Tag Archives: respite

I don’t feel like me anymore

21 May

Lately I’ve not been feeling like me, my head feels as if it’s in a different zone from my body, I’m here but not fully.

I really can’t explain what it is I’m feeling, not even to that of myself. Why? Because I just don’t know!

Nothing huge has taken place, no drama out the ordinary. I’ve had just as little sleep as always… So no, I’m no more tired than usual (not physically anyway)!

Yet everything that I do I’m only half focused… I feel as though I’m running yet getting nowhere! The littlest of things are grating and grinding me down, the house is a tip and my motivations a miss!

I don’t want to drag my sorry arse down to my GP, leave with prescription for Prozac in hand. I don’t want to be an emotionless pill popping trance walking zombie again, because I’ve been one before and I don’t want to go there again.

But the signs are all there, not answering the telephone when it rings, lying on the floor when the door bell rings, crying over jeremy kyle when I’m normally peeing my pants laughing at that show.

I ask myself the same question over and over again… “am I going crazy”

My children are driving me loopy and although this is no more than usual, I’m finding myself snapping more quickly.

Take today for example, Little man comes home from school with yet another letter highlighting his challenging behaviour, I’m sat on the phone where I’m placed on hold for what seems like forever. Now I don’t even want to be making this call, yet it’s unavoidable, it’s one of those really important calls. 40 minutes later, having sat frustratingly on hold somebody finally comes to my assistance.

The Little man is fully aware of my stress, he even suggests at one point that I just hang up and give up, so when he starts blowing on on those football supporters horns (you know the really loud ones that almost deafen you) as soon as I’m connected, I’m simply not impressed. Fully aware I’m now in a position to talk to someone and having continuously requested he stops, he continues with his annoying horn blowing antics. The guy on the other end of the line, suggests I call back at a more “convenient” time, I feel like screaming “there is no F#*%#*% convenient time” instead I request he waits one minute (given I’ve waited 40 or more) so I can sort out my child’s menace like behaviour, only the cheeky so and so (yes, I can think of more fitting names) puts down the receiver and hangs up on me!

I look at the Little man his laughing by now. Placing my hand over my mouth as to muffle the scream, I jump up and leave the room. Retreating to my bedroom I let out a giant sob, Yes, I feel sorry for myself… Very much so!

It’s not long before little sister is home and she’s injuring her finger while forcefully trying to remove her bike from the back gate, the toddlers screaming his hungry and the little man is again blowing that bloody horn. A moments madness I take the horn and in a fit of anger I break it! It was either the horn or my head against the newest brick wall. With a margarine slowly approaching I feel to drag my sorry backside to bed but have dinners to cook and after school activities to sort!

I’m hoping to have a night away in Brighton next week. I’ll stay at the hotel du vin, relax in a roll top bath, eat chocolate till I’m sick and watch soppy movies in a large king size bed!

The next day I’ll get some retail therapy shopping in the lanes and chill-lax with fish and chips on the beach, before skipping home refreshed! Well… That’s the plan at least.

I just want some “Me time” is that so bad?

#HAWMC DAY 14 – A Little piece of paradise

16 Apr

The morning air is warm, the ocean breeze causes me to catch my breath…

The clear white sand glistens like millions of tiny crystals as its hit by the suns bright glare.

 I close my eyes only and listen to the light sweeping motion of the calm ocean waves that lay before me. It’s still early and the sound of a dolphins echo is the only voice to greet me.

 I drown myself in this moment, capturing my surroundings, storing the memory like a postcard.

 I spent the day as if I’m floating in nothingness, drifting in and out of a peaceful sleep I wake to drink freshly squeezed lemonade, so cold it cause my brain to freeze.

 A million miles away from my home, I desperately miss the presence of my children but I’ll return a new women, recharged and ready for anything the world has to throw at me. 

 I’m not selfish, I’m human! We all require a break from time to time, some space to declutter a frazzled mind, recharge one’s batteries. This I’m sure will make me a better mother.

 Yes, I could choose to spend an hour sat reading in Greenwich park, though given the choice, I’d much rather opt to chill out in the Maldives!

 Hay… A girls entitled to dream right?

image via google images 

Post 14/30 of the Health Activist Writing Month Challenge (#HAWMC) set by Wego Health.

Failing to regulate one’s own emotions

14 Feb

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?

Children In Need brings about some autism awareness

21 Nov
Pudsey on Broadcasting House

Image by Rupert Brun via Flickr

Goodness me… what a week it’s been, Friday I spent the night crying over Children In Need, Saturday I helped pick the two new faces of the new Argos kidswear range (I will share my experience a tad later in another post) Sunday I spent alday throwing up! Yep, you heard right, I was unfortunately the sufferer of some nasty tummy bug that has actually resulted in me receiving little sleep and explains why I’m blogging at the ghastly hour of 4.16 am in the early hours!

Sunday was actually set to be a great end to an awesome weekend! I was sent tickets to the multimedia screening of Happy Feet 2 in 3D at the empire Leicester Square and was dead disappointed not to be able to go.
I expect that I missed out on an awesome film, and can’t wait till it officially hits the big screen now so I can make it up to the kids, especially Little man who despite his sensory related problems was still prepared to give it a go! He had become taken in by the whole 3d aspect of the film meaning he didn’t want to miss it 😦 Mummy is truly sorry kids!

One thing I didn’t miss was Children In Need which was screened on BBC1 on the night of Friday 18th November. I made myself a warm drink, naughtily sneaked some chocolate from the fridge and jumped in my cosy bed at an early 7.30 pm to settle down and watch the yearly show. Children in need has always had the ability to make me cry, I just become a sobbing mess, with streaming makeup leaving me resembling something other than human. I really didn’t fancy getting emotional in front of my kids hence the reason why I had retreated to my bedroom, only their kids and kids always follow and that’s exactly what happened! My big cosy bed became an overheated space containing one big and three little people who continuously asked “Mum are you crying?”

One thing I was really pleased to see, was that Children in need had not only featured a clip highlighting autism, but also one raising awareness for Aspergers Syndrome. Yes, the world still has a long way to come, but doesn’t this show that we are already much further now than ever before?

The Clip highlighted the daily struggles of a young man with aspergers who needed support to be able to travel independently both two and from college. Children in need highlighted that it cost £55 per day for a child with Aspergers to receive such support through the travel training programme.

I think people often forget that when our children come to that school-leaving age everything begins to change. You see many off you will relate when I say we spend most of the primary years and at times, secondary years of our children’s education, fighting for a statement, school and of course a means to get to that chosen school and back home again.

Those lucky enough to eventually receive all of the above, will likely not have even began to think about the next step, the transition from the secondary years to the education their child will receive once they are 16 plus. Unless your child is staying on at school, where they have been appointed a place in the sixth form it’s likely that your child’s transport arrangement will be no more.

Once your child steps foot in that college it would seem that any legal duty the LEA once had is fast becoming non-existent. Did you know that due to the withdrawal of transport, many children on the autism spectrum and those with additional needs, never go to college, not because they don’t want too, simply because they can’t.

Travel training schemes differ in each area and are often offered by schools and LEAs to children still in school in-order to cut the cost of door to door pick ups and drop offs funded by the LEA. It is normally left to voluntary and charitably organisations to deliver travel schemes to the older child, and even adult. The scheme itself will also differ in what it offers depending on who’s providing it! The aim is to get the child using public transport services, therefore cutting the cost to both LEAs and social services. Of course many will state it has been enforced purely for the benefit to the child that independent travel brings, Yes, though this may be beneficial to many, I can’t help but think it’s mainly the money-saving aspect of things that holds the greatest benefit of all!

It’s great to know that funds raised through such huge campaigns such as Children in need intend on distributing some of its raised funds to help the Independent travel schemes as this enables young people like the young man they featured in the campaign video, to carry on in education, because education is our child’s basic right. Many voluntary organisation use the funds to provide training on an individualised  level as well as providing “buddies” who accompany a young person on their journey allowing them independence to do what it is they want to be doing, whether that’s carrying on in further education or even going to work.

I think the clip really hit the nail on the head, and did well to highlight many of the difficulties our children have with everyday interaction and anxiety this may bring! It even touched on the subject of isolation, bullying and self harm, areas that are all to commonly associated with children who have a diagnosis of Aspergers Syndrome.

Children in Need also featured a clip of a young 12-year-old girl who has a diagnosis of autism spectrum disorder and a learning disability. She had become extremely isolated due to the fact the friends she once had as a younger child had now outgrown her, despite her being the same age. The clip highlighted one really important feature, which was, quite often the child is aware of their isolated ways and actually wants to be within a social circle that allows them to interact with others. The thing is, autism often makes this extremely difficulty. Once the young girl had started to attend a special centre for children with a range of additional needs, life has become so much more fulfilling for her, she is no longer lonely or isolated which was not only beneficial for her but her whole family, which could be clearly seen from the interview with her mother.

The fact that their just isn’t the funds to supply more staff as to allow more spaces for children who really need them is heartbreaking, and let’s be honest, it just goes to show the devastating impact the Government cuts have had on our children’s lives and continues too. I for one have a great deal of respect for any charitable organisation who set out to provide respite for children with additional needs, these social clubs and groups provide the children and young people with a degree of independence and the opportunity to make friends they may have never had the chance to make, while parents and carers get that little bit of “Me” time enabling them to be right on form once their child has arrived home.

These are just two examples of how important Children in need is and how it really can change lives. Their was many other clips that touched my heart especially that of Little Elliot who sadly passed away due to Cancer at just 9 years old (the very same cancer my sister had aged 2) Elliot spent his last days in the hospice “Claire House” a wonderful place that sadly may one day vanish due to the lack of money it has coming in to keep it going.

Claire House Children's Hospice

Image via Wikipedia

As a mother to a child of Aspergers I can directly relate to some of the issues highlighted within the Children in Need programme, I donated, because I, like many others want the best for my children and every other child like them. Maybe you didn’t watch the programme or haven’t made a donation, maybe after reading this you will? Every single penny helps to deliver services like those described above, seriously it’s only us as a nation who can really make a difference!

The children in need show which was broadcasted on Friday 18th November 2011 made a record-breaking whooping 26 million, how bloody awesome is that!

It’s not to late to donate, just click HERE

If you missed it, Check out Children in Need on iplayer 

To see some of the places that benefit from Children In Need in your area, Click HERE

Want to learn more about the fantastic work that Claire House Children Hospice do, Click HERE

If like me, you saw the incredible work that Claire House provides to terminally ill children and their families and you want to do more, why not make a donation right now by sending a simple Text to CHG010 £1 to 70070 You can donate £1, £2, £3, £5 or £10 via this method.

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