Tag Archives: meltdown

A World Of Anguish

5 Oct

CRASH!

The entire house seems to shake as my seven-year-old son screams and bangs his head on the hardwood floor. He raises his head to bang it again, but I reach him first. I have no idea what has triggered this meltdown, and right now, I don’t have the time to try and guess.

My son is long and lanky: he is far too big for me to carry, but I have to get him away from the hardwood. Yes, I know what the so-called experts keep saying. When a meltdown happens, you have to ignore it. Paying any attention to him while he’s melting down will reinforce the behaviour.

Yeah, well, while I’m ignoring the meltdown, my child could be giving himself a concussion. This frantic headbanging isn’t anything I haven’t already seen. There are so many dents in my drywall that the inside of my house looks like a giant golf ball.

I half-lift, half-drag my son into the carpeted living room. I grab cushions and blankets – anything soft that’s within my reach – and I pad our immediate surroundings to stop my boy from hurting himself. Using a technique borne of experience, I wrap my arms around him and use my body weight to keep him still, to keep him safe.

While all of this is happening, he is kicking and screaming. They are not screams of anger, but of frustration. They are the screams of a child who is locked inside his own head and cannot find the way out. He looks directly into my eyes, and his expression is one of desperation. I am reminded of a caged animal who wants nothing more than the ability to run free.

As I look at my beautiful child, as I see him in such anguish, I want to cry. I fight back the tears. I have to be strong right now. Later on, when this has passed, I will have my chance to cry.

In my mind, I start talking to Autism as if it were a real person and not merely the name of the condition affecting my son.

“Damn you, Autism. There are times when I don’t mind you so much. There are times when I am completely comfortable with your presence. Hell, sometimes I even like you. But at times like this, Autism, I hate you like you wouldn’t believe because of what you do to my child.”

My son and I lie there on the living floor for what seems like ages. Slowly, so slowly that it’s barely perceptible, the screaming becomes less intense. The weight of my body provides him with the physical pressure he needs to become grounded again. And eventually, the screams stop altogether and I can loosen my hold on him. We curl up on the couch together. The silence is punctuated by an occasional hic.

I look at my child’s angelic face and tenderly smooth my hand over his hair. His eyes are closed and I think he’s gone to sleep. But then he opens his eyes and a special look passes between us, a look that no-one in the world apart from the two of us would ever be able to interpret.

You know what it’s like, he says to me with his eyes. Sometimes you can see into my world.

Yes I can, my eyes say back to him. But it’s only because you trust me enough to let me in.

And secure in the knowledge that he is not alone, he falls asleep in my arms.

This week’s Indie Ink Challenge came from FlamingNyx, who gave me this prompt: Describe “that” look you got in a secret moment of knowing. That look that no-one in the world would understand and can only pass between you and “that” person. 
I challenged The Drama Mama with the prompt: Tell the story of a policeman who died in the line of duty, from the point of view of his eight-year-old child.

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Autism Meltdowns: Six Strategies For Helping Siblings

10 Sep

It is a scenario that parents of children with autism are confronted with countless times: the child melts down for no apparent reason while his or her brother or sister stands by helplessly, not understanding what is going on. Autism meltdowns can be particularly bewildering for younger siblings who may not fully understand what autism is or why the meltdown is happening.

The strategies that I am describing today are based purely on my own experiences. I did not read them on the Internet or get them from any parenting books. I learned these in the best way possible: from the School of Hard Knocks.

  1. When a child with autism starts having a meltdown, the primary concern should be for everyone’s physical safety. The child is going to lash out wildly, hitting or kicking whatever or whoever he comes into contact with. He may run around with no real direction and bang his head on objects or people. Children going through an autism meltdown seem to have superhuman strength, and there could be a real threat to siblings who are standing too close. Therefore it is imperative to ensure the safety of the siblings as early as possible in the incident. This can be accomplished by taking them to a different room and making sure they have enough toys or books to see them through for what could be a couple of hours.
  2. Siblings should never be punished while a meltdown is happening. This may seem intuitive, but it can be really easy to fall into the trap of yelling at siblings who happen to get too close while the parent is trying to deal with the autistic child. We are, after all, only human. If a child wanders up during a critical moment, we can have a knee-jerk reaction to yell, “Get away!” or “Go to your room!”  Doing this may make the sibling feel that he is somehow responsible, and that is not a burden any child should carry. A better strategy would be to ask the child to leave the room, promising that you will go to them as soon as their brother or sister is OK.
  3. Recognize that the siblings are not only bewildered and confused by what is happening, they are also in all probability deeply concerned about their brother or sister. In the scenario described above, where the sibling is getting too close, it may be helpful to verbally acknowledge this. Tell the sibling that you know how scary this is for them, that you know they are worried. This simple strategy will validate their feelings and give them permission to feel the way they feel, and it can go a long way to helping them weather the storm.
  4. When the meltdown is over, take the time to explain to the siblings what just happened. Talk to them about autism and how children affected by it sometimes have difficulty processing emotions or sensory overload. It is fairly common for siblings to start apologizing in the aftermath, worrying that something they did caused the explosion. They have to be reassured that this was not their fault.
  5. More often than not, the sibling is going to need some post-meltdown reassurance that their brother or sister is OK. Bear in mind that they have just been witnesses to an extremely intense melting pot of emotion. They may want to see or talk to their brother or sister. Exercise caution, because meltdowns that have passed can flare up again, but is important for you allow (but not force) interaction between your children.
  6. Reserve some time to spend exclusively with your autistic child’s sibling. It can be tough, being brother or sister to a child with autism. There are many times when the needs of the typically developing children are sidelined because of the special needs of their sibling. Meltdowns definitely fall into this category. Because of the nature of these explosions, parents have no choice but to mostly ignore one child so they can focus on the safety of another. When the meltdown is over – be it immediately or later in the day – that time should be given back to the sibling without autism. Read to your child, watch his favourite DVD with him, let him choose a game to play, or simply spend time snuggling with him.

Managing meltdowns involves so much more than taking care of the child with autism. We have to consider our typically developing children as well. Even though they don’t have autism, they are still children, and they look to us to protect and reassure them. Using these strategies consistently can help them develop their coping skills and enhance their relationship with their autistic brother or sister.

Do you have any tips to add to my list? Please leave them in the comments!

(Photo credit: http://www.flickr.com/photos/nicolesfromtheheart/4290444513. This picture has a creative commons attribution license.)

Autism Meltdown: Surviving The Storm

24 Aug

It all started when I turned on the light in the kitchen. My almost-eight-year-old son George sidled up to me and, as usual, said, “Turn off the light soon.”

George hates the overhead light in the kitchen, and whenever it is turned on, he glues himself to my side and repeatedly tells me to turn it off, like a stuck record. I am so used to this that I barely notice it anymore. I just carry on with whatever I need to do, which last night included unpacking and reloading the dishwasher.

Uh oh. The dishwasher. This is another source of extreme discomfort for George. He gets very anxious when it is open, and like a record stuck on a different track, he tells me over and over again to “put it back soon”.

This – the combination of the light and the dishwasher – was a precursor to the explosion that would happen later in the evening.

I was probably not helping, at least, not at that point. I was in an agitated state of mind, having just come home from a stressful workday. I was multitasking too much, juggling about six tasks simultaneously, and getting stressed because neither of the kids would eat their dinner. I was frazzled and fraught. There is no other way to put it.

The explosion gradually built up throughout the evening, and finally erupted when George turned on the kitchen tap and found the water hotter than he expected. He screamed in outrage and started running around in a panic. I caught him, and using an expertise borne of experience, I used my body to restrain him from thrashing around and hurting himself.

I determined that he was not burned or injured, and sat there wrapped around him while he screamed. And screamed and screamed.

It has been a while since George had a meltdown this bad, but I knew that there was not a thing I could do to diffuse it. This was going to last for as long as it lasted, and we were just going to have to ride it out. Fortunately, my husband was home, so I had someone to tag-team with. One of us would stay with George, while the other would comfort our younger son James, for whom these meltdowns can be mysterious and frightening. Every thirty minutes or so, we would switch kids. Anything else that either of us had planned for the evening was abandoned.

After two hours or so, George finally started winding down. My husband and I cautiously allowed ourselves to breathe. He went back to the work he had been doing on his computer, and I went into the kitchen and made a cup of tea. I got the kids into their pajamas and gave them their bedtime milk. Because they were both still unsettled, I allowed them to chill out on the couch for a while before going to bed.

The period of relative calm turned out to be the eye of the storm.

The dishwasher had been running in the background without anyone paying attention to it. George, with his super-sensitive ears, heard the quiet click that heralds the end of the dishwasher’s cycle, and just like that, he was off again. For another hour, this poor child was experiencing an emotional storm that I felt ill-equipped to help him weather.

The worst part of all this was not the screaming. It was not the panicked running around and frantic scrabbling with the dishwasher. The worst thing by far was the look in George’s eyes. He kept looking directly at me, trying desperately to communicate – something. If the eyes are indeed the window to the soul, then my son’s soul was frustrated, unspeakably sad, desperate – almost tortured. It broke my heart to see him that way, to see him in such obvious pain and to be unable to help him.

Much later, when everything was finally quiet and when the entire household (sans me) was asleep, the question of why kept running through my mind. What happened to trigger the worst meltdown we’ve seen in about a year? Could the light and the dishwasher have suddenly morphed from a source of anxiety to a source of full-on panic? Was the hot water just too much for him to handle? If I had not been stressed and agitated, would the situation have escalated to such an extreme degree? In an interesting theory offered by my mother – one that resonates with me – could yesterday’s earthquake have unsettled George and made him more susceptible to stress?

As with most things autism-related, there are no definitive answers. Every question just spawns more questions. All I can really do is go with my instincts and strive to be the best mom I can be.

(Photo credit: http://www.flickr.com/photos/powazny/3782692376/. This picture has a creative commons attribution license.)

Things Are Getting Hairy

19 Apr

You know that your wedding planning is entering its final stages when you start using Flight Tracker to see where in their journeys your out-of-town guests are. As I type this, my Mom and my brother are en route from Johannesburg to New York (a brutal flight that keeps you cooped up in a plane for 18 hours – I do not envy them). I will see my Mom on Thursday; my brother will arrive in Toronto from New York next week.

Things are coming together. There is still a lot to be done – so much so that thinking about my to-do list puts a knot of anxiety in the pit of my stomach – but most of the little crises that have arisen have been resolved.

I have not had a nervous breakdown. I came close last week, though.

It was all about the hair. I had booked a hairdresser to come to my house and do hair for myself, my maid-of-honour, the bridesmaid and the flower girl. To be fair, the hairdresser had told me ahead of time that school commitments might get in the way and we might have to make other arrangements. That was a chance I took when I booked her. And sure enough, she called me a short time later and told me that she would not be able to help out.

I got in touch with another hairdresser, one whose rates seemed reasonable. The problem was that every time I spoke to the guy there, I was given a different quote. Each quote was progressively higher than the previous one. Eventually Gerard spoke to the guy, and he was given a much higher price than anything I had been told.

It was clear that we could not use this hairdresser. At this rate, we’d have to sell our house to pay him by the time the day of the wedding arrived. What this meant, though, was that with two weeks to go, I still had no hairdresser.

Any woman would agree that hair is kind of important on a wedding day.

I lost it. I started to have this weird little meltdown, ranting to anyone who would listen about how I was never going to find someone to do my hair, and how I would have to persuade my makeup artist to wing it and do it for me (this was before the makeup artist bailed on me with no warning).

Gerard was trying to calm me down but I was just so stressed. I was making these high-piched supersonic noises that only dogs can hear.

Gradually, the pitch of my voice lowered enough for my noises to loosely resemble speech. I was tearfully saying stuff like, “My hair is very important, you know.”

Gerard, in a kindly and patient tone, said, “Of course it is.”

I think he was doing that thing where you agree with everything a hysterical person is saying, no matter what. I could have said that mulberry trees were falling out of the sky, and he would have agreed with me.

In the end, Gerard told me not to worry about it. He said he had a plan to make it all better.

Sometimes, when Gerard tells me not to worry, I have the sense to trust him. This was one of those occasions. And true to his word, by the time I got home from work the following day, he had found and spoken to a hairdresser. The day was saved. Relative peace could reign once more.

Despite earlier threats to shave my head and put a tattoo of a butterfly on my scalp, I will be able to walk down the aisle with beautifully styled hair.

It’s a good thing. That tattoo would have hurt.

(Photo credit: http://www.flickr.com/photos/25559122@N06/3811393733/)

Spectrum Musings

10 Mar

Sometimes I wonder if George got his autism from me.

I don’t say that with any sense of guilt. If he did get it from me, I don’t feel bad about it. After all, I can hardly be held responsible for my genetic composition. It’s not as if I had any control over what DNA I landed up with.

I wonder about this question, though, from a purely scientific, curious point of view. Because although I’ve never been screened for it, it would not surprise me one bit if I were to learn that I am on the autism spectrum.

When I was a baby, I cried. I know, that sounds like a ridiculous statement. Of course I cried. That’s what babies do. In my case, however, I couldn’t be soothed. My poor Mom would change me, feed me, rock me, try to get me to sleep. No matter what she did, I cried relentlessly, for hours at a time, for no apparent medical reason. Mom surmised that maybe I was reacting to a feeling of  rejection after my birth mother had given me up for adoption.

Adoptions in those days were closed, and no information was exchanged between the birth mother and the adoptive parents. My Mom knew nothing about where I had come from. She told me in later years that she just assumed there was some factor she did not know about that was causing all this angst in me.

When I was a very young child, it became apparent that I had notable developmental delays. I was a very late talker, and did not show signs of functional speech until the age of five. It took me a lot longer than my peers to learn how to read (although it must be said, once I did learn, it was like a floodgate had opened, and I read everything I could get my hands on).

At the same time, I had issues with motor skills. I was uncoordinated, and stubbed my toes a lot. I did not have the strength to hold a pen, and I didn’t even know, until some species of therapist did some testing on me, that I was left-handed. My hand-eye coordinatin was nowhere and I had to be taught it while other kids seemed to just pick up on it naturally.

There are certain sensory things that I find hard to handle. Flickering lights (although, to be fair, that would probably drive most people batty). The textures of certain foods. Clothing labels have the ability to make me want to chew off my own arm in frustration. When Gerard has the TV on too loud, I actually want to scream. Hearing too many sounds from too many different sources (TV, dishwasher, telephone, whatever) invokes a feeling of intense anxiety.

When I’m stressed I rock back and forth. I find it calming, I find that it can sometimes stop the stressful feeling from escalating.

One of the most telling factors in my musings, however, is my social awkwardness. I have had this problem throughout my life. As I get more comfortable with specific people, my social ineptness becomes less apparent, and I work hard to hide overcome it in my day-to-day life.

Social gatherings can be excruciating for me. High school was just torture – I so badly wanted to fit in, but I couldn’t be social enough and my attempts came across as awkward and embarrassing. The only person at school who I felt completely comfortable with was my friend Jenny, who remains my best friend to this day.

There are certain social situations that make me feel even more uncomfortable: conflict, meeting new people, situations where I unexpectedly have to make small talk, anything to do with telephones.

Gerard has remarked several times that I seem to have a special connection with George. When he is having a meltdown, I seem to have the ability to just know what to do, to know what he needs. It can take a long time to calm him down, but in most cases, I can just know – without explaining how I know – how he needs to be spoken to, held, comforted, soothed.

And I wonder why this is.

Is it a normal motherly instinct?

Or do I, in some ways, inhabit the same world George does?

(Photo credit: http://www.flickr.com/photos/53416677@N08/4972850923)

Vaccination Vaccilation

8 Mar

Several weeks ago, I got a letter in the mail from Toronto Public Health, informing me that if George’s vaccinations weren’t brought up to date, he would be suspended from school. There is a series of shots that he was due to receive when he turned six, and due to a number of logistical factors, including the retirement of our doctor and George’s phobia of anything medical, we just hadn’t gotten around to getting them. I called the number listed on the letter and spoke to a very nice lady who told me that the six required vaccinations could be administered with just two needles.

While two shots certainly seems more manageable than six, we have still not been able to get this done. Since our doctor retired, we have still not been able to get another one. There is a dire shortage of doctors in Ontario, much less doctors who are good with children who have autism. There is a walk-in clinic that we’ve gone to frequently enough for them to know us, and they do carry all of the vaccines, but it’s one of these first-come first-served places.

Jabbing needles into the arm of my child with autism is something that requires epic planning. We would have to find a doctor who we could make an appointment with. We would have to secure the very first appointment of the day to guarantee no waiting. We would have to prepare George, ourselves, and the staff at the doctor’s office. The whole thing would have to be done much like a military strike: go in, do what needs to be done, and then leave.

You can’t do that at a walk-in clinic. There, you show up and wait your turn, which could give your child up to two hours to have a complete meltdown and make dents in the drywall with his head (I ain’t kidding about that, by the way).

In between our phonecalls to locate a suitable doctor, we have been doing research on vaccines.

I should say at this point that I have never believed in the connection between autism and vaccines, and I still don’t. Whenever I admit this within my autism circles I create a bit of a stir, because it would seem that most people do not agree with me.

I would never presume to speculate on what does or does not cause autism in other peoples’ children, but looking back, I knew that something was not right with George from a very young age, before vaccines even entered the picture for him. If I were to guess at the root of the problem, I would say that it is a genetic roll of the dice combined with certain dietary elements.

Much to the horror of many parents (whether they have children with autism or not) I chose to vaccinate James even after I knew about George’s autism.  That’s how much I do not believe in the vaccine/autism link.

So the research we have been doing is not from an autism angle. It is from a general health and wellbeing angle. Some vaccines apparently (depending on which websites you believe) contain potentially toxic ingredients that really don’t need to be there. These ingredients can do things like challenge the immune system and create a propensity to getting mild upper respiratory complaints.

And as convenient as it may be, we are debating the wisdom of administering three vaccines per needle, all in one session. That is a lot of stuff to be putting into the human body all at once. I’m no doctor, but I’m not sure that the human body is designed to be blasted in such a manner.

We fully intend to get all of George’s shots updated. We may just take our time and spread them out. It will involve more trauma for George, but there is a chance that it will be better for his long-term physical wellbeing. When James turns six, we will have to make the same decision for him.

In the meantime, while we are waffling around trying to decide whether to get George his shots, the Toronto Public Health deadline is upon us. With just two days to go until imminent suspension, we decided to apply for an exemption. We completed a Statement of Conscience, which basically says that we believe vaccinations are not the right option for us at this time.

It just buys us a little time to do this properly, without pressure bearing down on us.

 

Mirror, Mirror, On The Wall

17 Jan

Before I go into the story of what happened last night, I should set a bit of context.  When Gerard’s Dad died almost eight years ago, we moved in with Gerard’s Mom, who at the time did not want to be alone. We live downstairs, she lives upstairs, and each of us has own own fully equipped kitchen and whatnot, so we can live completely independently of one another and yet still be in the same house.  For a while, things were kind of tumultuous, but now they have settled down and we are all getting along famously.

My mother-in-law – or future mother-in-law, if you want to get technical about it – is making my wedding dress.  The woman is a phenomenon with a sewing machine, and she is going to create something spectacular – far better than anything I would find in a store.  I am not even intimidated by the fact that my wedding is the day after the British Royal Wedding.  My dress is going to be much prettier than Kate’s.

Last night’s drama started because my mother-in-law and I needed a mirror. A full-length mirror that we could prop up against the wall in her sewing room, that would allow me to see the dress in all its full-length glory during fittings.

Gerard and I just happen to have a spare mirror.  I think it was originally part of some long-gone piece of furniture, and for the last three years or so it’s been propping up the wall in an impractical spot in George’s room.  No-one ever uses the thing, so last night Gerard took the mirror upstairs to the sewing room (after the work-in-progress that is the dress had been securely hidden away, of course).

To say that George got upset would be like saying Donald Trump has a little bit of spare cash.

The kid exploded.  This small change to his immediate environment made him go into utter meltdown.  He was frantically running around in circles, screaming, “Put the mirror back!  Put the mirror back!”  It wasn’t angry, tantrummy screaming.  It was the kind of screaming borne of frustration and anxiety.

You see, George doesn’t cope with change.  When the slightest thing changes – a lightbulb burning out, the laundry hamper in the wrong place, the cordless telephone not in its docking station – he gets really stressed.  A few weeks ago we thought our dishwasher was leaking, so we pulled it out to take a look, and this sent George into such a flurry that it was days before he would set foot in the kitchen again.

The mirror being taken away sent him right over the top, in a way that nothing else has before.  I’m guessing it’s because the mirror was in his room; that it was his own space being violated.  It’s not that he looks in the mirror, it’s just that he’s used to it being there.  And when something he is used to is taken away, it represents a wrinkle, an interruption of stability.

At some point during this wild, frenzied activity, George ran up to his Dad sobbing, and beseechingly wailed, “Put the mirror back, please!”  He turned and looked at me, and in his eyes I saw utter desperation and fear bordering on panic.

Some people might argue that we should have stood our ground, that “giving in” to George would set a bad precedent.  They might say that the only way to get George to cope with change would be to desensitize him to it, to expose him to change and weather the storm, no matter what.

But you know something?  Sometimes, it just ain’t worth it.  Nothing is worth seeing your child in that much pain and anguish. Gerard and I agreed that we would just pay twenty bucks for a new mirror, and he went back upstairs, retrieved the mirror and put it back in its place.  When the mirror had been restored, we picked George up from where he had been cowering on the couch, and took him into his room.  He refused steadfastly to look at the wall, but he must have seen the mirror in his peripheral vision, because that heartbreaking wailing came to an end.

At that point, the stress of what he had just been through must have caught up with him.  All of a sudden, he jumped up off his bed, ran to the bathroom, and threw up.  A lot.

I wanted to cry.  My poor beautiful boy was in such a state of stress that he actually threw up?  That is awful. Do you know how stressed you have to be for it to make you physically ill?  No mother wants to think of her child going through that level of anxiety.

I gently cleaned my son’s face and dried his tears, and then I turned out the lights and hugged him as lay in his bed.  Right before he drifted off to sleep, I asked him how he felt.

“Happy,” he whispered, as he closed his eyes.

That’s all a parent really wants for their child.

(Photo credit: Flickr Creative Commons Attribution License)