Tag Archives: depression

The Kleenex man

10 Jun

I sit staring at the large white clock to the point some may think I’m fixated. It reminds me of the type of clock I used to have at school. I would stare at that clock for hours longing for time to lapse around me.

“Miss Parkinson… Miss Parkinson, can you hear me”

Shut up I thought, of course I can hear you, it doesn’t mean I want to!

But it was I who had came here, no one had asked me to, I wasn’t forced, dragged kicking and screaming.

It was I who had picked up the phone, dialled the number, made an appointment.

Now I didn’t know what to say…I didn’t… well no, I did know why I had come. But now I was confused so fucking confused.

“Miss Parkinson, have you got to be somewhere”

Bloody hell, now I felt as if I was in school! Seriously is he joking?

Sarcasm within therapy whatever next!

“No” I said

“Ok let’s get started, but at your own pace…OK?”

I nodded, I wanted to speak, really I did. I had a lot to say but now I was here my head it was all muddled like a jigsaw with pieces missing.

I had been here before, I trusted him, the man who wore the nonjudgemental face, the man who always had a box of Kleenex at the ready.

That’s why I chose here you see, I needed to see the Kleenex man!

I’m still staring at the clock, its tick and its tock can be heard through the bitter silence.

He coughs…. I look round

He smiles as he passes me those tissues.

Taking one I hold it tightly in the palm of my hand, if I don’t I know I’ll fiddle with it… likely pick it to tiny little pieces.

I take a deep breath in closing my eyes I excel opening them once more.

“Nobody believes me” I said.

I can feel it, the warm water leaving the corner of my eye. Please don’t ask me, I think. But then he speaks

“Who… Who doesn’t believe you, and what is he they don’t believe” he asks inquisitively.

Once more the room is filled with silence and I can hear the ticking and the tocking of the clock. I look down and there scattered around my feet are tiny pieces of tissue.

“Who…?” he asks once more.

As I go to open my mouth I taste the salt form my tears, like a child I catch my breath…

“The school… The school” I whimper.

Silence once more… Tick… Tock… Tick… Tock…

Then before he can ask…

“My son’s school, they don’t believe what is happening, they think it’s me… They think it’s all my fault!”

“They won’t help me… No one will, why, why won’t they help” I plead.

You see, I was close to the edge of crazy, so fucking close. The situation was costing me my health, what kind of mother would that make me? On That very day and at that very time I wasn’t aware of what I’m aware of now! The very beginning of a Journey one I never planned on taking, I don’t have a choice, no one asked me if it was okay, god didn’t ask me. I hate it when people say that god does everything for a reason, he chose me because I’m strong. Sat here writing this I remember that day with my therapist so clearly, and on that particular day I felt anything but strong! I felt desperate, I felt as if I was standing on a mountain screaming and nobody looked up… Nobody! Your little boy is hitting you, his so angry and he charges at you like some crazed bull, but his not a bull his a 6 year old child who tells you “mummy I hate you” as he rages with sheer frustration! But why is he frustrated? It’s just that, my lack of knowing… He wants me to, he needs my to understand what his feeling! I miss the trigger I then spend a lifetime discovering it. No one can teach me, I need to learn myself! But this doesn’t mean we don’t need answers… Everybody needs answers!

Ashamed I said nothing, for a while anyway. But i’m no super mum and soon I broke… Started crumbling into a heap of madness, but when I reached out, there was no one there to catch me. I didn’t say I needed parenting tips, I didn’t need some false caring stranger visiting my home and judging my parenting… Especially when I had asked my sons school for help. I felt judged, bullied… I felt disregarded! They failed to notice the bigger picture, they almost cost my child his diagnosis of Aspergers syndrome, they almost cost me my sanity!

20120610-052412.jpg google images

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 5 – Drifting in dangerous waters

5 Apr

I’m drifting, detached from existence, alone but so peaceful. The only voice I hear is that of my own, the messages it gives not always welcome! No one drifts by, I see them in the distance though I struggle to reach them, suddenly feeling weak I begin to cry!

I’m lost, afraid, so many questions left unanswered, no one to comfort me nor direct me, no one but my own reflection.

I see her, the young woman stood before me and though I recognise her, her face seems somewhat different, her eyes intensely tired & without sparkle, an expression of worry spread across her face, one I have not seen before.

Her mind has been taken and no longer does she own, a woman consumed with guilt and blame she has no escape, no way to explain to return to the place she once knew.

Trapped in mind and body, screaming from the inside out, no longer able to look at her dispirited self, beyond disrepair she dissolves into the waters that surround her, those that once held her now invade her she screams loudly yet no one looks up.

Detached from reflection and without direction, distorted in her thinking and over taken by nothingness she analysis the situation only to realise shes alone because it’s safer this way, she pushed them all away and retreated to craziness…

Alone at Dawn Photo Credit: Title Alone at Dawn, Flickr, HelenJr

Post is written as a reflection of my past mental health difficulties and has been posted as part of the Wego Health’s #HAWMC (Health Activist Writers Month Challenge) 30 days, 30 prompts, 30 post. This is post 5/30 prompt: Find inspiration within a random Flicker image.

Ruby Wax – Depression isn’t having a bad hair day!

10 Mar

Have you ever had one of those moments, when what you’re seeing is so… hilariously funny, yet, somehow powerful enough to move you to tears? Something so thought provoking it leaves you with a strong desire to talk about it? 

I have!

I was greeted by a delightful tweet earlier in the week by the fabulous Britmums! A tweet informing me that I had won their competition, bagging myself a pair of tickets to this weeks WOW (Women of the world) Festival, located at London’s Southbank. What’s more this included tickets to see the play “Losing it” and a chance to meet the star “The Lovely Ruby Wax” following the performance.

I’d previously heard about the show, which also stars the very talented  signer-songwriter “Judith Owen” so had some knowledge of the plot. What excited me most, was the fact this wasn’t set to be your average play, Ruby Wax was actually on a mission to break the stigma associated with mental illness, this would be her being open and honest about her own mental health while somehow keeping it comical! 

I’d never seen it done, the only time id ever seen a comedian raising such a subject was by cracking non tasteful jokes, laughing at those with the condition, as opposed to laughing with them! I was intrigued to discover if and how Ruby would achieve it!

Well, yesterday morning I found out….

“Losing It” is the complete opposite to the above, its made up of an extremely funny, yet thought-provoking script that really is capable of causing you to fall of your chair as you pee your pants laughing or draw a tear as its strong message buries itself deep within you. Judith Owens amazing voice with powerful lyrics combined with the hilarious yet informative words of Ruby Wax, together create something amazingly powerful, something that grabs a hold of you, leaving you replaying it in your mind once its over, therefore proving it to be the powerful awareness tool it set out to be!

Here’s what they say about “Losing It” over on the official website

Ruby Wax had it all – career, dream house, husband, kids, so when was the moment she realised she was the 1 in 4…

Somewhere between painting her kitchen beige (again), realising she didn’t own a life manual or comprehend the contents of a children’s party bag?

Ruby’s acerbic, honest humour and Judith Owen’s touching songs are both poignant and laugh-out-loud funny. This show gives you the chance to explore the ups and downs of mental illness, its stigmas and the freedom you discover when you share the darkest moments of your life.

I may not have had the same life as the lovely Ruby Wax! I didn’t attend drama school and bag myself a carer as an actress or comedian, but I did create my own wonderful family consisting of three beautiful children. However, like Ruby, this didn’t stop the hand of depression, it didn’t cure me of the ongoing anxiety attacks, severe OCD and the up and down eating disorder, all being an active part of my existence since childhood. 

My head nodded furiously as Ruby touched on the feelings of shame one feels because this is an illness located in the brain rather than another organ in the human body! Ruby is right, Mental illness doesn’t care who you are, celebrity, doctor, mother….  If your one of the 1 in 4 that mental illness has chosen to capture, than status holds no ground, we’re all human after all. 

Ruby becomes an open book, she tells her story by doing what she does best, creating laughter! I don’t know anybody who has managed to talk about depression for an hour or more without causing its audience to leave with their heads hung low.  

Oh, and it seems that Mental illness isn’t all Ruby’s clued up on… Oh no! She seems to have the whole relationship and marriage thing sussed out pretty well too! Now, I really don’t want to ruin it for those who are yet to see the play, lets just say, I almost choked on my own tongue laughing… Ruby at her best!

Both ladies make this sensational entertainment, the sheer fact that together they have created something so funny from such a serious issue, without damaging it, is fabulous, and reminded me how talented a comedian Ruby really is. This show left me wanting to go home and help break the stigma, while allowing myself to let go of any shame I may still hold regarding my own demons. As a woman who has been to crazy town and back again, as well as a parent to a child with Asperger’s who suffers greatly with anxiety and depressive moods, I’m with these ladies! It’s about time our society realised that depression isn’t having a bad hair day or feeling sad! Stop offering us tea and telling us to perk up… tea and ignorance cure nothing, just piss us off that bit more!

I’d recommend everyone checkout “Losing It”, if this doesn’t change ones perception of mental illness, then quite honestly nothing will! Having already performed for all branches of the priory and a large number of mental health wards up and down the country, “Losing it” brought the play to the public by going on tour  last year! Both the public and media seem to love what these ladies do, with a large number of glowing reviews and feedback from your national news papers, your average tom, to celebrities such as Annie Lennox. 

I was lucky to have a quick chat and grab a picture with the lovely lady herself see belowOn the whole, a great way to spend my Friday! A large dose of appreciation is on its way to Britmums for the tickets and a double dose making its way to Judith Owen and Ruby Wax for their truly inspirational play and attitude to metal illness… your all great! 

Check Out the official site for show dates (currently offering special price of £25 for their planed shows in London’s West end in August) click HERE for details

Please check out the Black Dog Tribe a social network/forum and informative website where members can share advice, connect with one another, get all the latest news and updates on mental health and current campaigns and developments! Both Ruby and Judith are a big part of the network and encouragement you all to go and say hello, speak out, gain comfort and break down the stigma  

Here’s a taster I uncovered for you on youtube 

Lastly those attending Britmums Live, don’t forget Ruby wax is a listed speaker, so if you haven’t got your ticket by now I’d suggest you wiggle on before its listed as a sell out.

 

7×7 My Favourite blog post’s

25 Feb

I was recently tagged by the lovely Jennifer, an awesome talented blogger, who blogs over at Jbmumofone to give you my 7×7 low down.

First I must share the seven top blog posts, I’ve read over the last week (please bear in mind this has sat unpublished a good week, due to careers brain)!

Next, I’m to share 7 things about me that you don’t know already (if that’s actually possible)!

Lastly, I’m to share the meme love and tag another blogger, who hopefully isn’t already tagged (if I’m lucky)!

Ok… here it goes… the seven blog post I’ve enjoyed this week!

1) Kate Vyktorian wrote about her amazing experience as an attendee at the Elle Style Awards 2012, over on her blog Snugglebubbly. Yes, this jammy blogger bagged herself a ticket to this celeb fest as a result of her recreation of a red carpet look, with the use of items from the Next directory… Lucky girl!

2) Lexy from Mammywoo in her emotional, yet inspiring post, ‘Forgiveness with extra cheese

3) Angela, a talented new mummy blogger wrote a beautiful post of love, dedicated to her 9-year-old son, in the post, ‘A letter to my loved one’s – Part one

4) Autism Mums & Dads is a brand new blog displaying some talented, inspiring words. I read the post, “Everything but the kitchen sink” and had to share!

5) From Fun to Mum, the funniest post I’ve read all yet, let alone week. If you haven’t read, “The Day That Shit Happened” I’d run off and read it now!

6) Bluecrisps, a fellow parent to a child with autism wrote the post, “Does this buggy cause offence” when speaking how our societies ignorance get going when she takes here daughter out and about in her special needs buggy. It’s a strong message from an empowering parent of a child with a hidden disability.

and finally…

7) “Missing my Grandad” a beautiful post written by “a mummy too” as her weekly gallery post. Filled with emotion and love, it’s a really lovely piece.

Next: Seven things you may not already know about me!

  1. I hate eggs, any type but the chocolate type
  2. As well as my love for writing, I spend time drawing and painting too.
  3. I own so many shoes, that they need their own wardrobe
  4. I did plastering and brick-laying at college and passed my first and only exams on the two subjects (no bloke tells me it’s a man’s job)!
  5. I laugh when Nervous
  6. I’m rubbish at icing fairy cakes
  7. I’ve been in a relationship for 15 years and I’m only 29 years old… Goodness me!
  8. Lastly, I tag

The lovely Kylie Hodges over at “Not even a bag of sugar” to list her 7×7

Guest Post: Children with autism have significantly different gut bacteria

24 Jan

Today, I’m passing my blogging pass over to the lovely ‘Soraya Janmohamed’ from OptiBac Probiotics (my sponsor for last years Mad blog awards)

 A study published earlier this month has found that autistic children have significantly different gut bacteria to children without autism.

A novel method of analysis called ‘PCR’ (Polymerase chain reaction – a technique where scientists copy and examine DNA) allowed researchers to detect high levels of members of the bacteria ‘Sutterrella’in many of the children with autism, and in none

of the children without. Sutterrella was found in 12 of 23 of the autistic children but in none of the 9 participants without autism who took part in the study as a control.

This is not the first study to demonstrate a link between autism and gut bacteria (or microbiota) and children with autism are often thought to anecdotally suffer with gastrointestinal problems such as food intolerances, diarrhoea or constipation.  The fact that this study shows a little-recognised bacterium to be present in more than half  the autism children with autism is a significant finding, and calls for further research in the area to be done.

For an in-depth look at previous findings in gut bacteria, autism, and the potential of probiotics (good bacteria), take a look at this article on probiotics and autism.
Isolated bacteria - Micrococcus luteus

Interestingly, a large survey released in the last few days has found autism to often go

hand in hand with other mental & behavioural conditions in children, such as anxiety, attention deficit disorder, or learning disabilities.  Anxiety and similar conditions were more common in the slightly older children with autism. 92, 000 parents of children under 17 years old with autism took part in the phone survey in the USA.  This could again be of significance, partly as  anxiety has been linked to gut bacteria in the past.

Reference:

http://mbio.asm.org/content/3/1/e00261-11

OptiBac Probiotic Facebook page: http://www.facebook.com/optibacprobiotics

Melatonin for the child with autism

8 Nov
A bottle of melatonin tablets

Image via Wikipedia

 I may have recently mentioned that Little man has had a change of medication. He is still taking Melatonin, however now his on a different brand, ‘Circadin’ which is a prolonged- release tablet.

  Melatonin isn’t a medication given to Little man as a way to control his Aspergers syndrome, it’s actually given to help him to sleep at night and remain that way in-till a suitable hour. Many children on the autism spectrum have difficulties with settling to sleep and little man is definitely one-off them. 

 Melatonin, actually belongs to a natural group of hormones and it’s something everyone’s body naturally produces. It’s the Melatonin we produce that helps us to become tired and relaxes our mind enough for us to sleep. Its thought that those on the autism spectrum do not produce enough of this hormone hence the reason why so many are unable to sleep or sleep for long periods of time. 

 Little man has had this problem since he was baby and in all honesty it’s grown much worse with age. I wrote an article for SEN magazine back in August which describes the time I woke in the night to find my 4-year-old son frying a bit of bacon in the kitchen, a child who couldn’t understand why I would be angry about this. The most worrying time for me was when he turned all the hobs (gas rings) on and almost gassed us (We now have a safety switch located on the wall.) However Little man is now 11 years old and I feel he is that bit more responsible about stuff like this and doesn’t tend to act in these dangerous ways quite as much. Don’t get me wrong he is still so much more impulsive than most children, I’ve just banged on about the midnight cooking so much, I think his got the message!

 As he grew that bit older, I noticed it wasn’t so much him waking in the small hours that was the problem, more the fact he wasn’t settling to sleep at all. I got sick of hearing people’s advice when stating, “Take his computer away, remove the television from his room etc….” What people couldn’t grasp was the fact that these items had sod all to do with it! It was his mind he couldn’t switch off, not the television!

 Little man started taking Melatonin when he was 8 years old around 8 months before formal diagnosis which he obtained from CAMHS following numerous assessments (another post altogether). At first it worked a treat, I suddenly discovered that I’d spent the last few years a ‘Night Owl’ and now couldn’t adjust my own sleep pattern, just as I began making progress, Bang… the Melatonin would stop working it’s magic and we were back to square one! I really didn’t want my child receiving stronger medication, though I’m non judgemental to those that do take this route, I just felt it wasn’t for us. 

 I learnt that by stopping and restarting the medication it worked better, nonetheless this was only for at a few weeks at a time, meaning I walked around with permanent shopping bags hanging from under my eyes. Little man spent a lot of the earlier days out of school and at home sleeping! I knew that the best way to deal with this was to get tough and keep him awake tough-out the day in-order to sleep at night, but trust me, it wasn’t easy! Have you tried to wake a child who can become very aggressive at 7.30-am given he only went of to sleep at the ghastly hour of 5-am? As mentioned Little man didn’t begin on any type of medication till he was 8 years old, yet we had been faced with the reality of sleepless nights from day Dot. 

 When Little man started reception at age 5 years, sleeping was already a big an issue as ever and by the age of 7 years the school already had the education welfare officer on my back. I can honestly say that it was at this very period of my life that I was the lowest I have ever been to date. I was taken to court and fined like some careless mother who couldn’t give a rats arse about her child. Yet here I was screaming at the top of my lungs, “I need some help here” yet it felt like no one could hear me (the cold hard reality was no one wanted to hear me). I was just 24 years old then, seen as a young mum without a clue! The court went as far as to send me to parenting classes and stick me on a parenting order. 

 It was back then I lived my life on red bull and expressos, weighed a little over 7 stone and booked myself into a counselling . Little man’s Asperger’s syndrome was now at its height of making itself known. My own child would hit, punch, kick and bite me. I remember one day falling to the ground sobbing, I looked up to see him stood before me laughing. His grandmother later asked him why he thought it was funny? His answer, “Mummy had a red face” 

 It was such a long deliberating fight to get him on the CAMHS waiting list and I released that It was only me that could get him there. My therapist, who was a god sent, said to me during one session, “You’re not a bad mother, go with your instincts” that was the best advice anybody could give me back then! I refused to listen when teachers told me rubbish, implying it was his home life that was the issue, always telling me they saw no issues at school (note they forgot to mention to myself or CAMHS that he had been placed on the sen register, and was bullied for mimicking the opening and closing of a train door) these were things I didn’t discover till I wised up and requested his entire educational record under the freedom of information and Data protection acts when gearing up for a discrimination case. 

 I think that the school expected miracles once little man started on the Melatonin. He would constantly be brought in late, given I had spent the last three hours trying to get him up dressed and out the door! I always got dealt the same insulting comment, “What did you forget to give him his sleeping meds last night” Yer…. right, of course I bloody did. It always rattled me a little more given the fact I’d not slept a wink and spent the morning trying to persuade him to remain in his clothes instead of stripping and running away. It still makes my blood run cold, how quick someone who is meant to be a professional is so quick to judge. 

 Of course I ended up back in court, thankfully the parenting order was scrapped, nonetheless I was still fined for the hard fact that yes I was his mother and regardless of any medical reasons and so forth he hadn’t been in school on so and so day so I was therefore guilty. Can you believe that the head-teacher wasn’t able to come due to school commitments and as my sentence was said out that same head master was busy leaving me a voicemail, informing me my child was excluded for 4 days (the 3rd exclusion in around a month)! No, they were no longer stating he was the angel at school like they once did!

 It’s fair to say that his sleeping issues that are a result of his Aspergers syndrome, have had a huge effect on our lives and my (looks, ha-ha seriously bags and wrinkles are not a hot mamma look)!  My point is, lack of sleep has a huge impact on everyone’s ability to function in everyday life, combined with the effects of poor social interaction, the ability to see an-others way of thinking, anxiety and the day-to-day pressures of life itself makes life a lot more pressing for a child on the autism spectrum and therefore the family too. 

 The new medication is taken in tablet form which has been a bit challenging as his so used to the capsules. I’ve noticed that once taken his much calmer within the hour. He sleeps well though there are still nights that it starts lacking in its benefits so again we need to break for one or two days, I try to do this during weekends but sometimes it’s the case by mid-week. Despite this the medication is actually much better then the last one which was actually having no benefit at all. 

 The first week of the new meds there were a few side-effects such as a hangover effect on wakening and he become much more emotional, crying on return from school for no particular reason. He also felt really tired and would fall asleep as soon as he walked through the door, which isn’t something we are not used to, and not really ideal when he has to sleep through the night. I must note, however off-putting these side-effects may sound, they lasted a little over a week, then began to disappear so to push on is the key. 

 If you’re a parent and your child suffers from difficulty in sleeping it can have a massive impact on your life. Little man is under the sleep clinic and although things are not always great, there is the odd few nights we get a great kip which compared to what its been like previously, its good progress. 

 I would advise any parent, whether their child has a diagnosis of autism or not, to go with their gut. Don’t suffer in silence, a GP can make the appropriate referrals and is able to prescribe a medication such as Melatonin (those in the states can obtain this over the counter and looks something like the image above). You as the parent need sleep in order to do the best job possible in raising your child, seek advice before it gets any worse (and believe me, it will)!

The stranger who got right on my wick

31 Oct

I like to write about the positive side to Asperger’s after all the first two years of this blogs content, was filled with nothing but rants, brought on by a mix of discrimination & my battles in obtaining appropriate education for Little man.

 However, I’m really sorry to do this to you all, but this is in-fact a “Rant” 

 Sometimes life isn’t all rosy and you need to unleash the not so good stuff… Today is one of those days!

 There are a few things troubling me that I need to get out my head and onto the blog, somehow just letting my fingers do the talking for me, helps me to adapt my mood and somehow go about getting on with things.  

 Now, the first is one that I’m convinced most will read and think, “Get Over It” and to be honest if you did, you would properly be right in thinking this, I should just “Get over it” I know this! However there are some days when something like this happens and it’s just the icing on the cake (so to speak)! 

 What am I rambling on about, I haven’t even told you what it is troubling me, yet here I am trying to justify my own thoughts! Well, basically I am hacked off by a person I’m pleased to say I have never had the privilege to meet, a complete and utter stranger who really shovelled a generous amount of judgemental bull in my direction! 

 So what! I deal with this shit daily, right? True! However I wasn’t in the most stable mood this day (Note this was a few days back) I was actually darting to a Halloween party in an attempt to save my panicking 11-year-old with a diagnosis of Aspergers, from a pending firework display. My iPhone pinged and alerted me that I had mail (email) this is when I discovered the comment below. 

I was reading that one difference between boys with aspergers and girls with aspergers is that girls mimic people around them and end up blending in with neurotypical people. I believe aspergers has a genetic base. I think you and your daughter also have aspergers. It also sounds like you favor your daughter over your son, and he notices and resents it. The most annoying thing with mothers with aspergers is that they think the way their children are acting is somehow done on purpose just to frustrate, like they thing they are the center of the universe, them when in fact children with aspergers are just trying to do what’s best for them.

  Yes, I’ve had crap like this before but this however really rubbed me up the wrong way. Now here’s what drives me that bit more crazy… You get dealt this type of ignorance, become somewhat fired up, yet all you can do is leave an angry “Mind your own business” reply, containing a fair portion of swear words (which I just about reframe from adding) as well as a load of typos that occur as a result of your mad frantic typing! Then you wait… and wait… In reality I don’t want to get into some full on bitching match with this numb nuts above, yet somewhere muddled within the haze of my angry mind, I want to see his response and I want it now! Yet it never comes, ever!

 I’m my head I was screaming you cheeky patronising *#¡# how dare you read just one, just one post and think you have the right to judge me as a parent! 

 What’s more, what right do you think you have to diagnosis not only myself but also my daughter as having “Aspergers” Goodness me, you have never even met either of us. 

 Oh… and you can cut the other crap about my son acting out his aggressiveness in the direction of his sister because he feels she is my favourite, thankfully you really don’t know me.

 Yes, this asshole thinks he knows it all, when actually he doesn’t even know the slightest. I don’t care if the individual has a diagnosis himself or is even a parent, he still has no sodding clue about me and my family!

 Here’s the thing people! I spend hours punishing myself mentally, due to the guilt I feel every single day! Guilt towards my daughter! Why? Because she deserves so much more attention then I have been able to offer. I spent days and nights, writing to schools, filing in complaint forms, collecting evidence for a discrimination case and more besides.

Then there were and still is the trips to CAMHS (child adolescents mental health service) the nights he sleeps in my bed though his far to old, yet if my daughter asks I have to state she can’t and this is purely because Little man would never sleep and likely complain with every movement she made. So, why not refuse to let my son? Consistency is sometimes hard to withstand when its 4am and his been sat outside your bedroom door since midnight in tears! 

 So, when I sit there thinking about this stranger who I have never met, sat at his computer typing this judgemental bull, when this mother has not had a wink of sleep in three days I tend to become a little bit touchy! 

 I would like to state quite loudly that although I love my son with Asperger’s and try to activity embrace the diagnosis, No, myself nor my daughter have Asperger’s.

How this conclusion was drawn from that one post almost makes me want to roll on the floor laughing but at the same time really rattled my cage!

 Now, here comes trouble number 2! I’m worried that once more, yet on a worse scale, my son’s aggressive and growing violent behaviour is going to draw to a serious end but only when his seriously hurt someone (who knows, maybe this won’t even draw an end to it)! 

 At 11 years old his tall for his age, and is no longer the skinny little boy he once was. His gaining strength and today he punched and kicked me so hard I feel to the ground. This was only after he had finished with his sister and I’d tried to intervene. 

 I hear the same thing from high-end professionals who claim that removing the trigger will solve such issues, but what if the trigger is his sister, seriously she only has to like something he likes for him to feel it’s justified to give her a dig. Planned ignoring wont help either! You can’t ignore one of your own children who you love dearly beating the hell out another, it’s just not  worth contemplating. 

Holy Macaroni Its A Panda

29 May

It’s around 1 P. M Friday 27th, May and I’m applying the last coat of mascara In my desperate attempt to become something of a yummy mummy, though human will properly do just fine (no sleep the night before makes this a challenge). The plan is to make myself somewhat presentable in-order to escape this house and the housework that comes with it and instead hit the shops before my little “cherubs” return home from school! As I grab my handbag and a pair of lifesaving oversized sunnies (recommended for any tired mummy for hiding a multitude of sins ), I set off for the door where I’m greeted by our “ever so friendly postman”.

Bills, bills and more bloody bills… Hang on what’s this??

Err, I hate surprises, in my experience surprises put through my letter box are not usually the welcome type!!

I tore open the envelope and began to read… blah… blah… blah… “Holly Cow!!” I couldn’t quite believe it! I read it again, then again, then yes, you’ve guessed it… AGAIN!

My eyes start to blur, a tear drops onto the paper, closely followed by another, they rapidly increase in-till the words written within the letter are no longer recognisable.

For once these tears were not caused by sadness, but joy, relief and gratitude! Throwing my head back, I looked up above and said aloud, “Thank you god, thank you!”

My Little man had just been given a chance, a way through, a future!

This letter was from a school, not just any school but one that I have been keen for little man to attend for some time. (Keen being a slight understatement!) The school is fully independent and even better it’s an autism specific school.

Holy-Macaroni… Its so long since anything went right with little mans education that I was a little unsure how to react. Is it appropriate to give it some… “Woo-hoo get in there my son!!” (Quite literally) How about engaging in a little victory dance? One things for sure, as ecstatic as I was, something seems to be holding me back from doing either!

It’s Just a school placement right!

It’s so much more then that for us, for Little man! It’s his chance! Shamefully it’s been a hell of a long time since anyone had been willing to offer my son such a thing!

Do you know how it feels to suffer rejection over and over again? Maybe you do! But how many people can honestly say they knew that feeling at the young age of ten? I’ve watched every last inch of Little man’s self-esteem fade away, I’ve seen & wiped the tears from his eyes, I’ve spent days and nights giving him reassurance, trying to repair the damage and help him gain back his confidence… only for someone to come along and undo it all again, all them hours, days and weeks to make progress… vanished in seconds.

The worse thing of all is the questions projected at me! I’ve had to answer questions no mother would ever expect nor want to answer when their ten year old child asks, “Mum, why can’t I just be normal” or “If there is a god, why wont he help me fit in?” These are a selected few… There are sadly many more, some I find I am unable to write, by doing so I become a broken mess with questions of my own! This accompanied with his tendency to self harm by throwing himself into brick walls or his scratching his arms till they bleed is the extent of damage been done at the hands of those that should have provided an education suitable to his needs while ensuring his emotional and metal well-being was protected from harm, but instead taught him that, “it isn’t OK to be who you are!”

My son went through something I wish for no other child or adult! He was discriminated against for being the person he is, because it wasn’t what was considered “Normal”, what society expects from a child! As his mother I felt somehow responsible for this after all it was me that placed him in this mainstream primary school! I finally did remove him from at the beginning of December 2010, which felt amazing for all. Being a parent who has a legal duty to ensure their child is in school has been a nightmare for me! I have a child with social communication difficulties who developed school phobia (Yet no one told me such a thing existed) why ever not? After all this landed me in court.

The above was a situation I was placed in twice and of course this was before his behaviour became unsettled & challenging in the school environment.

It was towards the end of year three that things change! Along came a string of both unofficial exclusions (aka Illegal exclusions) and fixed period exclusions with added threats of the permanent type on a regular basis. There was even an unsuccessful push towards a pupil referral unit (PRU). I decided to get myself educated on education law… More particularly that of ‘Special educational needs

When your child is excluded or removed form every school trip/activity, isolated and hidden on the day of inspections, then you know there is something very wrong happening! Just before our tribunal hearing for the case of disability discrimination, I finally agreed to settle. A formal letter of apology was given to myself and Little man, review and adaption of policies was agreed, and most importantly staff training in special educational needs and discrimination would be carried out by July this year! Having removed him from the mainstream setting he has now been out of school since early December last year. Yet before this time he was only in half days taught in isolation (himself and a TA) this or exclusion meant he was educated at home more then in school. Since January he has received home tuition, on a part time basis of five hours per day. During this time and also on this very day I have been battling for amendments to be made to Little man’s final statement of SEN. This had been so badly written and lacked so much provision it wouldn’t be worth having (In other words it was no worse then not having a statement at all) Of course the LEA wouldn’t agree to the high fees of the independent school and firmly stuck to their guns, Well… they did up in-till time started running out. Having searched high and low for a state run special school over an area of around four or five boroughs, with all schools claiming they could not meet Little man’s needs. The LEAs response to the tribunal on the 5th of this month therefore stated that they are no longer in a position to oppose pt 4 of the statement, “My request for the independent school” as they were unable to secure a placement anywhere else!

Wow.. This meant that the LEA had approached all the school’s they felt suitable for little man, yet all refused… Although I wanted my Little guy at the independent school, it was still disheartening knowing no one else were willing to give him that chance

The school had assessed Little man in the library setting on the 16th and just this week he took a tour of his soon to be new school. Although he states his never going to a school again and his now really attached to his tutor, something magical happened as he liked it so much he asked, “So, when do I start?”

A slow transition at little man’s own pace is planed. This will involve his tutor attending alongside him in the beginning gradually reducing the support as his confidence grows.

I won’t lie and say I’m not scared, I’m petrified! Yet something tells me to put my fears aside because this is where it all begins, this is where it gets better! I have the pleasure of seeing my child happy as over-time he rebuilds all that’s been lost and damaged along the way, while achieving his dreams & showing everyone that never offered such chances or failed to see him as more then a child with difficulties… what they missed out on! An Amazing boy With Aspergers

Oh, in cause you’re all wondering… Did I make it to the shops? Yes, I did, though I wished I had looked in the mirror before setting off! All that crying had me mistaken as a Panda bear that or battered woman

Remember if you like the blog and think me and the little guy deserve a nice shinny award then please vote us the most inspirational blog at the ‘Mad blog awards 2011″

Ignorance is bliss

3 Feb

It’s heartbreaking yet somehow comforting knowing there are other families facing the same battles.

I love that this blog has created a place to bring these families together.

Sometimes, despite our family & friends we feel so isolated.

Surrounding yourself with those that relate…

Is comforting & fills us with the strength needed to carry on with the daily …

battles the system brings!

I’ve heard so many horror stories from parents who in some way or another have been dragged through a system that leaves them both physically and mentally exhausted. Many will tell you, “It’s not their child’s condition that takes them to the edge… But the length’s they have to go to get that condition recognised and provided for!”  Most will come out stronger for it… what choice do they have? These are our children and we only want what’s best for them! Every child deserves an education, an understanding environment, a chance to succeed & be valued for the person they are.

Today’s post is not written by myself but from a dedicated reader who I’m so pleased contacted me to share her journey. In so many ways I related to her story, like I’m guessing many well… Helen is a single mother of three. Her eight year old son Max has a diagnosis of Asperger’s syndrome and ADHD… She talks of her challenge to gain his diagnosis and have him educated alongside his peers. Though Helen has been fighting this battle for a few years she still has some way to go… Here she tells us why…

I am a single mum with 3 great kids Lydia 11, Imogen 10 and Max 8 and a half. I’ve been bringing up the kids by myself since Max was 9 months old. I suppose I’ve always known Max was different but things started to go wrong when he started school. I’d already expressed my concern to his reception teacher before he started but this fell on deaf ears and they wouldn’t even consider a statement even though his pre-school teacher had already recommended one. To cut a long story short,  every time I picked him up from school I’d be taken to one side by his teacher with a look of horror on her face and asked to explain his behaviour which of course, I couldn’t do as I’m not a child physiologist. I couldn’t understand why they seemed so shocked and surprised as I had already stated that I thought there was a problem but still they wouldn’t request a statement and I felt they were laying the blame on my parenting skills. The pressure became too much and soon i was overwhelmed. i was already being treated for depression(postnatal after Max was born and after the breakdown of my relationship) eventually i had a complete nervous break down and the children went to live with my parents for a few months while i recovered. they went to a brilliant school while staying with my parents and Max’s teacher was sure that he was on the autistic spectrum. When the children returned to me and back to our local school Max was referred to the schools pediatrician who diagnosed him with DAMP. Things still didn’t improve and by this time he was regularly being excluded. He was seen by the ED physic and she very helpfully suggested that Max’s issues were down to him not feeling he had  control in his home life(he was 6 at the time) and that mother was known to have mental health issues! Thank you! Although we’d had our problems, the children have a very stable upbringing and the girls were model pupils with no issues at all, in fact they were excelling and still are! At every meeting (and there were loads)! Some teacher/armature physiologist would suggest that Max was emotionally disturbed so I went to my GP and told him that if my son was going to be labelled emotionally disturbed then I would want a qualified physiologist to tell me so and offer him and me( as they were so convinced it was my fault) some support. I asked for a referral to CAMHS but was told it was a school issue! This went on for years with endless pointless meetings and bad advice and opinions from people who had not even met Max. In the end it took me to break down in tears with snot everywhere after being summoned to the school again when max punched the head mistress in the face(and by this point, can’t say I blame him)! And beg them for help. He was finally referred to CAMHS and diagnosed with aspergers (heavily affected apparently) and ADHD. Just after this another expulsion and after that I was expected to take Max to school at 9, pick him up at 10.30 take him home, take him back at 1 and pick him up again at 2.30. After the ADHD diagnoses I felt the pressure from the school to medicate Max and he was prescribed Ritalin. I was very uneasy about this and it worried me that the school seemed so keen. It may have made a slight difference in his concentration but I saw little evidence of this, it did however decrease his appetite and have him bouncing off the walls at night. Max has major food issues probably due to his amazing sense of smell and it’s a real struggle to get him to eat at the best of times and I probably don’t need to tell you about sleep issues! All I know is that the Ritalin made his senses and anxiety go into overdrive and was making him ill so after long discussions with the GP and CAMHS  took him off. This was frowned upon by the school and he was excluded that day. I went back to CAMHS and agreed to give another drug a go. Straterra. he took it for the first time on Thursday which was also his first day back in school after me keeping him off for a week because of the latest exclusion. While I was in the heads office discussing the new arrangements a TA came in and told us Max was being disruptive and seemed very tired and was told to take him home for a rest. He was up most of the night the night before because he didn’t want to go back so took him home and laid with him in my bed to try to get him to get to sleep. He suddenly started pointing at mid-air and asking me what was going on because he was seeing flashes of colours! I immediately referred to the literature that was given to me about the drugs but couldn’t see anything about it in there so I looked at the leaflet that came with the drugs in the packet. CAN CAUSE HALLUCINOGENIC EPISODES AND PSYCHOSIS!! I phoned CAMHS and was told not to worry and keep going and told the school about it and they dismissed it and said it would take time to get used to the drug. OH! That’s Ok then! When I took him back this afternoon he started seeing colours again and seems very lethargic and this is frightening him. He describes them as scary /pretty colours. Again the school are not at all bothered. Is it me?? Am I losing the plot to be concerned about this? Does it make me an over protective and neurotic mother to be worried that I might be giving my otherwise healthy child a drug that could make him mentally ill instead of a drug that made him physically ill just so he fits in with societies rules and makes their job easier? Nothing makes sense to me anymore, maybe I’m the one that’s ill! His statement was still 5 months away at this point and by this time I’d found your blog(a god send by the way) this helped me to realise that the statement would probably come back and bite me in the arse anyway so I told the school that I was very unhappy with the way things were going and was concerned about his lack of education so I wasn’t sending him back. On top of all this, I’d been offered a place on an early bird+ course arranged by CAMHS and specialist teaching but was told by the head the day before that I wouldn’t be able to go because they didn’t want Max in school for a whole morning. I was devastated. I desperately need to meet other families like us and need to learn as much as I could. Thankfully early birds have offered me a place in the summer and recommended a book by Tony Atwood which I’m reading at the moment. A meeting was called at the school last Monday where they persuaded me to hang on until the statement comes through and have promised to arrange to have Max until 11.30 and then for me to home educate in the afternoons. I suspect they were given a bollocking by the specialist teaching service for not supporting me. Ok, I’ll give it a go, but I’m not convinced. He didn’t even make through the doors this morning before I was asked to take him home and bring him back at 1.

My issues are that they have treated me like I am the worst parent in the world for long enough. I have done everything that has been asked of me and it’s them that keep moving the goal posts. I’m sick of being patronised by them and it really annoys me that suddenly everyone’s an expert on aspergers ADHD and Ritalin when they clearly haven’t got a clue. They keep telling me that they have never had a child in school like Max and refuse to believe that I do not have the same problems at home. Max is a funny, loving, good-looking (he gets that from me) charming little boy with a brain the size of a planet and he deserves much more than this. He’s being treated like an outcast! How the hell is he gonna come out of this with any sense of self-worth or prospects? Fast coming to the end of my tether and don’t know where to turn next. They treat me like I’m stupid and incapable of making informed decisions. Max has been badly let down by the system because they were too busy judging me! I am beginning to realise that we are at the beginning of a very long and exhausting journey and we will have to fight for everything. I feel very alone and isolated especially with the school timings, I feel like I’m under house arrest! Trying to take one day at a time at the moment but I lie awake at night worrying about the future. At the moment I think Max is shielded by his aspergers, he doesn’t seem to notice or care of other people’s reaction to him. I’m sure this will change in the near future as he gets older. Friends with kids have moved away from us and friends without kids just don’t get it and just see him as a naughty boy. Basically we keep ourselves to ourselves now and pretty much don’t see anyone. I couldn’t be more proud of Max, he’s such a brilliant kid! Him being diagnosed with aspergers came as a huge relief but it has also broken my heart as I’m sure you will understand. Another, unexpected twist has come of this as well. The more I learn about this condition, the more I am convinced that I have it as-well. Not to the same degree as Max but it explains a lot about my life. I have always felt like I’m on the outside looking in. I have always wanted to fit in but never quite managed it. Now that I’m older this doesn’t bother me as much. I find most people superficial and selfish. I’m quite happy in my own company and quite often go out by myself and just people watch. Even when I’m surrounded by people I still feel alone. It has never occurred to me before because even though at times I can be quite reclusive when I’m out and about I have a whole other person and I’m very charismatic (or so I’ve been told) and out going. It appears on the outside that I’m quite confident and comfortable in my own skin but actually I have a very low self-esteem. I read that aspergers can be more difficult to spot in girls because they are more able to hide it. It’s slowly dawning on me that I cope with some social situations logically because I don’t seem to understand the rules. I’ve spoken to my parents who are also learning all they can about aspergers and they are beginning to think the same. I reckon it has come from my dad’s side of the family. Not sure if I should push for a diagnoses or not as it’s probably too late anyway but it might help me understand some of my demons.

I’ve decided I’ll hang on till the statement comes through but unless he is offered a place in a school that welcomes him and understands him I’m pulling him out and home educating. There has to be a place for him somewhere and any where is better than this.

By Helen (Mum to Max)



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