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Tag Archives: Autism


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Qwerty makes Quasimodo (and other long words) Quicker

First, thank you to Ritu for helping me find the title of this post. I don’t think I could have done it without you.

That said, what want to talk about has nothing to do with the title. Which is nothing new, so let’s carry on, shall we?

The day Notre Dame burned, Alex came home from school and asked me why I was sad. Having no way, with my limited vocabulary in sign language, to tell him what had happened, my first thought was of Disney’s “Hunchback of Notre Dame.” So I showed him a picture of the movie, and of Quasimodo at the top of the spire. When he saw it fall in the videos online, he understood.

I’ve been in so many grand cathedrals over the years–Canterbury, St. Pauls and Westminster Abbey in London, Notre Dame Basilica in Montreal, and yes, Notre Dame in Paris, among others–that it’s difficult to remember many specific details of any of them. But the sense of awe when stepping into such a church, of being surrounded by its history, leaves an indelible mark on the soul. When I saw Notre Dame burning, I went quickly from shock to denial and then to grief.

Notre Dame Basilica, Montreal, Quebec, Canada

When all is said and done, Notre Dame is an object. No lives were lost–not even the bees on the roof–which is a miracle all by itself. Still, one can’t help but think we’ve lost so much more than a material thing. Places like that are alive with the spirits of everyone who has walked through their doors.

On a lighter note …

My middle son, Christopher, who is autistic, didn’t start talking until he was four years old. In order to help him out, we bought him computer games to play. There was one, featuring Elmo, that had a mini-game in it to aid kids in learning the alphabet. And it worked! Chris began mimicking Elmo’s voice. For a long while he refused to put sentences together himself–everything he spoke was a line out of a game or a movie. But I distinctly remember one of the first questions he answered independently was, “What is the alphabet?”

Chris quickly answered, “Q W E R T Y U I O P A …” all the way to M. Because he learned the alphabet at the keyboard.

Fascinating how the autistic mind works.

Thanks to the three lovely ladies who gave me my three “Q” words for today’s not-A-Z post. You’ll find their links under the words “Quasimodo,” “quick,” and “QWERTY.”

I don’t need any suggestions for “R” words for tomorrow’s post, because I’ll use SoCS to fulfill my non-duty of writing a non-A-Z post. Watch out for my request for “S” suggestions tomorrow!


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#JusJoJan 2018, the 14th – Ultimatum

As a parent, I hand out ultimatums all the time: do this, or you’re not getting that; stop that, otherwise there’s no this. It never ends.

Even though I’ve had a lot of practice over the years with ultimatums, I still sometimes have a hard time knowing when to keep my mouth shut. I’ve learned the hard way that if I don’t follow through with them, they get ignored. And following through is sometimes difficult.

For example, when my behaviorally challenged (good behavior, that is–he’s excellent with bad behavior) son, Alex, gets in his head that he wants to go somewhere, about eight times out of ten he’ll wait until the last minute and then change his mind. The last major instance of this was right after Christmas, when he was excited about all of us going to the mall to shop at the Boxing Day sales. My autistic son, Chris, was all ready to go, waiting outside in the cold–if you’ve never met an autistic person, believe me, it’s not easy to change their mind about something they’ve been promised they’re going to do. We were all about to get our coats on, and Alex said he wanted to stay home alone. Although he’s physically seventeen years old, I’ve never left him alone at home. He’s Deaf, and with the mental age of a six- or seven-year-old, I don’t feel comfortable with it. However, usually when we say to him that we’re going with or without him, he’ll get his coat on and go. Not this time. He called my bluff.

With my ultimatum stuck in my throat, the rest of us piled in the car and left. I managed to get to the end of the block before I turned around and went back home. Sure enough, he’d had his fill of being alone and was getting his coat on when I came back in the door.

Since then, we’ve all gone out as a family once. I made sure to tell Chris that we were going to TRY to go out together, and I didn’t ask him to get ready until Alex was outside and in the car. I learned my lesson. Still have to wonder what my next ultimatum trial will be.

This post was brought to you by Just Jot it January and prompted by the word “ultimatum,” provided by Itinerary Planner! Thank you so much! You can find Itinerary Planner’s JusJoJan post by clicking right here. Please go and say hi! To participate in the prompt, please visit this post, where you’ll find the rules and you can leave your link in the comments.


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#SoCS – Romance – Caution! This post has nothing to do with romance.

I never wanted to be a romance writer. That is, I never set out to be one. I’m more of a relationship writer. And let’s face it, romantic relationships are something most of us strive for, at some point in our lives.

Being interested in behaviors and the thoughts that make us all tick makes it a bit of a no-brainer that I’d write about relationships. Behaviors were explained to me in a course I took, for whatever reason, to learn about what makes my Autistic son do the things he does, and to learn to curb some of his inappropriate and unwanted behaviors. The most interesting (to me) thing I took away from that course is that we all engage in social behaviors, whether positive or negative. All the time. Every time we communicate with another human — or I suppose any living thing — we exhibit behaviors in order to get the response we hope for in return.

Smiling at a stranger, for instance, is a positive behavior. If I smile at someone, I hope for a smile in return. Okay, stay with me on this – these are just examples. If I stand in the middle of a crowded street and start crying, it might be because I hope for someone to try to comfort me, or ask me what’s wrong. This can be seen as a negative behavior. Manipulative, perhaps. Or maybe it’s a genuine cry for help.

The most important part of this is that our children do things like the last example, all the time. Whether they’re Autistic or not. Knowing, as a parent, what is a genuine cry for help and what is simply a manipulative behavior bent on getting our attention can be tricky, but discerning the difference can be a valuable tool.

Go back to the smiling thing. If I smile at, say, ten people I pass on the street and not one of them smiles back, I’m going to give up. My behavior is obviously not giving me the response I’m going for. Rather, it’s being ignored. Now take the screaming, crying child. What is yelling back at them going to do? Encourage the behavior, because it’s giving them exactly what they’re seeking. Attention. No words, and no amount of negative behavior back at them is going to stop their crying. But if we ignore it… and sometimes it can take ten times before they get it… their behavior will stop.

In the ABA (Applied Behavior Analysis) program I was taking, it’s called “planned ignoring.” It’s very simple, and it works. I can attest to that.

Ah, romance. How the hell did I get here? Relationships. Right. All birds of the same feather. And this is why I’m a multi-genre but single-minded author.

This insanely all-over-the-place post is brought to you by Stream of Consciousness Saturday. Find the rules and the prompt here: https://lindaghill.com/2017/03/17/the-friday-reminder-and-prompt-for-socs-mar-1817/ and join in. It’s insanely fun!


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The Advocate

I’m not sure if this is going to come off as a tired rant, a tirade, or an attempt to show others that they’re not alone, but here we go anyway.

Advocating for one’s family is a ball-buster. Bureaucracy makes it so that the people working at the level the public deals with on a daily basis in the schools, and all the way up to the federal government, are in a position to simply throw up their hands and say, “Sorry, this is the way it is.” Which makes it necessary for us advocates to go above their heads. But it’s not as easy as just making a phone call. Oh no. There are “proper channels” we must go through. Forms to fill out and send either by snail mail or fax machines we have to drive around town to find and then spend money on.  And then there’s the wait. The wait that is so damned long we forget whether we do indeed have to just wait or follow up. Follow up? Oh yes, start at the bottom again to get the right phone/fax/post office box number.

And while all that’s going on, something else has come up. It’s a lot of work and it’s stressful! Even if we do manage to talk to someone on the phone we have to go into “stand and fight” mode before we even start. Because nothing is easy and no one at the other end is going to give in. If we’re lucky (and I use that term loosely) we get transfered to the next higher up on the food chain so that we can go through our case again. And then what? Normally it’s wait and see. Or, “We’ll mail you the forms to fill out.” Again.

What I have on the go includes (but is not limited to) getting an aid to help my 20 year old Autistic son in class so he can graduate high school this year; getting the funding I’m entitled to for my other son’s eyeglasses; finding out what the hell is going on with the holter (heart) monitor his cardiologist ordered months ago; sorting which hoops I have to jump through for the nurse at his school who doesn’t want him to eat by mouth this year, this after a lengthy process (with a two year waiting list) of having a swallow study done, followed by a report which was discussed at a meeting with the specialists and the above mentioned nurse to explain that he could eat by mouth; finding out what happened to the money my mother was supposed to get back from the condo corporation after we sold her unit… The list goes on and on. And it’s all wrapped up in bureaucratic bullcrap.

Luckily I’m a stay-at-home mom, so I don’t do anything all day anyway… 🙄

I’m sure I’m not alone in this. In fact I’m sure there are others out there who have it even worse than I do. I have to wonder if there’s a better way to do things. Don’t you?


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#SoCS – Expectations

Is it possible to write stream of consciousness style when there’s someone screaming in your ear, stealing away your focus? I’m about to find out.

“Never expect anything and you’ll never be disappointed.” it’s a phrase I live by. I had hoped – half expected – to get this weekend away, but my ex came down with some kind of a bug so here I am with a disgruntled kid who doesn’t want me to pay any attention to anything but him. I had a back-up plan – his older brother – but he’s sick too.

It’s funny. I spend so much energy attempting not to promise the kids anything until I’m positive it’s going to happen but I don’t always put it into practice myself. But it’s really the same thing, isn’t it? I allow them to hope by saying maybe, or wait and see, but I don’t allow them to expect anything, and so if it doesn’t happen, they’re not too disappointed. It’s good advice, no matter whether you’re doing it yourself or doing it for someone else. Yet I don’t know if I’m actually teaching them anything…

It’s particularly important for someone like my son who is Autistic not to have unexpected events happen. Or for plans to go awry. Although I find as he gets older (he’ll be 20 next month) he’s getting better with change – more able to accept it. Still, there are certain things that can not, in his mind, be tolerated. God forbid anything ever happens to his computer.

I like surprises. Good ones at least, and most of the bad ones I’m able to roll with. Then again, I try not to expect too much.

This full-circle ramble is brought to you by Stream of Consciousness Saturday. Click the link and join in today! https://lindaghill.com/2015/10/02/the-friday-reminder-and-prompt-for-socs-oct-315/

SoCS badge 2015


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There are Two Morals to this Story

It all started last night – two fruit flies sat on the edge of a ledge in my kitchen. Side by side. So close that I could kill them both with one slap. I wound up for the hit (they were big fruit flies, okay?) and I… missed. The fruit flies that is. What I hit was the fruit fly trap (that’s not working). It fell off the shelf knocking a wine glass into the sink where it broke. Damnit! I thought. I smashed a wine glass for nothing.

But that’s not where it ended.

This morning I was getting Alex ready for camp. He followed me into the kitchen and started complaining that his foot hurt. I didn’t get a chance to look at it; someone knocked at the door. While I dealt with that, Alex began to scream. He didn’t come out of the kitchen and the man at the door (the postman) is Deaf, so I ignored Alex and finished up with the postman. When I got back into the kitchen there was blood everywhere. It took me a while to figure out where it was coming from – turns out there was a cut–a hole actually–on the bottom of his foot. Yes, the fruit flies strike again.

So while I was discussing with Alex whether or not he would go to camp, Chris, my Autistic son came downstairs and began to insist I take Alex out of the house. He had plans to spend time in the living room (rather than the computer room where he locks himself whenever his little brother is home). When Chris has plans, they’re not easily changed. He ranted. He yelled. He swore. He threatened. He banged doors and hit walls. And then he went for a walk. Luckily by the time he came back he’d calmed himself – he even apologised and gave me a hug. I still couldn’t help imagine what might have happened if he’d been hit by a car or something while he was out. It’s the writer in me… and I’ve always had a bit of a morbid imagination. Anyway, I could just see it.

Officer: What happened, Ma’am?

Me: Well you see, it all began with an attempted murder… of two fruit flies.

The morals of the story? Karma’s truly a bitch. And never underestimate the significance of a fruit fly.


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One-Liner Wednesday – Quite Right

Chris and Mum

Chris and “Grandma” (my mother), October 2014

When asked whether or not my 19 year old Autistic son was able make his own lunch, like an excellent Master of a servant, he replied, “I’m good at letting my mom do it.”

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Anyone who would like to try it out, feel free to use the “One-Liner Wednesday” title in your post, and if you do, you can ping back here to help your blog get more exposure. To execute a ping back, just copy the URL in the address bar on this post and paste it somewhere in the body of your post. Your link will show up in the comments below. Please ensure that the One-Liner Wednesday you’re pinging back to is this week’s! Otherwise, no one will likely see it but me.

As with Stream of Consciousness Saturday (SoCS), if you see a ping back from someone else in my comment section, click and have a read. It’s bound to be short and sweet.

Unlike SoCS, this is not a prompt so there’s no need to stick to the same “theme.”

The rules that I’ve made for myself (but don’t always follow) for “One-Liner Wednesday” are:

1. Make it one sentence.

2. Make it either funny or inspirational.

Have fun!


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SoCS – Exotic Pets

I’ve always wanted a snake. I love snakes. I remember in high school having a math teacher who used to bring his snakes to school, usually on Hallowe’en – he’d have one or two hanging around his neck as he walked the halls making half the school scream and run the other way and the other half would be drawn to him in fascination.

You may have seen recently that I have two cats living in my house at the moment. I prefer dogs, however. I would have liked to request a service dog for my Autistic son, Chris, but for some reason he’s afraid of dogs and always refused to have one when I suggested it. He’s also afraid of the cats, though he won’t admit it. He hides in his room whenever they come upstairs unless he really wants something from the kitchen. Then he seems okay with them. He’ll pet them even. People ask me if he’s ever had a bad experience with a dog – I don’t believe he has. At least not while in my care, though we did have a babysitter with a dog once…

It’s scary having a child with a huge fear of animals. There was a time when I couldn’t take Chris out unless we were going in the car. I took him for a walk once with my eldest son and Alex who was in a stroller at the time. Chris would have been about eight years old maybe. So we’re walking on the sidewalk of a moderately busy street and these kids coming the other way were walking a dog – a German Sheppard – and the kids were being dragged by the animal having decided it was going to run. Chris decided to run away from it. I couldn’t let go of the stroller because I didn’t know what the dog would do to Alex so I had my other son (nine years old) chase Chris back up the street. Chris eventually ran into the road not having the sense at the time to realize that a car would certainly hurt him worse than the dog probably would. Luckily nothing was coming. Gone were the days of taking the kids for a walk together. It was too dangerous to do alone.

I still worry about him when he’s out alone, even though he’s now 19 years old.

Snaking back to the beginning of the post that’s gone wildly off track… I still want a snake. What do they eat? Not sure how I’d handle the tweets of crickets through the night, and if it’s big enough … let’s just say I like mice too.

It’s a purchase that’s going to require some research.

This post is part of SoCS: https://lindaghill.com/2015/03/13/the-friday-reminder-and-prompt-for-socs-march-1415/ Click the link and join in today! Yes, you!

Badge by: Doobster at Mindful Digressions

Badge by: Doobster at Mindful Digressions


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A Rant about Memes

Facebook is littered with them – memes which state that if you care about something you must prove it by re-posting a picture with a bunch of often grammatically incorrect sentences or misspelled words. Things like, “If you want cancer to cured, re-post this in the next twenty seconds,” or “Share if you think animals have rights too.” Of course I want a cure for cancer to be found, and I certainly can’t stand to hear about animals being mistreated, but I never re-post these things – I don’t feel that I need to prove the way I feel to anyone.

But the one that really gets me are the “children with special needs need to be treated like anyone else” memes.

Like this one:

1517440_10205983584770964_93714871328423065_nNo. No, no, no, no, no. I won’t re-post this on Facebook. (Yes, I know it’s going to show up in my feed when I publish this blog post, but at least it’ll have an explanation with it.)

Do I want people to be aware that kids with special needs need to be treated just like everyone else? Yes. Do I want to be guilted into posting this because it shows I have “a strong heart”? No. Do I sound ungrateful right now? Maybe.

I don’t feel that I need a strong heart in order to love my two kids with special needs, and I don’t think anyone else requires a particularly strong heart to care about them. They just need to be observant and kind. Treating any human being with kindness is a simple matter of compassion and at least an attempt to understand. No one has to prove themselves as far as I’m concerned, unless actually confronted with a situation in which they can provide a smile or at least refrain from saying or doing something nasty.

I mean seriously, how far does one of these Facebook memes go? If someone is confronted with an uncomfortable situation in a public place where an Autistic adult walks up to them and begins to talk about his or her imaginary friend, does the poster of the meme remember they posted it and take it to heart? No. The last thing on someone’s mind in this situation is Facebook.

Rather than posting a meme, learn something. Take the time to think about what you’d do. Read articles written by the parents of a special needs child and take their advice. Being guilted into posting on Facebook is useless unless you know what it means.

Ungrateful rant finished.


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The MMR Vaccination Debate – a Parental Perspective

As the mother of an Autistic child, I can’t help but put my two cents worth in on the recent uprising of controversy surrounding the outbreak of measles and the risk of administering the measles, mumps and rubella vaccination. I do believe I have a rather uncommon perspective on the matter. Unique? Maybe not. Nevertheless, here it is.

When my first son (who is completely “normal”) was one year old we went in for his MMR shot and the doctor suggested that I be immunized at the same time. Much to my regret, I did; I found out a few weeks later that I had been two weeks pregnant with my second son when I had the shot. When my second, Chris, was born everything seemed fine. He was developing according to his milestones and even beyond them. He spoke a few words and played normally. Then, at one year of age he had his MMR. He didn’t speak another word until he was four and a half. He was diagnosed at the age of four with Autism.

It wasn’t until after his diagnosis that I heard about the correlation between the MMR vaccine and Autism; for me it all fell into place. What else could it be? I had one perfectly healthy child and another who wasn’t and there are cognizance issues in the history of neither mine nor their father’s families. Then a study was done. It was “proven” that there is no medical evidence that the MMR shot has caused Autism in anyone. I remain skeptical to this day.

BUT.

When Chris was five years old I had another child with a host of different problems. Alex was born with Noonan Syndrome. In the 1960’s Dr. Jacqueline Noonan discovered a set of characteristics when, put together, proved to be a congenital disorder. My baby’s most life-threatening symptoms were those of his heart: an atrial septal defect, hypertrophic cardiomyopathy, and the pulmonary stenosis that was bound to end his life within a year if we didn’t have it corrected with open heart surgery. We were told he had a 50/50 chance of surviving the operation. We went through with it when he was a mere two months old, and yes, it nearly killed him. When the surgeon came into the room and told us that he had just resuscitated our son with open-heart massage and that if his heart stopped again they’d just let him go peacefully we were both frightened and devastated.

Here is what gives me my uncommon perspective on the MMR controversy. I had Alex immunized when he was a year old. Measles, mumps and rubella are all life-threatening illnesses. Having the choice between a healthy Autistic child (which I have) and a dead child (which I almost had) there was no contemplation on my part, even given the suspicion I have that the MMR shots both I had whilst pregnant, and Chris had at the age of one, caused his Autism.

Alex was rendered Deaf during the course of his surgery due to a prolonged period without oxygen. He is not Autistic. I wouldn’t hesitate to have him vaccinated again if it was called for.