Tag Archives: Paediatrician

When special interest turn deadly

29 Jul

I like blogging, you like reading!

I’m a bit obsessed with twitter, shopping and art! You really love football and Facebook!

Admittedly some of us over indulge our sense with our interest, we spend a little to much time tweeting or playing a computer game when we could actually be doing something much more practical. However, we are fully aware of this naughty bit of pleasure seeking and therefore find ourselves eventually applying some self discipline. A good example of this would be a person needing to go to work, they may want to stay home engaging in whatever it is they love doing but they understand that this won’t pay the bills (that is unless the work is their interest)!

As some may already know, little man has very intense interests and these are what one would refer to as a “Special Interest” when I write about little mans interest I struggle to find the right words, especially ones powerful enough to create a visual picture in the readers mine. For these reason I often worry that those who have such little understanding of Aspergers Syndrome and special interest, may only ever really compare this to that of the above.

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Today I’m going to try and change this by telling the story of my sons special interest! The intensity and love he holds for such a subject. The high intellectual knowledge which he has gained from self educating himself on every aspect this subject has to offer. The smiles & laughter it has created as well as the comfort and sanctuary it has given him.

Yet as great as the above may seem like everything there is a downside, and like most things associated with Aspergers Syndrome there is no in between!

The Little man happily unrolled the toilet roll around the entire house, he was making tracks for his invisible bus to drive along. Little man was that invisible bus. He could visualise this as long as he had one or two props to create a front and back to his bus. He would use a spoon held in one hand for the front, and a pencil in the other hand to create the back! Let’s not forget the sunglasses he would use to recreate the motion of the doors a long with the continuous beeping sound he would make. He would walk around and around for hours, speaking in a monotone voice as he recreated the destination announcements heard on both trains and buses.

I would feel a degree of anger when people stated a child like mine lacked imagination skills. This needed expanding on so those who had no idea began to gain a better understanding. Yes, little man played the same game over and over again. He was mimicking something based on fact not fiction, yet his creativity was seen when he used imagination to think outside the box. Rather than play with a toy bus, he was the bus! How many children would think to use a spoon, sunglasses and pencil in such a way?

From the age of around 2 Little man started to show an interest in transport. This started with Thomas the tank engine, but having quickly discovered the fiction that surrounds Thomas he turned his attention to the real deal. As he grew he would try to suppress his interest within the school setting making them much more intense once home. His great love for the subject meant it was hard to engage him in anything else. There were many sleepless nights, it’s easy to turn of your child’s computer and demand they go to bed, but I was unable to demand little man switched of his mind. He would go to bed and just lay in the darkness randomly running through bus and train timetables and destinations, often beeping and recreating the motion of the doors with his hands.

Despite the late nights, constant transport chat I embraced little mans interest! When he wasn’t allowed on school trips we had our own at the London transport museum. We took random bus rides around the city and went to toy fairs in search of old rare models. But when things become very bad at mainstream school I noticed Little man becoming completely lost in his world of transport, the only place he felt safe! When excluded from school he would sit studying the various routes of trains, tubes and buses, he would not answer when called totally ignoring request whenever I made them.

Bus trips were no longer fun, he’ll police the bus, demanding passengers picked up any rubbish they dropped or removed their feet from the seat in front of them. On trains he would jump from his seat every time the train came to a stop, pressing the button to open the doors for those passengers getting off and on.

I also noticed that he would continuously slide open and shut his wardrobe door that featured a sliding door. The banging was hard to cope with especially come 3am when siblings were sleeping.

What worried me more, was the more emotionally stressed things became, especially within school, the more he would confine himself to the bedroom where the slamming would commence.

We eventually had an appointment with his paediatrician, we were currently in the middle of a discrimination battle with school. I had now removed Little man from the mainstream setting but was still looking for a special school willing to take him. The stress upon the family was apparent. It was during this appointment that little man discovered that the windows within the paediatricians office were of the sliding type. Of course he couldn’t resist to play with them and for this reason the paediatrician was able to see just how obsessive his interest had become. She wisely informed me that this was not only due to his very intense special interest but also a stress reliever, coping mechanism. We also elstablised that to a certain degree the repetitive sliding motion of doors or hand mimicking was a sensory seeking behaviour too.

It was only on this appointment did we discover how serious this was. A practice fire drill went off, little man is very bad with the high pitched noise one makes. He panics and becomes very unpredictable so when he didnt even look up, just carried on with the window I knew Little mans special interest was now deadly!

A plan was put together and I was given the hardest task of my life, to reduce and limit the amount of time little man spends on his interest. OK, I couldn’t switch of his brain but I would need to limit the other activities, especially the sliding of the doors. It was hard to be consistent! In many ways I felt half to blame. I had encouraged his interest but this is what I was always expected to do, it was always said to be a good thing! I don’t feel guilty anymore. I now understand that it’s important to support and encourage your child’s interest, what happen to little man was not my fault.

As the stress faded, once he found his perfect school, things did start to return to a more acceptable level. Now he likes Lego too and even stranger WWE wrestling has actually become his interest of choice. Yes he still likes transport but WWE is his special interest and in my opinion it’s a welcome change after 10 years.

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#HAWMC DAY 25 – D-DAY

28 Apr

That day was here, it had finally arrived. She put on her coat, took a deep breath as she closed the door behind her.

Sat at the bus stop a thousand thoughts bombarded her brain, she developed a list of endless questions storing them safely to the front of her mind. Boarding the bus she knew it was almost crunch time. 

The child & adolescent mental health centre was a modern building boasting floor to ceiling windows that had been brightly stained in an array of colours. She sat staring at the rainbow of colour the suns ray had projected through the coloured glass onto the cold tiled floor only to have her trance broken with the calling of her name.

Looking up she recognised the woman stood before her as the Child Psychologist who along with others, had sat for hours observing the behaviours of her then 9-year-old son. 

The Psychologist smiled, though it was one of those awkward half smiles with her head slightly tipped to one side her whole expression cried sympathy!

“How are you?” she asked as they headed for the elevator! She responded by smiling gently while nodding her head and stating “Yes, I’m fine thank you” This couldn’t have been more dishonest! Her life seemed no less than a giant mess, her eyes alone expressed the story of sleepless nights and utter worry.

A weird, awkward moments silence commenced for what seemed like minutes though in reality it was only seconds when finally the ding of the elevators doors rang out. Stepping out of the elevator the Psychologist turned and with that same tilted head and half smile, asked “Are you ready?” 

She was as ready as she’d ever be, for no amount of time could ever prepare her for this day. 

After a short walk down a brightly lit corridor they came to a door, it was on the other side of that door that answers await, the answers to the question she had asked some two years before!

Entering the room they were greeted by a whole host of professionals, each on armed with a clip board, a glass of water and that same tilted head and half lit smile.

Taking a seat she felt her whole body tense, why did she suddenly feel this way? Looking at the tissues the Psychologist had now placed on the middle of the table right before her, she asked herself “Do they expect me to cry?”

After all why would she? 

It had been more than 18 months since that first appointment, her son had seen every single one of these specialist and more besides, almost all giving the same conclusion following observation of his behaviours! Yes, if it wasn’t for the mix up, the mistake of a closed case following a silly mixup in paper work, she was almost certain this day would have come long go.

After that first appointment and first drawn conclusion with a child Paediatrician she had gone home and researched all there was to know on the topic and therefore realised that yes the reality of what that Paediatrician had told her was in fact more than a possibility!

So… why in god’s name would this woman now cry?

There was a whole lot of words, words that went in without being fully absorbed. Each professional adding their view on what support her child would likely require, what this involved and just how to go about getting it!

Then a pause… 

Here it comes she thought!

Looking at the psychologist she concentrated on the movement of her lips as she said them words…

“So, we are all in agreement that the most suitable and fitting diagnosis for your child is that of… Aspergers Syndrome”

It wasn’t a shock… as mentioned the possibility had always been put forward.

As his mother she had taken it on board and adjusted her way of thinking when it had come to parenting her son, she already considered him a boy with Aspergers.

So… why did she find herself reaching for the tissues?

She didn’t cry through sadness, she cried because it was suddenly all so real, so official! With the diagnosis also came a certain degree of relieve, a reason for her child’s uniqueness. She could stop blaming his meltdowns or difficulties on that of her own parenting, school could stop shaking their heads and finally wake up to the fact that this is real and not an excuse.

Silence

Then…

“Do you have any questions”

Of course she did, she had that whole long list that she had readily stored at the front of her mind!

So… why could she not think of one to ask?
 
 
It’s been over two years and this woman has come along way. Like any family they have good days and they have bad days. She embraces her child’s uniqueness and encourages parents of newly diagnosed children to reach out to one another, sharing the message…
 
YOU ARE NOT ALONE!    

But do you know what?

She still can’t remember that list of all important questions she stored so safely in the front of her mind!

 

Post 25/30 in the wego health #HAWMC

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