For the final #HAWMC we were asked to create a word cloud for our health focus. We were directed to a site that would create a personalised cloud for the words that we feed it, but I decided that I wanted to share a few clouds that I’d already created in the past.
So, without delay here they are
Thanks to everyone who followed my post on this awesome 30 day challenge (I’ve really enjoyed it)
All 30 challenges have been set by Wego Health
Firstly I should state that the #HAWMC (Health Activist Writers Month Challenge) is well and truly over. Although I wrote my last two post at the end of April this is however the first real opportunity to post them.
Post 29/30: A six sentence blog post
Life can be difficult & tiresome, yet rewarding in many ways.
Using the power deep within, we somehow convert the difficulties into positives and with that we grow stronger.
When it comes to our children we’re fight you to the core.
We will climb up any Mountain, swim any Ocean.
We would go to the ends of the earth and back if we had to.
Because we love them and nothing will ever change that.
Post 29/30 in the #HAWMC set by Wego health
As I continue on my mission to catch up and complete these last few posts in the “Health Activist Writers Month Challenge” (#HAWMC) I bring you post 28/30
The smell of heated milk and burnt toast isn’t a pleasant aroma, sadly it’s one that will never be forgotten.
I do hate hot milk, I often wonder why anybody would want to pour the stinky stuff over a bowl of cornflakes?
Now, Cornflakes with cold milk… It fits, some things just fit!
Well, it seems that most would beg to differ as on this particular morning the horrid smell whiffed through the air, unfortunately waking me from a somewhat restful sleep!
Sitting up I looked around in a somewhat confused state. “Where am I?” was my first thought, shortly followed by my second thought… “What the hell is that awful smell? Oh my god I’m going to be sick”
I was an 11 year old child who swore that it was that nasty aroma of milk and burnt rubber toast that was to blame for her sudden sickness (some 19 years later I still believe it to be so). However, the doctor with the serious expression upon his face, that stood beside me was quite adamant that the lethal cocktail of prescription drugs I’d willing subjected on my young body, or maybe even the actions needed to remove them was possibly to blame!
Yes, as you may have guessed already, I’m in hospital, a bed in a side room of a colourful children’s ward, walls sporting an aray of children’s drawings and a playroom that was never open!
Looking down at my bruised, tender hand that is connected to a Intravenous line full of saline solution, I shudder at the sight of it, thankful that I have no memory of how it got there!
My mind is a foggy haze, doctors and nurses come and go, reading notes and taking vitals. Each smile but say nothing… Me… I’m to afraid to ask!
As the day commences, a flash of memories greet me, waiting for my mother I feel the need to hide or just run away. “Why did I do such a silly thing?” was something I repeatedly asked myself over and over again… each time I produce the same answer… “I don’t know!”
A moment of madness, an escape, a cry for help, a way to take it all away maybe?
I couldn’t look my mother in the eyes, her face was full of sadness possibly disappointment too, while mine was full of shame.
They wouldn’t let me leave the hospital despite my constant pleads to go home. I had to see a psychologist before it would even be considered.
The psychologist was the very first person (excluding that of myself) who asked me… “why did you do it?”
I’d successfully avoid the question the entire day, I stared blankly into space, lowering my head a tear leaves my eye roles down my cheek before finally dripping from my chin falling to the ground like some leaky tap that needs fixing. Scared they would lock me away I open my mouth yet no words come out. Looking up at his face and into his eyes I wonder what it is that he is thinking.
“I dont know” I suddenly mutter
Silence… Then…
“Well, Do you wish to die” he asked
I quickly shake my head a little uncomfortable with the question.
“No I don’t”
More silence… Before finally covering my face with my hands I let it all out. Once I no longer needed to see that look of sympathy in his eyes I just couldn’t stop speaking!
Rising up from his chair he leant over and removed my hands from across my eyes.
“It’s OK” he soothed… “Everything is going to be fine”
Post 28/30 in the health activist writers month challenge was to raise awareness for Child mental health (OCD and Bulimia)
Photo credit Wikipedia
Now admittedly I am writing post 27/30 in the “Health Activist Writers Month Challenge” (#HAWMC) some 5 days overdue and yes I still have 4 more post to write (this one included). As its now May, a brand new month, technically the challenge has come to an end but come on, cut me some slack here! Mother of three demanding little monsters and them monsters come first. However, having come so far and not being a person who gives up on things easily I am determined to see the challenge through to the very end!
So… The 27th challenge was to give my top 5’s. These consist of the top five things I find most difficult as a parent of a child with Aspergers Syndrome as well as my top five victories (the things that kept me going when things got tough or the battles we over come)!
Now having bashed my tired brain for a while, I finally compiled a list for each, broke it down to the required number, explaining my reasons for each.
Things I find most difficult
1)Sleep: Yep, it has to be the total lack of sleep! Yes, this is more difficult than the meltdowns, swearing and black and white thinking style (such a thinking style can create problems). I often state that I’m used to the crazy sleep pattern that has been part of my life for donkeys years and as a result I’ve adapted my body clock, but in all honesty, despite this being true it really doesn’t make it any easier! Some days I’m fine where others I’m seriously having a hard time dragging my own arse around the entire day. I snap more easily, cry at day time TV and not really dig the huge black bags that dangle under my eyes most days.
2) Anxiety: Little man can become extremely anxious about the “smallest” of things. He can get so worked up that he loses himself in a thick fog of panic. Little man needs lots of reassuring when his like this! He may ask the same thing continuously, take many trips to the toilet and pace about loudly speaking to himself. His even been know to quite literally worry himself sick!
3) Discrimination: This is not a trait but something that comes with this diagnosis and many others besides. Discovering that those that are meant to do the best by your child, are actually treating him in a way that sees him extremely disadvantaged to that of his peers, is a terrible thing to witness as his mother! The fact that my child starts to become aware of this treatment, makes the situation one million times worse.
4) Days Out: These are meant to be enjoyable but yes, I do often find day trips and holidays quite stressful as does little man. This sometimes restricts our options, if deciding to embark on any spontaneous trips I need to do so at my own risk. Nonetheless, good planing and preparation is the key and combined have resulted in some good days out with little problems.
5) Meltdowns: As if these acts of built up exploding stress wouldn’t make my list… Of course they would! What can I say except who really wants to deal with screaming, swearing, crying and violence! But above all else the most difficult part of parenting a child with Aspergers is actually having to see your child become that overloaded and at times not being able to make things better for them! No mother wants to witness they’re child in this state.
Victories
1) Diagnosis: This itself is a victory, as to finally have that label actually opens more doors to services and support. I’m not starting you no longer need to fight for things, but without that label you have even less chance of getting anywhere.
2) Results: Having fought some almighty battles to obtain everything from acknowledgement, respect, suitable education, fair treatment and more, I can tell you it really isn’t easy! You discover that those you put your trust in are those you may need fear most! It’s tiring and at times you feel like just throwing in and trowel. You don’t, you just keep going and when the good finally happens its the most amazing feeling ever!
3) Progress: Watching the progress my son has made since attending an independent special school is wonderful! When your son goes up 7 reading levels over a few terms you know you made the right choice.
4) Rewards: Every time my little man receives an award at school whether it’s for improvements in behaviour or that of his learning progress, I’m overly proud. Of course I feel the same for my daughter, but these are things little man never received in mainstream and it’s lovely to see how such achievements rebuild his fallen confidence.
5) Inspiration: The inspiration my child’s diagnosis has given me to bring awareness and support to other parents of newly diagnosis children.
So, there you have it, my little list of 5’s.
This post is 27/30 in the #HAWMC
Challenge 26/30 in the #HAWMC is to create a tag line for your blog or health focus and to ensure it’s catchy.
I’ve already got a blog tag line, “A Boy With Asperger’s – The life of a mum of three one with Aspergers” This is perfectly suitable as it’s an accurate description of my blogs overall focus, it’s about a parents journey of discovery, a type of written documentary if you like. I want it to highlight that I’m a parent of three children all with different personalities, yet have this added focus on Aspergers as to bring some awareness and connect with those who can relate to our family situation.
If I was to create a tag line that solely focused on the health aspect it maybe a tad misleading, after all no two people with Aspergers are the same.
But then this blog isn’t about them, it’s about my son, my boy with aspergers….
So here it is! I could add a million and one adjectives for this tag line but keeping it short and sweet, here’s what I came up with…
A boy with Asperger’s
Unique yet quirky, driven & intelligent, wonderfully different
Post 26/30 in the wego health #HAWMC
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!
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
The 24th challenge in the “Health Activist Writers Month Challenge” (HAWMC?) was to create a health mascot for our health focus! I found this a bit of a strange one, but hey this is a challenge so who am I to argue?
I guess I’m therefore going to have to come up with something and considering that this blogs main focus is about parenting a child on the autism spectrum, this is what my health mascot must represent! Nonetheless, as I write this I have no clear indication where this is heading or what my health mascot even looks like (despite thinking about it the entire day)!
Long Pause…. Seriously it’s been 30 minutes or more and I’m only just about ready to write the next paragraph.
OK, so after lots of pondering I’ve decided to go with something quite mystical and beautiful that for many represents a number of different things… An Angel! Now I almost decided upon the Archangel Michael, an advocate, defender & protector. He is said to have fought many battles and I guess that’s something us parents of autistic children do too. However, I am not an overly religious person and Michael has been portrayed in an array of different ways within an array of religions.
Guido Reni's archangel Michael (in the Capuchin church of Santa Maria della Concezione, Rome) tramples Satan (Photo credit: Wikipedia)
This for me isn’t about a religious figure but one of strength and power, a mascot for my health focus would need this and more besides.
I’ve always had a bit of a thing for Angels and this often comes out in my artwork, so regardless of my decision not to go with Michael, my mascot would still be an angel, only one I have created from the inner depths of my overactive imagination!
Many people feel that Angels are something of messengers, which is exactly what my Angel would need to be. As a mascot for autism and aspergers my angel would do the work needed to raise awareness and combat the crawl ignorance that surrounds these conditions by delivering the message of awareness.
My angel would shine a light on those that failed to understand, wrapping them in his wings he would open their minds to a greater understanding.
My angel would bring justice and fairness, ending the discriminating ways of those we have been made to put our trust in. My angel would promote equal opportunities for all, regardless of disability.
My angel would see that our children received the education they are entitled to, that they were pushed to their limits in-order to achieve their dreams.
My angel would not change those with the condition, he’d change those without. My angel would open their eyes and therefore open their minds to the world we currently live in.
My angels spirit would seek to protect the most valuable children whatever their diagnosis and protect them he’d do well!
Artwork created by me
Post 24/30 in the wego health #HAWMC
There’s many things we forget, the simple things such as the milk when we go shopping or a recent doctors appointment.
Sometimes though we do forget those bigger important things which normally relate to our own wellbeing.
When asked to create a post it note reminding me of something I need to remember I thought why not make it a real important message (or should I say important three messages)!
Whether parenting children with additional needs or not, this is something to many parents are guilty of.
It maybe due to the fact we feel to tired at the end of the day to do a little something for us, whether that’s reading a book or relaxing in a hot tub full of bubbles for 1/2 an hour we normally end up to shattered to move from the sofa, falling asleep in our clothes instead.
Sometimes it goes a little deeper, we just don’t feel to good on the outside so feel crap on the inside. I have this problem often hence the reason I’ve included it here.
We all need a little kick up the back side sometimes and when things get tough, normally all at the same time, we tend to find it a little hard to stay positive!
However, to stay positive helps us stay more relaxed and able to see the bigger picture. I remind myself to stay positive every time I’m in a situation that causes me anxiety and as I have a few on the agenda I’ve included the message here.
Why? Because when you smile the world smiles too (or so they tell me)!
Post 22/30 in the wego health #HAWMC
They look and they stare as if they just don’t care
Laugh and snigger it’s too much to bear
He screams and he shouts as he punches the air
I feel like running when I see it coming
Where’s the support, why are they laughing… never seen a grown boy barking
Disconnected from others, fall of anger and fear he runs it’s no fun to chase him about as his mum
Senses heighten, emotions they do flow
Tears and panic it’s so hard as his grown
Meltdowns so hard for all those involved
ignorance much harder
if only they did know!
The 21st prompt in the “Health Activist Writer Months Challenge” (#HAWMC) set by wego blog was to write a Health Madib Poem. You visit the site feed it a loads of words and it generates a poem but I found it useless, nothing made sense and to alter it there seemed Little point as it would be easier just to write my own, so that’s what I did. 🙂
Post 21/30 in the wego health #HAWMC
The 20th #HAWMC prompt was to come up with a cure for your health focus. The only thing was, I didn’t need a cure for my health focus! Yes, there is plenty of things I wish that I could make that bit easier for my son who has Aspergers Syndrome but I wouldn’t go as far as stating he needs to be cured!
With the above in mind I wondered what I’d write about instead, then it came to me… How about a cure for other peoples ignorance?
The majority of our society remains misunderstood when it comes to the autism spectrum. I hate listening to the remarks of others when speaking about something they lack a great degree of knowledge in. OK, ignorance isn’t always the fault of an individual, some just haven’t been exposed to autism, therefore not having any reason to discover and learn about it! Others are simply misinformed via the media or other sources.
Then we encounter them cases of wilful delusion, people who understand more than they care to admit but simply ignore it. Those that refuse to change a certain view or way of behaving regardless of how well educated they are on the subject. It’s my opinion that this kind of ignorance is often found within schools, you’ll find teachers that agree with the difficulties you state your child is experiencing yet fall to note the concerns or apply for extra funding so state there is no problems within school. From personal experience and through discussions with other parents of children on the spectrum, It would seem that many school who have a child on school action plus have failed to fully use its resources despite having received the funding so when it comes to you asking for a statement a school will sometimes discourage a parent from doing so advising them to leave it a few months and stating that there are one or two things they can offer in the meantime.
This is why many autism activist campaign for it to be made a requirement that all schools train and educate its staff in all of SEN and that of the autism spectrum.
You see, some people will claim ignorance to be immoral but how can one understand something if they haven’t been educated on? The fact that one person feels they have the right to judge another with little evidence to base their conclusion upon is that of ignorance in itself… after all evidence can only be formed if those collecting it look for it and therefore learn more about it!
I’m guessing almost if not all parents of a child with autism or aspergers syndrome have been on the receiving end of ignorance at some stage of their child’s life. The parent of the child who really struggles with everyday experiences such as shopping will know all to well what its like to be stared at and judged just by looking at their fellow shoppers! Yes, it get does get easier with time, sometimes I fail to even notice those stood around staring, the whispers or continuous head shaking motion and tutting sounds many make and though you know its there, some days you’re just to tired to care!
Nonetheless, Regardless of how accustomed to it one may become this is somewhat besides the point! People need educating but sadly you will always find not every ones willing to step forward and learn! Of course we can’t make people think before they judge, only they can do that. Plus we all do it in some form or another whether it’s in relation to autism, mental health or something else altogether. However, it will eventually still grind you down, OK, not everyday, but those that do are enough to drive you into a state of depression, insanity or both!
Parents of children who have only just received a diagnosis or even those of undiagnosed children can find ignorance much more difficult to contend with (I know I did back in the earlier days). What’s more ignorance can also be an extremely upsetting experience for the child on the spectrum, especially those considered more high functioning. Again I feel many assume that because it’s documented that children on the autism spectrum are in their own little world they therefore often disregard the child’s feelings simply thinking they lack the intelligence needed to understand.
Well its a fact, no one wants to be judged, especially when it relates to the way they bring up their children. The child with autism is often labelled a menace to society, the child heading for an ASBO by its 5th birthday… no one wants their child to be thought of in such a way! It’s this part that most parents find the toughest overall.
Of course we as parents can’t spend forever worrying what others do or do not think of us and I for one don’t seek the approval of society on how I parent. I don’t need to be told whether I’m doing an efficient job or not, I don’t seek any ones approval apart from that of my own. It’s took me a long time to be able to actually feel this way, yet there will still be those days I slip and break at a strangers glare or ignorant comment whether it’s in a week, a month or even a year.
So here’s my final thoughts to wrap this post up! Ignorance is actually a state of unawareness which can in fact be cured with a little bit of educating! Those that receive that education but chose to ignore it don’t only become intentionally ignorant but are also filled with a degree of stupidity. Bottom line… We don’t need to find a cure for ignorance because there is already one available in that of education! What we do need is a cure for stupidity to finally fix the problem!
Image credit to the fabulous Chato B Stewart who blogs at PsychCentral.com an activist for mental health who uses a bit of healthy humour within his work
Post 20/30 in the Wego Health #HAWMC
Check out my sister blog – Mummy of many talents
|
A boy with Asperger's 
Recent Comments