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.

 

 

 

 

 

 

 

 

 

 

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.

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!

 

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

 

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

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

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

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

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

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

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

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

That was the last seminar that I ever attended.

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

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

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

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

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

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

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

If I haven’t said it a hundred times, then let this be the hundredth; if I were to live forever, I would not change a thing about my son. He’s happy almost all of the time. He loves his life. He is in his own little happy world, but he won’t always be able to live in his own world, he will someday have to live in the real world. Then what?”

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

 

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

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

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

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

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

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

Because he doesn’t….

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

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

 

 

 

 

 

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!

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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. 

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…….