#HAWMC DAY 10 – Dear 16-Year-Old Me

Dear 16-year-old me…

Yes, I know you think it will be easy, move to Spain living the high life with your pals, pals that will actually be long gone by your 17th Birthday! Surprised?

You will be!

Do you think the world owes you little girl? It owes you nothing, in fact you need to brace yourself for the ride of your life, a roller coaster that will leave you clinging, one so fast and furious you’re not know if you’re coming or going!

Life owes us nothing and you’ll soon discover this!

Here’s some valuable advice to start you on your journey.

You’ll face some difficult times, ones that test your inner strength more than you’ll ever know possible.

You’ve already come so far, though metal health will always remain a big part of your life. Stop hiding from it, deal with it, life is far simpler this way.

You’ll continue your battle with OCD but as you grow, you’ll grow stronger and every now and then you’re realise how you’ve grabbed it by the balls.

You’ll become a young mum, but a good one. Your journey through parenthood wont always be an easy one but it will be an awarding one at that.

Your first-born son will be diagnosed with Aspergers Syndrome at age 7, you’ll use so much strength obtaining the diagnosis you’ll have little left to digest it!  

Remember, those who are meant to understand probably wont, don’t waste your energy trying to make them… take it one step at a time.

You, have so much to offer, though you don’t know it yet god has a plan, it’s a pretty good one too.

Eating disorders, anxiety and OCD, you’ll thing you’ve faced it all, only life has some surprises, you’ll get through them your strong.

You’ll discover that schools are not what you thought they were when you discover how the child you love is so cruelly discriminated against and at this point you’ll be gearing up for the hardest battle yet.

You’ll learn all there is to learn when it comes to special educational needs, but your determination will see you through it and this determination will then be used in the most powerful of ways.  

You’ll endure the heart breaking pain of losing a pregnancy and never meeting your twins, but you’ll be greeted with the beautiful toddler you have today.

By age 30, you’re the mother of three beautiful children and though life can be hard at times, you know your blessed with the most precious of gifts one could ask for. 

Oh yes, right now you hate to write, actually you loath it! The funny thing is, this will become your love, you’ll write everything, your life becomes an open book, one you hope inspires others… writing is what you now do, you even bag yourself an award for doing it so well.

Yes, little Claire Louise, I see you hold your tummy as you laugh yourself into a frenzy… just you wait and see!

Blog 10/30 in the wego health #HAWMC 

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#HAWMC Day 7 – The faces of shame

Pretty & slim I know she was, looking back I now remember! But the mirror didn’t lie, why would it?

No longer able to cope with the disgust that stared back at her she began to run, though not physically but mentally she ran!

Food the root of all evil, yet her only control, it’s predicability she feed from, the shame she hid from!

Trapped in a maze, unable to escape the high walls that surround her, she’s falls at each hurdle.

Tomorrow would be better was something she often told herself! it was her mind, she had control of it, it didn’t control her…. Or so she thought.

Deep down did she understand the dangers as her hair fell all around her, her beautiful white teeth crumbled like chalk as her young innocent body cried out to be feed?

I think that yes she did but somehow it failed to stop her. To far she had come, to now let her efforts go to waste and fail again!

Fighting her own mind, her inner voice won every time. The defeat taken badly… The battle never ending, inside she was dying a little more everyday!

To stop would now be a danger, seriously, it meant the lose of control and for that she’d be punished the worse way how! Her family would suffer, quite possibly die around her, how selfish that would make her!

Counting and checking dominating her young life almost as much as food, combined this lead to a somewhat complex way of life. One consumed with shame all at her own blame!

Laid in a hospital bed the mid-days sun shone through the cracks of the curtain, slightly lightening a darken room. Closing her eyes she failed to escape the faces of shame, fuck, it had all gone so wrong… It wasn’t meant to be this way!

This post is 7/30 in the daily #HAWMC set by Wego Health. The freestyle challenge is to raise awareness of child mental health, eating disorders and OCD.

#HAWMC Day 2 – A NOT SO INSPIRING QUOTE

There is one quote that quite frankly gets on my Nelly … “An apple a day keeps the doctor away”

Why is this even suggested? Who made this stuff up? Come on, seriously, I live in a country where it takes a month to even get a slot with your local GP let a lone a CAMHS Paediatrician (Child Adolescent Mental Health Service) who is there to assist me with any issues or difficulties relating to Little Man, his Aspergers Syndrome, Anxiety and a whole other host of issues! “So… Frankly, who needs some piece of fruit?”

Yes, maybe I shouldn’t take such old wife tales so personally, actually I don’t! I’m pretty much able to disguise between what needs to be taken with a pinch of salt and what needs to be absorbed as reality, though this isn’t the case for everyone… this isn’t the case for Little man.

This is a child who mostly sees the world in black & white, without the support given from certain therapies he may just spend his days indulging in an apple a day only to get that sudden bump to earth when he actually requires a doctor to come his way and will they?

The likelihood of actually chocking on one of these healthy daily snacks seems more likely and yes the doctor would still be “Away” just when you ironically need him!

Of course my point isn’t related to apples, well not as such, its about services, much needed services that parents like me and thousands of others physically need to fight for! We deal with the hidden disability, the stigma nestled between child mental health and that of neurological disorders… yet here we are still finding our child stuck on a waiting list, one that’s so long it’s not surprising that when you receive the much awaited letter, your child’s out collecting his P45 and your at Bingo.

So, as I sit and watch the UK slowly slip down the pan, as the coalition destroy just about anything in its path I wonder how we move on from here? I basically want to know why a man who promised a better deal to those with disabilities, their families and registered carers, is now doing what can only be described as his “Best” to kick us to the curb first, in his mission to take over the country acquiring himself one or two well deserved nick names a long the way? Is there a game plan, this is politics after all! Surly he doesn’t think that making yourself into this hugely hated figure within society will get you any brownie points in the long run? Is it plain to see that he didn’t receive my vote?

See, now I’m running of course….

The reason behind such a sudden “Pop” directed at the UK Government is for the same reason most find themselves ticked off! As a member of this society, I sure am sick of hearing promises that quickly find themselves forgotten and buried within some dusty old file in the house of commons! As a mother of a child with Aspergers and Special Educational Needs, who fought for a statement of sen only to fight for that same statement to be amended! A parent who has endured the battle for her child’s right to an educational placement that can meet his needs, I was bitterly disappointed at the proposed “Green Paper” and worse the lack of progress since (well, public progress)! Yes, the LEA and Health Authority will now work together, families will be able to access the services “they can’t access now” till their child becomes 21! Lets not also forget that both LEA support services and those provided by the National Health Service will become readily available, what with the change in the assessment process! Remember this is for the benefit of those with disabilities and their families, nothing to do with government cuts and quick fixes at the expense of the most vulnerable! It will all be perfect wont it! Everything will be so much more efficient & faster this way, you may even get a little respite if your lucky … Blah… Blah… Blah… YES, We’re all still waiting?

So, “An apple a day keeps the doctor away?” Um, NO! Broken promises, shabby money saving cuts, and politics, that my friends is what keeps that doctor away!

This post was written as part of the #HAWMC, 30 prompts, 30 days, 30 post (this was day 2)

Check out the wego health facebook page for more info and a whole load more bloggers talented bloggers  the challenge.

Failing to regulate one’s own emotions

I’m the type of patent who likes to embrace her son’s diagnosis of Aspergers Syndrome, though there are days, when I fail to focus on any positives, these long hard days filled with meltdowns, the explosive type, filled with rage and a good degree of violence!

Violence used to be a huge problem back when Little man was between the ages of 7-9 years old, however, with a lot of work we managed to get his explosive ways under control, and although he has always hit his younger sister, this become less frequent and manageable. I myself used to be his punch bag and with some two years since he had hit out at me, I thought this milestone had been well and truly achieved.

Since Little man turned 11 on the 1st October 20211, things have once more turned nasty and have progressively become worse since. Having seen the huge reduction of such violent and challenging behaviour outbursts over these past 2 years, their return has simply knocked me sideways and I’m completely at a loose on how to fix this!

His violent ways often spring without warning, leaving myself or his little sister in the firing line. Strangely, since leaving the mainstream school and receiving a full education alongside his peers, in a place he is far more happier, this violence has grown worse at home! he went through so much at mainstream, he was isolated, excessively excluded and sadly discriminated against, yet despite this he didn’t become violent towards me, though he did self harm on a few occasions! So why now? School life seems good, it is terribly frustrating that he is now in the right educational setting, yet another issue as serious and worrying as this should arise! There is no bullying and I know that he happy at his new independent special school, so why?

His not 7 anymore, his a reasonably sized 11-year-old boy who can pack a pretty impressive punch! This is a child who despite his nick name, ‘Little man’ is now almost as tall as myself! My son is now, taller, stronger and about to experience a flood of hormones… if not already!

Lately, meltdowns have been highly explosive, his jackle and Hyde personality takes over without warning and my usual tools of redirection that I’ve created over the years, are sadly little use, if any at all! The Switch in mood is so sudden that I now struggle to see it coming, I cannot decode a trigger, something I would have once described as one of my talents! I usually see the forming of a dark cloud building and as a result, I am often able to clear it quickly! Sadly once more, myself and his sister have become his target when frustration reaches its limits… I have found myself jumping in the path of his blows to protect my daughter and regrettable, just recently she tries to return the favour 😦

Thursday the 9th February 2012, Little man was sat at the PC, writing yet another one of  his business plans for when he reaches adulthood, a calm presence filled the air and everything was… well, fine!

Suddenly, Little man unplugs my iPhone which happens to be charging, I tell him this and politely requests he replugs it in to the extension lead, while reminding him he should ask if he can use the extension in the future! This didn’t go down well, shouting and screaming he tells me to F#*k off and plug it in myself as it’s my charger!  I actually did this in the end, as not to fuel this any further! However two minutes later and for no apparent reason whatsoever, little man randomly switches of the TV which his sister is watching! I ask why, to which he states, “if I can’t do what I want, she can’t watch TV” This was all the crap I needed! Already feeling quite unwell, as if a ton of bricks lay on my chest, I told him I wasn’t in the mood as I felt reasonably unwell, to which he continued to refuse. Getting up, I head to the TV , Little man runs off to which I presumed he was heading for the extension lead to once again remove my charger… Like this was now a game! Though actually, I couldn’t have been more wrong! Suddenly as the TV screen flicked on, I felt a pain fly up my back… No bloody way! Turning my head slightly, my fears were confirmed, stood behind me was little man who had just punched me in the centre of my back! Feeling so angry I ordered that he went to his room, now I know I should have persisted, but given the fact… my 2-year-old toddler was becoming increasingly distressed and I didn’t want my 9-year-old daughter getting hit, I scooped the toddler up from his chair and ordered my daughter to follow me to the bedroom where she could finish watching her film.

Little man would now stay out the way, downstairs and hopefully become much calmer, he could finish his business plan before settling down on the sofa or heading to bed! Again… could I have been anymore wrong? He followed us upstairs swearing all the way  and at one point he even beat the hell out of my bedroom door… AGAIN! Losing the will to live, I informed him, I’d call the school and see if they could help me fix this, he flipped out, telling me to stay away from school before once more setting himself upon me like some frenzied lion! I know that this was partly my fault now as he then felt threaten. Although I normally reframe from such behaviours, it should be understood that by now I was close to breaking point, tears quite literally streaming from my eyes as I tried to think of a way to turn the situation around.

It got to the stage where the little man needed to be carried into his bedroom, I must have incurred super human strength as I lifted him, ignoring the thumps and pinches, I placed him in his room making a bee line for  the door, though I wasn’t quick enough as I found myself being hit by a number of heavy flying objects. Before I knew it he had taken up to running at me inflicting an array of high flying kicks directly to my body, seriously consumed with anger, sadness and sheer frustration, I told him that if he laid another finger on me I’d call the police! Again this wasn’t the best choice of words because 1) He felt threaten, 2) I pointed in his face, 3) he kicked me instead… well, feet do not have fingers do they!

I  was actually now extremely exhausted by the whole experience that had been continuing on for some 2 hrs now, not being able to bear a minute more of this, I turned to leave the room when he gave me one final blow in my back which  just happens to be the act that pushed me over the edge, giving me an intense desire to hit him back (which I don’t do, and don’t want to do)! I spun around and instead of hitting him I began screaming the words “No…… more, please no more!” as I proceeded in kicking toy boxes that resulted in them flying across the room, I also found myself knocking books from their shelf… I had lost it! Suddenly there was silence… stood shocked little man stared through me, he then lowered his eyes to the ground and started to cry as he asked me, “Mum why have you done this?” Then he very cheekily said out loud, ‘ Mum, you really should control your anger’ He no longer chased me just sat scrapping Lego bricks back in their rightful boxes, I retreated to my bedroom only to surprisingly discover the toddler and his sister were now spread out across my bed sleeping! Closing the door behind me I sat with my back against the door, tears filling my eyes as I looked at my bruised arms and legs, I cried, not due to the physical pain but the emotional one, plus the uncertainty and unanswered questions left me feeling isolated and alone! Should I be calling the police, what would make him stop! I couldn’t allow him to grow up with this approach to a problem, it wasn’t a solution! I love him and have that understanding… What if he hit someone else who then turned around and battered him, would he be behind bars by his teen years or even fall in love and beat his wife! Consumed with worry and knowing it was my responsibility to avoid any of the above happening! I grabbed the iPhone and visited my A boy with asperger’s Facebook page where everyone was so brilliant helping me find answers, making suggestions or just giving me a virtual hug!

The house was now silent, looking around his bedroom door I notice his laid out on the floor surrounded by a mass of Lego, I quietly pick up what seems like thousands of Lego bricks, I then slip a pillow under his head and place a cover across his body, kissing his forehead I then turn of the light (they is no way, I’ll even try to move him, if he wakes it could be an even longer night than it has already)!

I didn’t sleep for the remainder of that night, a host of things crammed my mind inducing a type of dull headache! What now? We have asked for help, but what with a massive waiting list for a CAMHS behavioural therapist, an LEA that avoid me like the black plague, I’m running out of options! Is there any respite? No! Do I look like it would help? Of course! With a Government only interested in throwing money at the 2012 games, I sadly hold little hope, after all our family situation isn’t as important as a sporting event is it? Well, it’s not every year we host an oympics…. but it’s everyday I host a meltdown, so…. I guess we will have to wait, after all we’re good at that, wouldn’t you agree?

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Our worse ever meltdown & coping with little sleep

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I was going through documents I have stored on my Mac and came across this. I’m unsure of the reasons I wrote it, though I think it was meant as a guest post concerning “Meltdowns and a lack of sleep” I don’t even think I sent it to whoever was meant to feature it, so I’ve decided, instead of cluttering up my Mac, I’ll share it here with my readers.

The post comes in two sections, “Worse ever Meltdown” & “How I deal with the lack of sleep”

Our Worst Ever Tantrum

I have three children, a daughter of 9 and two boys! my toddler is 2 and his brother, my eldest is 11 years of age and has a diagnosis of Aspergers (a form of autism that results in impaired communication and interaction skills) and sensory processing difficulties.

My eldest, AKA Little man, has had more meltdowns than I ever thought possible! His increased anxiety levels and inability to filter out certain sensory stimuli has made meltdowns exhausting for all.

We’ve seen it all! Hitting, swearing, kicking everything and anything, throwing objects, slamming doors, running off and non stop crying! But nothing was to prepare us for that Wednesday evening on the 22nd September 2010. My son had received a high number of exclusions from his then mainstream school. He was taught in isolation, (Kept away from other children like a monster). My child was never allowed to attend school trips or participate in activities, this was lowering his already low self-esteem and I was becoming extremely worried. That evening I received a call from the head-teacher who informed me my child was excluded for the third time that month. I was promptly reminded that the Friday was in-set day (translated that means staff training day!) So, he would be excluded for the trip. He has missed trips for as long as I can remember anyone would think we were used to it! But this one was important he was looking forward to it so, so much because they would be going by coach (transport crazy) It was left for me to break the news and his heart. He didn’t hit me, nor swear, he sat deadly quite for a minute or two, slowly absorbing my words! Then shockingly he stood up and started throwing his entire body into the wall almost knocking himself out in the process. He scratched his own arms till they bleed, he slapped himself in the face over and over again and punched himself in the head while chanting, “I just want to be normal” Some five hours later, and a smashed up bedroom, I found him laid in the middle of the room amongst his destroyed beloved model buses. His eyes were so sore and red, his breathing still heavy that he continued to catch his breath. Yes, I’ve been hit, abused or embarrassed in public. His kept me up the entire night screaming and crying, yet it was defiantly this meltdown that outweighed the rest, It is one that has stuck firmly in my mind… Because for me it was scary to see a little boy, my little boy, react in such a way he could have seriously hurt himself.

Lucky his now in a more understanding school better suited to his overall needs.

Coping with little sleep!

I remember my health visitors promise some 11 or so years ago! She looked me in the eye and said, “I promise you he will soon get into a routine… babies always do”! Yet she lied to me, because that isn’t true is it! Not all babies do! My little man is no longer a baby but a lively 11-year-old boy He has Aspergers (a form of autism) and as soon as he hit three months old, he stopped sleeping! I waited and waited for that routine to come, the one she had promised, after all she was a professional right? Well, here I am, still waiting for that so-called routine!

We all need to sleep in-order to refuel our brains and boost our energy levels. I’ve often stayed awake for nights on end (which wasn’t done by choice)! When my little man does finally sleep, I struggle! Maybe because it’s only a few hours till I should wake for it’s a school day and I fear the attendance officer getting on my back, or maybe because I’m scared I wont wake to care for the children at all. I find I’m touchy and over emotional some days, where others I’m fine, I just get on with things the best way I can! Sleep really does make everything seem better, I just wish my son would believe it and give it a go sometime! I’m no super mummy and more often than not, after a few days awake I just suddenly drop! My eye lids become so heavy as if they have weights hanging from them! Seriously I find my self sleeping as I stand, clean, bath or even board a bus… which really isn’t a great way to be!

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Christmas Meltdowns, Supermarket Style

Anybody with a child on the autism spectrum will know that meltdowns are that bit different from your more ‘typical’ tantrum and that during this festive time of year they tend to be on the increase.

This is true for Little man, what with all those emotions mixed together, excitement, anxiety and more, there is just bound to be an increase in this behaviour, however knowing about it can make it that bit easier… OK, not that much but hey any improvement is better than no improvement isn’t it?

It’s extremely hard to avoid those things that make our children over stimulated especially when it’s the whole business of Christmas itself that tends to bring about such behaviour! Supermarkets are always that bit more crowded, then there’s all the festivities happening around us.

My Little man has never coped well with the whole shopping situation and I discovered last year just how much worse this becomes at Christmas! Seriously, there is no quite time to shop in December, nonetheless this is a good time however to try to raise some awareness for the condition and how sensory overload can play a huge part in our children’s behaviour! Just think about it, how do you feel when you’re darting around the supermarket last-minute trying to get all the bits for your Christmas dinner, everything is sold out, the place is bursting at the seams with other shoppers who are walking about at the pace of a snail and in the background you can hear people rattling charity tins as the local choir stood at the stores entrance belts out the sounds of “Ding Dong Merrily On High” yet there you are feeling a little less than festive when you’re in a rush and somehow no matter how fast you go… Nothing seems to get done!

Come on, we’ve all been there haven’t we? Well, I know I have and I’ll be honest when saying… It leaves me feeling bloody stressed out to the max.

Yes, we shouldn’t leave things till the last-minute but not every family is in a position to shop at the beginning of the month, myself included!

I don’t know 100% but I’m guessing this is how my son feels on trips to the local supermarket, just how I feel when christmas shopping at the last minute, so can you imagine how much worse it becomes for the child with Asperger’s during such a festive period?

I say I’ve learnt my lesson every year, have I really? No of course not, I still return to the supermarket the next year, kids in tow, battling the crowds as I try to do my Christmas food shop and it’s always the same… the end result is… Cans of baked beans rolling down aisle 10 and Little man shouting some pretty offensive language (at me of course) while kicking anything or worse, anyone in his reach! Not a pretty thought is it!

If you’re in a position to leave that little darling at home, I’d say… GO FOR IT! If you’re not then if you can, then do it as early as possible to get it out the way!

There is always the option of paying for your Christmas at the beginning of the year, and this isn’t just for the reason of spreading the cost but also avoiding the big Christmas rush and therefore huge Christmas meltdown.

Still, I don’t know why I’m telling you this? Do I take my own advice?

Never… though I really should! Still like many, I always find that Christmas is the last thing I want to be thinking about come January and then before I know it we’re in November and this mum is panicking BIG STYLE!

Maybe next year I’ll order myself a big fat hamper filled to the rim with Christmas goodies! Who knows, I can only but hope I hear myself saying that in January!

I hold my hands up, I do still have stuff to buy and I do see one or two meltdowns on the horizon.

Here’s a couple of things I will be doing to help avoid a blow up or a least a monster scale meltdown!

The biggest advice I can give myself or anyone else who are yet to shop, would be not to get too stressed! (Easier said than done, I know). However, when I’m stressed Little man easily picks up on my mood and therefore becomes more stressed himself! This is an important lesson I’ve learnt to date, regardless of the time of year or situation.

Another example why stressing is a super bad idea is the fact that it causes me to parent poorly, I can’t do the job that I’m meant to do, I become a wreck and becoming a wreck results in a worse meltdown from Little man. It’s all about remaining calm, dealing with the children best I can and getting the hell out off there!

Another piece of advice of valuable advice I can offer, is… Ignore the judgemental finger pointers, the glaring eyes of your fellow shoppers, who gives a rats arse what they think? Seriously it’s so not worth it!

Yes, I’ve stood in the supermarket trying to educate my fellow shoppers on autism, aspergers or sensory processing and at any other time I’d say, ‘Yay… go for it’ but at this busy & already stressful time of year, my advice is worry about no one but you and the children, get your shopping and get on out of there.

You could always do what I’m planing and wear a t-shirt with the words,

“Merry Christmas my child has Aspergers”

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How to approach 5 of the most common difficulties that occur for children on the autism spectrum

How to approach 5 of the most common difficulties that may occur for children on the autism spectrum.

(1) Sleepless nights: Who ever said it was babies that caused you sleepless nights? Whoever you were you lied. Its well documented that children on the autism spectrum have difficulty establishing a bedtime routine, getting to sleep or waking during the small hours.

Now, I don’t have all the answers here, how could I possibly when my child is still awake now at 2.43am! However I have tried things that have had an effect but sadly not for long. Don’t panic every child is different and not every child on the spectrum will have difficulty sleeping. Here’s some tips that have worked for us short term but for others they never stop working.

For those that have difficulty establishing a bedtime routine, consider making a schedule. These can be brought but tend to be costly and can be easy made with some paper, a laminator, some Velcro, brightly coloured pens and some stickers for decorating (I will upload an additional how to post to demonstrate how to do this in the near feature)

The schedule will contain a set of personalised images, e.g… a bed, toothbrush, story book etc… Keep all images in a little pockets attached to the schedule and the child can stick each image on the schedule (with the help of the Velcro) as and when each action is carried out. Many children with autism adapt and even enjoy this independence they just find it hard to do things in sequence without visual prompts. Rember schedules are great for all children with or without autism.

For the Child that can’t settle try story tapes the tone and gentleness of the story teller could well send them off to the land of dreams.

Sensory reasons may restrict your child’s sleep. Weighted blankets, sensory lighting, sleeping away from a window all may help.

Reduce the amount of food and drink your child has one hour or more before bed. Make sure they use the toilet as this combined may avoid your child waking in the night.

(2) Meltdowns: No, these are not the same as tantrums and yes there is normally a reason behind them whether its anxiety, sensory processing difficulties, an inability to express oneself or a lack of understanding.

Those children on the autism spectrum that have meltdowns will often feel completely out of control and are very hard to comfort.

There are times they seem to come from nowhere, yet most of the time a parent will be able to sense one coming (Especially after so many)

There are triggers everywhere and of course these can’t always be avoided, however here’s some tips for certain situations you may find yourself in as a parent to a child on the spectrum.

(a) If your child has sensory sensitivities then be aware of the environment a child is in! You may notice that supermarkets are a prime meltdown hotspot for the sensitive child.

(b) Prepare a weekly schedule, e.g… times, place, events displayed on a visual timetable or planner. Depending on a child’s age you could use pictures or words. This allows the child to know what it is that’s coming next. For a child who is very dominated by a routine, consider making a handheld travel schedule and for those who can afford one, get one on your ipad.

(c) If your child is becoming very confrontational with you, don’t react by arguing back with the child, it will only make the situation worse and will likely carry on much longer.

(d) Be consistent and don’t give in. A child on the autism spectrum can still work out what gets them what they want, which will therefore encourage the behaviour. (I really need to take my own advice here as I’m still having problems with this one).

(e) If safe let your child get it out their system & avoid becoming overpowering.

(3) Anxiety: My own child knows all about anxiety, he drives himself nuts worrying about things that no child should worry about.

Be careful what your child sees on TV. Little man can become very upset, frightened and distressed when hearing something on the news.

Give your child lots of reassurance if they are becoming distressed.

Be careful what types of conversation are taking place in the child presence.

Use social stories as a way to offer the child reassure. When they are fully informed in what will happen, when for example visiting a dentist etc, the anxiety will be reduced.

Speak to your child in a non-ambiguous way, avoiding misconceptions and upset.

(4) Lack of support from external services: You may feel that your child on the autism spectrum is not having their educational or social needs meet. However it is likely that the local authority (LA) will disagree.

Note: In the UK you don’t have to wait for a senior teaching member/SENCO to apply to the local education authority (LEA) for a statutory assessment of your child’s special educational needs as you the parent also have the right to make such a request! However this does depend on whether the child has been assessed in the past and how long ago this was.

If the LEA refuse your request you can make an application to the SEN tribunal.

You should keep letters and documents filed and in-order as you may require these as evidence in the event you need to appeal.

You are your child’s best advocate, if you feel something isn’t right don’t give up on it in-till action is taken.

If able, take video evidence of your child’s behaviour or meltdowns, this can be used when trying to obtain respite, a statement of sen, or even a diagnosis.

When dealing with the LA/LEA or school do so via email aswell as written letter! This will create proof of contact and what was said.

If you believe your child needs more help than they are currently getting then you’re properly right. Trust your instincts.

You have the right to request copies of your child’s educational and medical records. Educational records can contain evidence for a statutory assessment or a statement of special educational needs (SEN). This can be done by using the Freedom of information & Data protection act. School’s will be given 15 days to comply.

(5) Sensory Processing: Children on the autism spectrum are likely to have difficulty with their senses whether the child is over or under sensitive both can create a host of problems.

Here is a few common issues that some children may experience, though it is important to remember that all children are different regardless of their condition. Your child may face all of the examples below where another may face only a few if not any at all.

Tactile defensive: A child who is said to be tactile defensive will have difficulty with the senses relating to touch. This child may not be able to tolerate certain materials (Little man hates raincoats). A child with autism may feel physical pain from wearing certain garments and this may trigger challenging behaviour. If your child refuses to wear certain items of clothing then note down the fibre that is used and avoid these when out clothes shopping.

If your child is expected to wear a school uniform and is sensitive to the texture of the fabrics it is made from, talk to the school to see if there is a way to compromise and maybe find something that is very similar as to avoid your child standing out from his/her peers.

Wear new uniform in just like you would new shoes. Do this for around five or ten minutes per day increasing the time along the way. This can be done during the school holidays

Some children are sensitive to loud noises, others are even sensitive to certain tones and pitches a noise can create, including the way a person sounds when they speak. Be sure to keep your child’s school fully informed of such difficulties so they are aware of triggers, e.g fire alarms, break-time bell , etc.

Try your child with ear defenders and if successful request that your child wears these while in school.

Sensory seekers: Those children who sensory seek may flap, fidget and swing back in their chair at school. This means the child is lacking sensory stimulation, fidget and sensory toys can help.

Make the child’s environment inviting, bedrooms could host a different range of sensory items as well as bold and fun colours being used on textiles and interiors. There are lots of ways to create this type of environment on a budget and I will try to write a post on how to do this sometime in the near feature.

 

Just a little girl (part 2)

Just a little girl (part 2)

This is a follow on from the post, ‘Just a little girl (part one)’

OCD was now a big part of my life. I can only describe it as a nomality.

As a ten year old child I found it far to powerful to battle. In many ways it made me who I was a paranoid little girl.

Though the fear of fire still gripped me, I now had a far greater fear, “Death” No one told me that the cancer within my little sisters body had the power to take her life! I just kind of knew! This petrified me and practically sent my OCD into overkill!

I never took chances, I couldn’t afford to miss a nightly prayer! I forced myself to continue with the rituals, over and over again.

Looking back, I can see why my, “Odd” behaviour wasn’t picked up by my family. Life was manic which in many ways made the OCD easier for me to hide! Yes, though OCD was a big part of my life, I still knew, deep within, that my behaviour wasn’t the, “Norm”! OCD may well have been a nomality to me, but it wasn’t for everyone else, it was, “strange, weird, odd, carzy and a little bit loopy” Did I see myself as a crazy child? Yes, I guess I did!

This was nineteen years ago, I didn’t have google to turn to. As far as I was concerned, their were no others like me. This fact a lone made it far harder to even comprehend telling anyone, so at this point nobody knew, (and if they did, they never said so)!

There was no discerment, I didn’t know why I made myself carry out what I knew deep down to be pointless actions. Yet, the OCD just obscured any practical thinking this ten year old had, leaving me relentless to it’s powers.

Despite my OCD and my sisters illeness, my childhood was a happy one. I loved that I lived with both my mother and grandmother. I remain close to my father despite him not living at home with us.

The years that my sister was seriously I’ll must have been the hardest and most tiresome in my mothers life. My mother had always worked & continues to this very day. Rachel was so sick my mother was forced to take leave. She was now frightened to leave her daughters bedside. Rachel’s care was now shared between three different hospitals, ‘Lewisham’ (our local hospital) ‘Great Ormond St’ (the London based hospital for very sick children) & ‘Barts’ (another London based hospital with a specialised Cancer unit). My mother didn’t know if she was coming or going.

Only now as a mother do I fully appreciate just how difficult a time this must have been for her.

I remember all to well the effects, ‘Leukemia’ had on my sister, who was nothing but a toddler when it struck. I was visiting her at, ‘Great Ormond St’ once, when she throw up all over me, resulting in me needing to go home wearing an operating gown, (which clearly displayed my underwear at the back)! Lucky for me, we wasn’t using public transport, (as we usually would)! My uncle was with us, meaning we would be going home in the car.

Another strong memory I have is my sisters, “sudden” hair loss. I remember this baby with beautiful, thick, floppy, White blonde hair. What seemed like over night, it was all gone leaving her with nothing but a completely bald head.

Children at school would say the most nasty things, like, “Hows your little brother?” I would often fall for it, replying, “His fine, thank you” only to be laughed at and told, “Not that brother, your little bald one”

I look back now and see that, “yes, they were just silly little kids who didn’t understand, but at the time, I just wanted to hit out at each and everyone of them!”

I do remember one particular occassion, my sister was allowed home for a few days (very rare) I danced with her in my mothers rooms. She was dressed in nothing but a nappy. It was a very warm summers day and I could her the children playing outside. I had no desire to join them, I just wanted to be with my sister. As we danced I told her I loved her, in my head I was praying for her not to die! That’s one of my strongest childhood memories.

As if our family hadn’t had enough bad news, things were about to get worse. Not long after my sisters diagnosis, my first cousin on my fathers side of the family, was hit with the very same cancer! I can’t remember how old she was, older than Rachel, just a few years younger than myself I think! This means she was 7 or 8 years old at the time. Can you begin to imagine, both my father and his sister were parents of two very sick little girls, battling leukemia. I will never forget my mother shouting at my father, “But they told us it didn’t run in families!” You have to agree, this seems like more than a coincidence, it was almost as if God had it in for us.

Well, I’m pleased to report that both my sister and cousin are now healthy young women, both each with a beautiful daughter of their own. Both fought the scary C word we all fear, both came out the otherside.

By the age of 12 and fast approaching a, “Teen” things started to go a little bonkers for me. I started secondary school, took up smoking and was fast becoming a rebel. The nights remained as bad as ever, so during the day I just wanted to enjoy myself, have some fun. For the first time in my life I noticed makeup and boys. I watched when the, “popular girls” applied their makeup, tied their ties shorter, while rolling up their skirts. This was what I was becoming! The toilets become my regular hangout, where I would smoke my way through lessons.

It was during this time, that I started to pay attention to what I ate. So much talk amongst the girls involved the topic of, “Diets”

Looking back now, this scares the hell out of me. Yes, I don’t want my own daughter who is eight to worry about her weight at this crazy age. As 12 year olds, we were far to young to take on such issues! Yet here we are in a day and age where girls as young as 7 (maybe younger) have been known to have body hang ups. This is something that causes me great sadness!

Me, I was a stick, (so to speak). I was a healthy child, a girl who could eat what she wanted yet remained naturally silm. Some of the girls, who I wanted to mix with, the ones I were convinced were the, “In crowd” openly discussed how they made themsleves throw up after dinner, how it was a win, win situation, you could eat what you wanted and remain silm… For fuck sakes, we were just 12 years old! By the time I was almost 13 I was doing this regularly. This was despite the fact I knew I was thin, I didn’t even think I was fat! Yet, it was now more then a habbit, almost an addition. Worse, Bulimia now mixed in with the OCD resulted in an explosive combination. Combined, the OCD now controlled the Bulimia. Life was about to hit an all time low.

The last part of my story will follow soon. Just a little girl (part three) will be the final post which concludes my story. Please return to find out the ending.

Note the story has been written to raise awareness of some of these issues, why highlight why I have an understanding of some of Little mans difficulties. Although I don’t have Aspergers, I do relate to his OCD behaviours and is over anxiety.