage job at sub-minimum wage. Isn’t this exactly what the sub-minimum critics are complaining about?

Even if this sort of program proves to be beneficial; there is the added obstacle of finding businesses that are willing to participate in this type of program. That is not always easy; I know this. I have heard it from many of the agencies that I visited before placing DC in his current program.

I really do not understand this at all, but once again, it is children like mine; the ones who are in the middle that no one seems to be taking into consideration….

(My caseworker did say that the wording was very foggy, so this is what they were able to decipher at this time. I will post updates and/or corrections as I learn more)

From August 2016:

Sub-Minimum; Another View
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I just received a letter from the agency that DC “works” for. To paraphrase; there are new federal rules that will impose limits on people earning less than minimum wage. The clients that are already earning sub-minimum can continue to do so, but they will be required to receive “career counseling” annually. Basically, they will no longer be able to accept new clients at sub-minimum.

I know that there is cheering and celebration going on after reading the paragraph above but I ask that you take a minute to read another side to this issue, because there are two sides to this. If your child is not an adult and out of school, the reality of the “other side” for many may not be something you might be thinking about right now.

I agree that EVERYONE is entitled to be paid minimum wage, EVERYONE! The reality is that some of our children will never be able to work at Walmart, Target or hold a “regular” job. Should they earn minimum wage if they do not hold a regular job? Absolutely! Do I think my child deserves minimum wage? Absolutely again, but unfortunately the funding is not there to support it.

When DC was young and in school, I had no idea how any of this worked. I did not understand agencies or Group Supported Employment at all. I would have had the same knee-jerk reaction to him working at sub-minimum wage. I would have envisioned sweat shops and whatever other horrors that you might be envisioning right now.

My son works for a non profit agency – Group Supported Employment. He works in their greenhouse which is open to the public. He has staff supporting him all day, everyday. He earns less than minimum wage.

DC is 25 and will never be able to work without support – a good amount of support. The agency that provides his work program is funded by the state. Funding is cut each and every year – each and every year. We can all scream and yell that these programs need more funding, but the reality is that funding for programs for the disabled is cut every year. If his agency is made to pay their clients minimum wage, they could only afford to keep 6 of the 12 clients working in the greenhouse. Where would that leave my son and others like him? He has the right to feel productive. He has the right to do something meaningful with his time every day. Where would that leave him? Sitting home all day or in a day program (like a day care)? He loves his job. He likes to go to work every day. Basically what this letter is saying is that they will no longer be able to accept ANY client at sub-minimum, which in reality means they will not be able to accept ANY new clients at all – at least in their work programs. So where will all of the students leaving the school system go if they are not able to work at a regular job out in the community?

I do believe that agencies holding a below minimum certificate should be monitored closely, but to do away with them blindly is doing a disservice to those that are not able to hold a regular job.

This agency also supports and trains clients who are capable of going out and working in Walmart, etc. Those clients, after they are trained DO make minimum wage or more because they are paid directly by the company that hires them – while still getting support when needed and at times, transportation through the agency.

If your child is lucky enough to be able to work without support out in the community, that is great! If not, I hope that in the future these agencies are able to receive the funding and support that they need, because all of our children deserve that. Until then, please do not take away their opportunity to have a job like everyone else and benefit from the interaction with the public, while still having the support of staff to help them throughout their day.

I am in no way advocating for anyone to make less than minimum wage, I am saying that right now, this is the reality for my child. He is working like everyone else. He is in a place with staff, he is safe and he is being looked after.

For those of you that may be envisioning the “sweat shop” scenario; the “clients” attend the program for 6 hours per day. They do as much work as they are capable of doing. They are not forced to work. They are not doing hard labor or strapped to a chair to meet a quota. They are learning, they are socializing they are out in the community and making contact with the public. They are surrounded by and supported by agency staff. These “businesses” are created for the soul purpose of providing “employment” for their clients. They are not booming businesses and most of them are not profitable. Even though they are open to the public, they are providing a service to our kids, more than to the public (I can only speak of the agencies in our area, but I imagine that it is about the same in most agencies).

While the states continue to cut the funding of programs for people with disabilities, the Federal government in turn expects these already struggling agencies to now pay minimum wage. They are required to maintain a certain level and staff to client ratio, but when the funding disappears, the level of staff still must me maintained.

Think for a minute about where you think your child will be after he/she finishes school. Will he/she be able to go out and get a job and work without support? If the answer is no, or maybe not, then think about just what they will be doing instead. Will they stay home all day? Enter a day program/daycare? What do you think they would want to be doing? Would they like to say they have a job like everyone else around them?

As much as DC lives in the present and “what comes next” is not what is in his head most of the time, he does know that Mom is an adult and has a job. He knows that Doug has a job. He knows his friends have jobs. He knows that most adults have jobs. He knows that he is an adult. He likes that he goes to work. He likes that he has a job. But, unfortunately the government would rather see a large portion of this population sitting around at home or attending day/recreation programs than do something that might make them feel productive…. to have a job like everyone else.

Happy “Twenty-Sixteen”

Here we are again. An entire year sped by in the blink of an eye. DC will be celebrating his 26th Birthday next week, or as DC likes to call it – his “Twenty-Sixteen Birthday”.
Even though he has been announcing it daily since the calendar flip to March if you were ask him how old he is (or will be) he will almost every time tell you that he is 18. That is always his first response. When asked a second time, he will tell you Twenty-Six. He does know the number, what that number means to him other than cake, friends, ‘out to eat’ and gifts, I really do not know – but he knows the number. Twenty-six!

He does know how to say the number, it’s the “th’s”, “st’s” and “nd’s” that he just can not grasp. He tries but they do not make sense to him. I remember the time that he announced to anyone who would listen, including the check-out girl at the grocery store, that it was “Mom’s Fifty-tooth birthday”. So instead of his 26th;  DC’s ‘Twenty-Sixteen” birthday it is.

I wrote the following last year on his 25th and there is really not much more I can say about this boy of mine. He makes me proud every single day. On the other side of that joy; the older he gets, the older I get and my worry about the rest of his life gets overwhelming at times. I want to know that he will be happy. I want to know that he will be well cared for. I want him to have the best life possible. I want to KNOW all of this now. That is the only thing I want or would ask for if granted a wish.

Happy Twenty-Sixteen beautiful “boy”. I love you ‘Magly’.

****

From March 2016, imaginatively titled:

Twenty-Five!

 

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This week we celebrated DC’s ‘twenty-five birthday’ (DC-speak).

TWENTY-FIVE!!!!

I just cannot wrap my head around that fact. I cannot believe so much time has passed. I cannot believe that the little boy that I once carried around… everywhere, is 25 years old. I have heard about his ‘Twenty-five’ birthday all day, everyday since the calendars changed from February to March, but it really did not hit me, emotionally until the day before, when some tears were definitely shed.

‘Happy tears’ – I told him. He loved that.

He has come so far in those 25 years….

 

From the boy whose only word until he was almost 7 years old was “”Momma” –

To the boy that eventually moved on to –

“Mommy” – and then –

“Mother” when he’s feeling a bit more formal and/or reciting Disney.

To the man who at times decides that “Vickie” is appropriate because in his mind, he is an adult and he should call me by my adult name.

 

From the boy who was always the loudest person in the room but could not tolerate noise or crowds –

To the man who is still the loudest person in the room, but can tolerate noise and crowds so much more easily, most of the time.

 

From the boy with the very limited menu who I thought would never gain any weight –

To the almost 6ft, 200lb man, still with a limited menu, but a bit more open to trying new things.

 

From the boy, who due to a delayed reaction from almost choking, completely stopped eating for almost a month –

To the man who can still have the random delayed reaction,  but now his Mom can usually recognize it and figure it out much more quickly.

 

From the boy who could not stand to be away from me at any time and had no interest in his peers and socializing –

To the man, who still must know exactly where I will be, but looks forward to spending time with his friends and attending social activities.

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From the boy who, I was told would never speak

To the man who never stops talking.

 

From the boy who was always lovable with me when he was a baby but had a very low tolerance for his head, ears, face and so many other touches that I remember saying,  “If he wasn’t so lovable, I would think he hated to be touched”

To the man, who will still hug and kiss his Mom (and is not embarrassed to do so), but will also hug his friends, his family and just about anyone he wants to, whether they want a hug or not.

I cannot be more proud of my boy…. I cannot love this child more. He amazes me everyday. He makes me laugh everyday. He fills my life with worry. He fills my life with love. I would not trade the last 25 years for anything in the world. He is the joy of my life.

If I had only one wish; my wish would be for the rest of his life to be as happy as it is right now and that he will be just as full of sunshine and light as he is right at this moment……

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Re-Blogged: Why You Should Be Wrestling With the Idea of “Handouts” in Healthcare

As most of you know, the older I get (and although I have everything I am supposed to have and more in place),the more I obsess and worry about what will happen to DC when I am gone. There are days when that is all that I think about and days when I just can’t bear to think about it.
This is a very hard read (emotionally) and it took me a few tries to get through it, but it is an important read…
Don’t be afraid to share it.
via: Running Through Water

***

“I read a story this morning in the news about a woman in Texas who stopped on the side of the road to chat with a homeless man.  Her curiosity got the best of her since she passed him in the exact same spot on the side of the road four times a day for three years. You can see it here.  He was very thin, unshaven, filthy.  We’ve all passed “him” on the side of the road, haven’t we?”

 

Continue Reading: Clutching at the Heels of the Disabled: Why You Should Be Wrestling With the Idea of “Handouts” in Healthcare

There’s Still More! (Seriously, there is!)

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We are about to venture into the ridiculous….

If you read my last post you will know that I because of an account I had, I was required to pay back Social Security $12,000.00 in benefits – which I knew was dead wrong.

It took them all of 4 days after receiving the account information and the spend down documentation to send me a letter informing me that I had to pay back a year and a half of DC’s Social Security benefits in the amount of $12,000.00.

After sending two appeal forms and hearing nothing I finally got to talk with someone (On December 17) who informed me that the issue was disposed of! They were very quick to let me know I owed them a large sum of money but very lax in notifying me that the case was disposed of. Understanding the incompetence of this agency, I asked for a letter verifying that fact. I was assured that a letter was going out that day.

In the meantime, I was notified that my step-father, without my knowledge and against my expressed wishes, made DC the beneficiary on a small life insurance policy in the amount of $1500.00. He is not allowed to have more than $2,000.00 in resources at any one time. $1,500.00 is less than $2,000.00, you say? He should be all right, you say? No! That is not how it works. To determine his resources, they take the highest amount of money in his account for the month and add the extra resource to that (If he did not have an account, then they just take the amount of his monthly check and add from that). The highest balance will always be the amount of his Social Security check, so it will always come up over $2,000.00, not by much but it will be over (a friend of mine’s son had his benefits suspended for a .20 <twenty cent> overage).

And Hey! – Fun Fact!

If you would like to be called stupid, hysterical and be screamed at by everyone that you know and are related to, just have something like this happen. It is just fun, fun, fun.

Just to answer all of the “questions” asked “very loudly” of me (because everyone else without adult children with special needs knows better, you know).

No! I cannot just not accept it because the insurance company is required to report it under his name as abandoned. This means that his benefits will be suspended until I spend it down (without actually having the money because I did not accept it) and will still be on the hook to pay back whatever amount they determine I should pay.

No! I cannot take it and deposit it in an account out of state, because the act of taking it makes it a resource. It does not matter where it goes.

No! I cannot deposit into his Special Needs Trust, an Able Account or a Burial Fund, unless his trust etc., was the designated beneficiary to begin with. Yes, depositing it into one of those places MAY qualify as spending it down, but it would still be considered a resource because it was paid out to him BEFORE going into one of the accounts mentioned above.

My step-father’s executor gave the insurance company my contact information. The insurance company, because DC is an adult, needed his guardianship papers so that they could legally talk to me.

Yes! I do have to send them his guardianship papers! We, as parents of special needs children HAVE to go to probate and become the legal guardians of our children when they turn 18 because in the eyes of the state and federal government – special needs aside – they are adults, and should legally be able to make decisions for themselves. If I were not his guardian, I would not be able to talk to his doctors, meet with his day program, chose a day program, make appointments… you get the picture. Bottom line is that HE IS AN ADULT AND BECAUSE THE POLICY WAS IN HIS NAME, THEY ARE NOT ALLOWED, LEGALLY TO TALK TO ME ABOUT ANY OF THIS WITHOUT HIS GUARDIANSHIP PAPERS!

Yes! They could make me pay back $12,000.00 over $1500.00 – they tried to have me pay back $12,000.00 over $2,600.00.

Even though I knew all of this (because I DO know things), I contacted an attorney who verified everything I just wrote.

He also said that I could actually use some of his monthly expenses as part of the spend down.

I already knew the drill, but he advised me to report it as soon as possible. As soon as I received the check (on Dec. 24th) and a copy of the policy I called SS (on the 27th, the first day they were open after the holiday) and reported it. Since I was able to use his expenses as part of his spend down, I was able to fax that and all of the account information to the number I was provided, so at least his SS would not be suspended until  they determined how much I had or did not have to pay back.

Not having heard a thing by January 25th I called again. This time I was speaking with a man, who I was familiar with, not personally but via people that I know that have had to deal with him, so I was on guard. First, I explained about the appeals and that back on December 17th I was told that the first situation was waived and has been promised a letter verifying that.

He went from zero to 100 and screamed “IT WAS NOT WAIVED!” – I began to panic (this is why I wanted a letter. I wanted it in writing). I explained again that I was told that it has been waived and that I would receive a letter stating that.

“IT WAS NOT WAIVED, IT WAS DISPOSED OF! IT WAS DETERMINED THAT IT WAS NOT A RESOURCE AND YOU DON’T GET A LETTER FOR THAT!” 

At this point, all I could think of was the Soup Nazi “NO SOUP FOR YOU!” but I remained calm, trying not to laugh and explained that this did not make any sense. If I had not called that day I would still be waiting for an appeal date. Why would they not send a letter notifying me that it was waived (there’s that word again).

“IT WAS NOT WAIVED AND YOU DON’T GET A LETTER FOR THAT”.

If someone told me this story, I would definitely think it was a joke or Alternative Facts, but it is not. He was acting as if it was somehow my fault that THEY were wrong and I was now being punished with “no letter for that”.

I repeated again that this did not make any sense and would it not be common practice to notify someone that the issue was “disposed of”?

One more time, he yelled that “YOU DON’T GET A LETTER FOR THAT! YOU WERE GIVEN THE WRONG INFORMATION! Since he seemed incapable of talking to me without yelling at me, I asked for a supervisor. He put me on hold and instead of a supervisor, he came back and said I would be getting a letter for my records.

Next I had to ask him about issue #2. Had anyone received the faxed information regarding that second insurance issue? I just wanted to be sure that someone received it because it was reported and I did not want them to suspend his benefits because they had not received the information with the spend down. Surprisingly enough, there was no more screaming.

He did not see anything in the records, but he said he would transfer me to the person that would have received it. Of course, I got voice mail and to my dismay it was the same caseworker that I had to deal with during the earlier issue.

Did I get a call back? No I did not.

After a week, I called back and left another message. This time she did call me back and – Oh, how nice and sweet she was! I am sure she was hoping that I would not bring up the first incident.

She told me that she did receive the information but she had not had a chance to go through it. I would be notified if she had any questions or if there would be any benefits to pay back.

Being that it is now the beginning of March and they only took 4 days to charge me $12,000.00 the first time, I am cautiously optimistic. Because the account was something that I had no knowledge of and I reported it, spent it down and got them all of the information they required within days of receiving it (not to mention the fact that I already had to spend $2600.00 of my own money due to their “error”), I am hoping that the spend down was enough and this would be the end of it.

– Cautiously optimistic.

I have done everything I was required to do and I verified that someone had received everything, so I am done! I will not be calling anyone to check on the status and if, in fact this is the end of it, there is probably not going to be a “Letter for that” either.

Oh, and I did finally receive the promised letter about the first incident.

“This letter is to inform you that your over-payment has been” ….

Wait for it….

“WAIVED.”

Even though I was informed loudly that this had not been waived, but disposed of, they could not even be honest and put that in writing. They opted for  “WAIVED” so as not to admit any liability on their part at all.

***

FYI, Fortunately, the television I bought for him during the first spend-down, fell off his dresser (I bet that’s a sentence you’d never thought you would hear or read) so it had to be replaced. That and his monthly expenses made spending it down much faster. The new TV is mounted to the wall – the mount was also included in this spend-down.

****

The DAY after I finished writing this – yes, the very next day, I received a letter from Social Security – I will be required to payback one month (the Month of December) of his benefits to them. I wonder if they can just deduct it from that first $2600.00 that I was made to spend?? Oh, and just a little annoyance (if I opt to pay upfront) – “Please be sure to use the enclosed envelope to mail your payment back to us.”

There is no envelope, there never is ……….