The “Fitting Room”

 

Watching the third episode of the new Netflix show “Atypical” I was taken aback first by the mother not wanting to take her son to the mall because he had an issue there the last time they went and secondly, once there, actually pointing out all of the noises that I imagine would have normally bothered him but were clearly not bothering him (as he was on a mission) at the time. It was as if she was disappointed that he was not having an issue with any of it.

There are plenty of things that I do like about this show. The mother is not one of them.

DC is not anywhere close to as independent as Sam is so I can not relate to all of it, but I do think that the literal thinking Sam displays and the way a word might get stuck in his head so much so that he has to repeat it over and over are spot on in relation to DC.

As much as I do not like or agree with the mother’s actions, it did give me pause. Am I so overly sensitive about DC and his surroundings that I may possibly be causing a problem just because I think there is going to be a problem? Am I so sure about how he will react in a situation that I am actually causing him to act that way? I do not think that I do. We go many places and put him into many situations and I think that most of the time, we go thinking (hoping) there will NOT be a problem. But who knows? It is certainly something to think about and keep in the back of my mind.

I WAS a bit surprised by his mother calling ahead to a clothing store to let them know that her son needed a quiet environment, no loud music, no crowds and low lights in order to try on clothes in the fitting room.

I was surprised because it would never occur to me to do that. Parents in a different situation than DC and I, may do that and I am not saying that it is right or wrong – it just would not have occurred to me at all.

I have said quite a few times in earlier posts that I do not necessarily look for accommodations for DC. I want him to try first. This does not mean that if the trying does not work out, or I can see that practice is not going to make it easier, I will not look for a better way or an accommodation – I just do not begin that way. Again, that is just me. That is what I am used to. Accommodations were not available or even thought of when DC was growing up so we either did it the way everyone else had to or we would not be able to do it at all.

I will say that like public restrooms and the complete lack of enough “family” restrooms, fitting rooms are a huge cause of stress for me and DC.

Fortunately most of the time I do not have to have DC try on clothes. There have been times when he had either gained or lost weight and I was not sure what size to purchase that he has had to use the fitting room.

He does not like to “try on” clothes at home to begin with, so trying things on in a store does not make him happy. Then we have to contend with the fitting rooms that are rooms with long hallways of stalls where I can not see him once he goes in. I can not see who might be in there with him either.

The first time I had to send him into a fitting room as described above, he was just going in to high school. I was fortunate that there was a room available right in eye-shot of the main door.

I sent him in with four pair of pants and gave him as many instructions as I could. I wanted him to come out WITH THE PANTS ON so I could see if they fit. The first thing he did was come out in his underwear to hand me the pants he was wearing. I hurried him back in and told him to hang his pants up in the room so he could put them back on when he was finished trying on the rest. He tried the on and came out to show me the rest without incident. Then he came out dressed and carrying all of the pants. It was then that I noticed another flaw in my instructions – he had pulled every single tag off all of the pants.

I have to cut all tags out of his clothes at home so why had it not occurred to me that he would pull all of the price tags and size tags out of the clothes before he put them on? I don’t know, but it did not.

Our next adventure in the fitting room was 3 or 4 years ago when he needed a new suit. Again he was able to use a stall in eye-shot of the door. Remembering the lessons learned from that first time, I gave him his instructions before he went in and continued to remind him by calling all of the instructions into the room as he was changing. The customer shopping around near the fitting room found the whole exchange quite amusing – not in a malicious way though; in a “been there – done that” kind of way. Other than being unhappy about having to try on clothes, DC did much better that time.

By far, one of the hardest fitting room experiences was about a year and a half ago when my step-father passed away. It was not DC who needed something to wear (the suit still fits), it was me. I had gained weight and really just alternated between the 3 or 4 pairs of pants that fit me, quite uncomfortably – for work (I would not buy more because buying a bigger size would be admitting defeat). None of these were dressy enough for a funeral so I had no choice. The wake was that night so I only had that day to find something. I had to take DC with me. Not really knowing my size, I knew I would have to try on a lot of pants and in a few different sizes in order to find one item, just one that would fit and that I did not completely hate.

I found the fitting room and – sigh…. it was room with a long a hallway with many many stalls. I was not sure what to do. There was a bench right outside and I sat DC down and told him not to move. I knew he would not go anywhere, but I did not know what he would do if someone came up and asked him why he was sitting outside the ladies dressing room or if someone asked him to move or if someone asked him anything at all. I told him to call me if anyone talked to him. I went in, yelling to him with each step I took. I did not even make it into one of the stalls when I decided I could not do it.

I came back out and decided that I would just have to buy everything and hope there was something there that fit. If there wasn’t, I was done for because there would not be a lot of time to come back and buy a bunch more just to try on. If there was something that fit, I would just have to return the rest another day.

As we were walking towards the front to pay, we happened upon an alcove with a big round couch in the middle and separate fitting rooms all the way around. Better still, the doors did not go all the way up and I could look over the top! DC sat on the couch and I was able to try on everything while still being able to see him and talk to him from less than 5 feet away.

This kind of set up worked out perfectly and would have been just as helpful if DC were the one doing the “trying on”.

“Family fitting rooms” and more of this type of set up would go a long way in helping to take some of the stress out of shopping and trying on clothes for us and our children………

****

The store with this Fitting Room set up is Kohl’s, I do not know if all of their stores are set up this way but I thought that they deserved a mention. 

 

 

 

 

 

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alone…

It started this with the morning application of sunscreen and insect repellent. He does not like it but he puts up with it most days. Today is a camp day, but because he works in a greenhouse during the week, the sunscreen and insect repellent is a daily chore and it begins in the spring – every day. I know that he is quite sick of it at this point, but most days he can just put up with it.

This was just one of those mornings that he couldn’t. That is where it started.

I could see it coming. It looked like a Monday morning (Monday Meltdowns). I did not hear “gotta hurry, hurry, hurry” but I heard the way he went up the stairs to put his stuff away.

When he came down, the running back and forth began. I asked him if he wanted to go outside so he’d have more room to run. I figured he would run up and down the front sidewalk as he does on Mondays when he is having a problem.

We went outside where he had more room to get it all out.

I am not going to describe it, only to say that he had himself so worked up that I really was afraid that he would pass out. It scared me.

He finally sat down with me and hugged me – we sat there hugging for a few minutes while he got his breath back and then he was fine.

DC had meltdowns when he was young and in comparison, these may be the same except maybe they just look worse to me because he is so big now. Maybe they are worse. Maybe it is just that I haven’t seen what I would call a meltdown in such a long time until these started again. Maybe it is his seizure meds. He’s been on them 2 years this week (I will be talking to his doctor next week when he has his appointment) – I don’t know.

Doug is DC and Salli’s transport to camp on Thursdays and Fridays and by the time it was time for him to leave, he was fine. He left and that left just me, by myself to get a grip.

I texted Doug to see how drop off went and he said it was fine.

I am off on Fridays for the summer and today I really needed not to sit here and wallow about it by myself. But it is times like these when I realize just how alone I am. I needed someone to talk to, but I needed someone who would not panic or feel uncomfortable if I burst into tears in mid-sentence.

Doug is off as well, so in my text I asked if he wanted to go for coffee. He couldn’t.

There was really no one else I could call. It’s Friday, people work. If they are not working, they can not always just drop what they are doing to listen to me – although I have done just that plenty of times to listen to others.

I even thought about calling my mother, but I know that it is only other people that get to have problems, I do not; I am just “hysterical”.

So…. I got in my car and drove around and cried like an idiot. I did not want to drive too far because I was worried that even though he was fine when he left, he had himself so worked up that I was afraid that something might happen (like a seizure) and I did not want to be farther away from camp in case I had to go and pick him up. Really all I wanted to do was to go to camp and get him for some more hugs, but it is his last day and he was looking forward to “Awards Day” so I did not want to ruin that for him. So I drove and listened to music and it really did not help.

So now I am home, writing this – just to get it out.

Yes, I know this should be about him, not me and that this may read like I am having a pity-party for myself. Maybe I am. Maybe I needed to have my “moment” so I can just move on with today. We should all be allowed to have our moments. Hopefully when you all are having your moments, you have someone to talk to and help you through it….

Here’s hoping, anyway…

****

Thanks for “listening” and not judging my pity-party.

 

 

 

 

 

 

 

Welcome to “Monday Meltdowns”

Mondays are difficult for many of us. Mondays are especially difficult for DC. It does not matter if he had a busy weekend or just sat around. It does not matter if he went to sleep early or late.

It just does not seem to matter.

He wakes up relatively happy every morning – Monday included – and goes about his business. For some reason; and it usually happens right before he is ready to leave – his mood changes quickly and drastically.

He does nothing differently on Monday morning than he does any other morning and I try to be very conscious of what I might say or do. I try not look at him for too long or say anything that will set him off. You know, like when you have to try not to look when your child tries a new food because just the act of looking at him will make him stop eating it. That is how our Monday mornings go. Avert your eyes and don’t say anything.

Everything is done the same way and in the order that he likes to do it.

As careful as I am, if I hear…

“I got to hurry hurry hurry” I know it’s all over.

I never tell him to hurry. I am very careful about that, especially in the morning and even more-so on Mondays. We get up in enough time so that he does not have to rush. I do still have to remind him:

Time to brush your teeth

Time to get dressed …. but I do that every morning.

We always leave enough time for him to “Do the writing” (princess papers) while using his iPad.

When the “hurry, hurry, hurry” rears it’s ugly head as it did this morning, I tell him that he has plenty of time. There is no rush. I have to try but I know that by that time, there is no turning him back.

When his transportation came this morning, DC was in rare form and ran, full speed out to the van. I was willing him with my mind to get in, because if he stops and looks back at me – he will come charging back.

And that is what he did.

He came charging back so fast that I was sure he would not be able to stop; he did stop running before knocking me over but he was not happy.

And so it began…..

I won’t go into details but it was loud, very loud…

After what seemed like an eternity, he calmed himself and started walking slowly back to the van. “Slowly” was good and I was just thinking that this hadn’t been all that bad compared to some Mondays, when he started running full steam again…. to the van and right back to me again…. to fulfill his mission of spreading of autism awareness to the neighborhood.

The driver had gotten out and opened the door while he was waiting for all of this to end, in the hopes that if he did not have to stop to open it, he would get right in. It worked. He went back to the van again and GOT IN.

The van started backing out of the driveway, stopped and pulled back in. DC jumped out and ran full steam back to me again for just a touch more awareness spreading. Finally he started back to the van; walking this time, so I was hopeful. He got in the van – even more hopeful –  and the van drove away. I stood there just in case but it did not pull back in.

I know I will never know what goes on in his mind all of the time but still, it bothers me because I can not figure out what triggers this. What sets him off all of a sudden? For now, I am going to have to go with the fact that NO ONE likes Mondays and this is just the way he reacts to them lately. Mondays were never an issue until the last year or so.

It could be that he is just tired, but then why is he all right most of the morning? I watch and watch but I just do not see what triggers it and why just over the last year or so. Nothing about his day is different.

Yes, I have been mother to my autistic son for 26 years and yes, I know that we sometimes cannot figure out what is going on. I know that….

Knowing that does not stop me from trying to figure it out… It never did and it never will.

****

I normally use my other blog for random face book statuses, but these fit the mood here today:

After a holiday weekend so Tuesday was our Monday:

 

Another Monday holiday, so Tuesday was again our Monday:

When Mondays go well, one begins to worry..

#NotSoBadMonday (a big chunk of ceiling came down in the kitchen right after this next status was posted, so the rule is; if DC doesn’t get me, something else will)

 

 

Monday and Brief Power Outage Combo!

 

Hope you all had a Happy Monday!

Frosting

After having oral surgery and becoming VERY tired of eating soup, I went searching through my refrigerator and cabinets for some more exciting “soft food” when I came across a can of frosting in one of my cabinets.

Why did I have a can of frosting?

Beats me!

My baking skills leave a lot to be desired.

How old was this can of frosting?

Your guess is as good as mine – but in my mind, it fell into the soft food category; so…. okay. Score!

Finding this can of frosting brought me back to when DC was little. I always had a can of frosting in the refrigerator. It was a staple.

I am not a fan of cake, really – but frosting?

“Just the frosting, please.”

Never trust a person who says the cake is delicious but the frosting is just “too sweet”.

Really?

Move away from the cake… just hand it over.

I have it on good authority that THE second best thing for a frosting junkie is access to leftover cake, preferably refrigerated but room temp will do.

Leftover cake in the privacy of your own home gives license to slice (not scrape…. slice) off all of the frosting around the sides and of course the top so there is just a very thin almost just crumb-like layer of cake with the sliced frosting.

Be warned! There will be complaints that you are leaving everyone else with naked cake. What is everyone else supposed to do with a naked cake?

Donate it to the “frosting is TOO sweet” people or throw it away. Who cares?

It’s frosting-less cake.

Nobody wants it, but feel free to let it sit, naked in the refrigerator for a few more days for appearances sake to sort of console yourself into thinking that you left some for somebody else. (You also rendered it useless for those you were so nice to leave it for. But letting it sit there creates the illusion that you do not in any way understand that you have ruined the leftover cake for everyone else)

The frosting that I always had on hand when DC was young and replaced as soon as it was gone, was MY frosting. It was there just for me when I decided a spoonful of frosting was in order. (of course I was much <MUCH> thinner way back then).

Some people keep a stash of chocolate. I kept frosting.

That along with my (MY) own jar of Peanut Butter for those occasions when a spoonful of Peanut Butter was the craving, were always present in my refrigerator. I still hide my own jar of Peanut Butter – because some things do not change.

DC did not know about this frosting that I found in the cabinet, so I declared it, in my head to be mine. My mouth had been ripped to pieces. It had been a week and a half of soup and other foods that I do not like. It had been a week and a half of pain and after all of that time stuck in the house in pain and starving, this is what my life had come to…. total over-the-top excitement about a can of frosting!

But I deserved this frosting.

I only took it out when DC was not in eye shot.

MINE

I felt guilty hiding it from him, but not guilty enough to share it.

It was mine.

Mine, I tell you!

All good things must come to an end….. he caught me.

He wanted some.

Drat!

Not wanting him to pick up the bad habit of eating out of containers or finish the last of it,  I spread some on a few bite size cookies for him.  He was good with that.

It was the tail end of the can so there was just a little bit left for me.

It was the tail end of the can. He knew that, so he would not be looking for more.

It was the tail end of the can and although I thought about it – a lot,  it will not be replaced.

It was the tail end of the can…

I found a can of frosting.

I was excited.

It is gone now.

That is all.

 

 

 

 

 

 

 

 

 

 

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.

****

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.

 

 

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’


IMG_0382
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.

********************

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:

******

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.

 

*****

(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!