The Challenges That Come With Independence

So, its been a while since I blogged, all reasons beyond my control.
Well, Little man is officially a teenager now. On the 1st October he turned 13.
As a result his special school felt that he was ready to make a huge step forward into the world of independence.
Instead of of being collected by the school bus every morning he would walk to the train station through the park, take the 20 minute train ride followed by short 5 minute walk to school. Was I hesitant? Of course I was, what mother wouldn’t be? You see, little man had an intense ‘Special’ interest in trains that lasted many years. He was therefore very excited about this big new step he would be taking! Me I was worried sick that firstly we may find him over obsessing about transport once more. It may seem harmless to most but when a child with Aspergers is obsessive nothing else in the world matters.

This however was not my only concern! Little man is a child that struggles to sleep of a night time and if he had experienced one of he’s ‘All Nighters’ then how could I possibly let him ride the train to school? He could fall asleep and spend hours going back and forth to Hayes and Central London… What if he woke up in central london? At least if he was getting collected our morning battle would come to an end once I’d physically removed him from his bed and got him on the transport. But he hated everything about the new transport system, the one he had been placed on this September with little warning of any changes! Little man was used to taking a taxi with two other children and an escort which is provided for by the councils SEN team. This September no more than one day before the return to school he discovers that his escort has gone and will be replaced by another. He also discovers that there is no longer a taxi but a mini bus with a new driver and a heap more kids too. The battles to get him onto the bus were anything but easy! The last week before his independence training started someone from the SEN travel coordination team called me to say that little man was on his last warning! Apparently the new escort couldn’t handle the children, especially little man. I hear a fight broke out between my son and another boy. As a result the escort was pushed (not by little man but another child who as a result had been taken of the bus for good).

So, with this and little man’s pleas I decided that the transport plan drawn up by the school would probably be best at this current time.

To cut a long story short, since little mans been taking the train his had more days off than I care to remember! The first few days were fine. He loved the feeling of independence traveling to school gave him (he still does) however, his sleep pattern has once more gone up the wall and getting him out the door has been a fight that I’m losing. Even when he has left for school his been leaving late. With this and the constant warnings, Little man is on his very last chance and this time its with me!

I’ve made the decision to reintroduce the melatonin despite how its effects make him more drowsy during the school day. What else can I do? It gets to 4 am and I’m seriously at my wits end! Just the other night (well, I say ‘night’ but really mean early morning) I found myself screaming at him… “Why can’t you just go to sleep?” Only for him to look and me and reply “I want to but I can’t… I just cant.” its frustrating… Its frustrating for him, for me… And for the school, especially when they can see his a bright young boy with heaps of potential.

I find myself becoming so angry at life, for we go through these battles, get over them only for them to resurface months later. Its one hell of a rollercoaster, one I have no choice in riding.

Little man doesn’t tend to talk about thinks that may have upset or confused him during the school day, which sadly can lead to all sorts of difficulties, leaving me playing the private eye game. Switching of isn’t easy for most, especially when we have worries and troubles laying heavily on our minds. This for little man, a boy who has difficulties expressing them worries, a boy who already lacks precious sleeping hours, is a struggle on a level most would fail to reach. Its stuff as such as this that makes those morning and night battles that little more difficult than it currently is.

I do sometimes wonder how many other parents there are out there… Going through the same nightly and morning battles that we do. I know there are plenty but at times its a real lonely place.

Sleeping Issues

Having a child with Aspergers can be difficult but having one that hardly sleeps is Incredibly trying.

For this reason little man’s school attendance is suffering and so am I… Big time!

Its one huge battle to get the boy to bed of a night and another to get him up. His like a monster in the mornings, swearing and throwing things about.

As his grown so has the problem. His now as tall as myself so grabbing the covers, carrying him out of bed and then physically dressing him is no longer an option! Well that is unless I want to live! Not only am I going to land myself back in court for little man’s shabby attendance I’m also struggling to get anything done during the day. Shopping is already a nightmare and I’ve given up on taking little man some time ago. This means just a quick trip to the shops has become some type of mission… One I’m not to keen on taking.

With this I have no choice but to visit the doctor and request a prescription of melatonin. Its not fantastic but given his had a good break from it, its effects will be beneficial over the next week or so at least.

So… If all the above wasn’t bad enough Little man is now spending his days bullying his younger brother rather than getting an education. Its not bully as such, its just his need for control and when his not at school or in bed catching up on the sleep his lost his doing exactly that… Trying to control everything everybody does. Its tiresome!

We are now in July and what happens in July? Little man starts preparing for his big day… Aka his birthday. Its three whole months away but that don’t make a difference… Not for the little man it doesn’t!

This year his talking computers… Macs to be precise. Yes, his not asking for anything cheap here and I think I preferred it when he was asking for them strange and wonderful items such as batteries and staple guns! There is one good thing to come out of the obsessive birthday chatter! If he wants something on such a grand scale his going to need to go to bed earlier and attend school everyday! After all he only has a week left till the holidays.

So… There you have it! Sorry its such a mini update but as you may have noticed, I don’t have so much time to get on and blog these days. Here’s hoping the next instalment is a little more upbeat.

Sleep is the enemy

Just when you think you have got it right… Found the perfect solution, the answer to your long awaited prayers.

I don’t know! Maybe if I was given the opportunity to go to bed at 10pm and actually sleep a whole night, I’d fail at the task miserably. You see, once your used to that routine, the one involving very little sleep, you get used to it and get on with it.

We did think things were improving, well, they were! Little man was still sleeping late, but he was sleeping and that alone was fantastic. We changed from the bog standard melatonin for the slow releasing type and boy did we see improvements.

Not only was he going to sleep… Late but not as late as he can do. He was actually remaining that way… A sleep that is! Because this was a slow releasing melatonin it meant no sudden wake ups for the toilet followed by the hours of pretending to be Drew McIntire his favourite wrestler, who keep his mind racing till the small hours.

Like all melatonin, little man became used to it and therefore developed a certain amount of resistance to it. This just meant taking breaks in between. I would just not give him it on the weekends or holidays. Despite this messing up bedtime routines for a day or two, the benefits gained when reintroducing the med was more than beneficial.

But then I started to note side effects, ones that started to, and are continuing to impact on Little man’s ability to receive an education.

The slow releasing melatonin made it extremely hard to get little man out of bed in the mornings. It was as if it was still taking effect. I started to feel like I couldn’t win. Either I struggled to get him up through lack of sleep or now because his meds were to effective. How ironic!

This has resulted in little man missing some school these past few weeks. Its been like trying to wake the dead some mornings… Simply impossible.

When he has been at school, they has been a number of noted concerns from all teachers. It seems that his just not able to concentrate. His either hyperactive (which is normally when he has had no melatonin and overtired) or his almost falling asleep in class and is far from himself. School reported that the Melatonin seems to be continuing to do the good work it does during the night, throughout the day.

With this I lowered the dose following talks with the GP. However, it still seemed to be over effective during the cause of the school day.

I’ve now made the decision to stop it all together. This was the beginning of last week and as a result his just had so little sleep which means so have I! Daddy took the toddler out yesterday as apparently I myself was unresponsive and was therefore left to sleep an entire day. All I remember is waving the children off as they finally went to school… Little man who had only a few hours sleep included. Next thing I was waking up to them returning home at the end of the day. I quite literally sat up from the chair in a confused and somewhat panicky state. Well, it did take me a few moments to remember the toddler was with his father and not off fending for himself.

During my daytime kipping, I had missed a couple of calls from little mans school who wanted to chat about this very issue I’m writing about now. I’m hoping to get back to them today… Or tomorrow If I’m able to remain awake.

Little man had a slightly better night last night. He feel asleep at around 2.30 am, which is actually a ground breaking improvement given his melatonin free. Myself however, no such luck. I laid in bed, eyes open most, if not all of the night. By the time it gets to 2.30am I’m either overtired or just to scared to sleep with the fear I will not wake up.

For now we are weighing up our opinions and will visit the GP again next week. I really don’t want to use any other strong form of medication and am considering requesting to our an appointment at the sleep clinic.

In the meantime, I will also be doing all I can to try and get the little man to burn of excessive energy when he returns from school… Maybe a walk around the woods with my mum and her dog may do the trick. This is something he really used to enjoy but sadly does little off lately.

Well, that’s all… I’m actually nodding off now so better go splash my face with ice cold water ready for the children’s return.

Dream location – The Land of Nod

Drip-drip-drip…. The dripping tap that echo’s throughout the otherwise deadly silent house!

 Tick-tock-tick-tock…. The noisy seconds hand on the grandfather clock that drives you completely insane, so much so you jump from your bed removing its batteries!

 Buzzzzzzzzzz….. The dull jarring buzzing you hear coming from the fridge freezer, just as you’ve almost arrived in the land of nod.

 Have any of the above driven you to hold a pillow over your head in the hope of drowning out the annoyance of white noise or maybe even snoring? If you happen to answer “YES” then I envy you, I really do!

 No, the above is not a typo, its true, yes, all of the above are annoying, that I do not deny, but all three of these scenario’s can be easily fixed (even the added addition of somebody’s terrible snoring)! OK, you may lose a weeks food shop by switching off the freezer, but you can do it all the same!

 I however, cannot switch of my children, although I have sometimes wondered why on earth god didn’t make them with batteries? Some nights are better than others, it’s the others that are currently driving me to write this post which I’m guessing consists of nothing more than rambling, the kind that likely makes no sense! Please bear with me, last night was actually one of those nights!

 Anyone would think I was used to it by now, after all Little Man is 11 already and hasn’t ever really slept an entire night, well not properly anyway. Since his been on the slow release Melatonin, his engaged in a lot of sleep walking and talking so his often up and about even when he is a sleep, which is often not in till some point during the early hours anyway.

 Although I try to embrace Little Mans Asperger’s Syndrome, seeing it more as a gift rather than something disabling. Sleep (or lack of it) is most defiantly one of the hardest issues we have had to deal with for as long as I care to remember.

 Generally I deal with the lack of sleep reasonable well, discounting the time I fell asleep queuing in the supermarket (and yes I was standing)! My head, well that’s somewhere else altogether, seriously, I can’t survive forever with my brain functioning as if it belonged to a chimp ! My point is, I guess I’m used to it and although I don’t get the average amount of sleep many manage, I get by with  grabbing hours here and their, well this used to be the case at least!

 Harley is my youngest son, he was 2 in December. I was blessed with a child who slept throughout the night pretty early on. Day time napping was now however out the question, unless their father was around and when he wasn’t I was basically #•@#@• Then something much worse started to happen, Harley started sleeping less, a lot less! This finally came to a head last week when he demonstrated his stamina in withstanding an alnighter… yes, he stayed awake the entire night falling to sleep at an unforgivable 6am, I was broken, no not physically (that comes in later) but emotionally… was it not enough to have the one child sleep in such a crazy manner… but two… come on give us a break! Of course I explained it away to myself as “His coming down with something” but he hasn’t and its been 5 whole long sodding days and nights. Actually as I type this my eyes are partially closed…. God help me if my Mac ends up on the floor.

 I don’t know why the toddler is suddenly like a child on red bull, but me, I don’t like it one little bit! Of course his then hard to wake and this is when tantrums come into play as his over tired and I get tempted to let him just sleep! It’s an extraordinarily difficult situation to be in when your tired and feeling like you’ve been smashed in the face by a double-decker bus! However, I will try my best as I fear it may lead to more nights like that of the night before. To make matters worse regardless of  him becoming extremely tired, often resulting in him falling into an uncontrolled heap between 8-9 pm (which I note is still reasonably late for him) he still somehow manages to wake up before the clock strikes midnight! Oh… and guess what? He only goes and becomes the life and soul of the party. I’m in trouble if Little man than decides to come out his room engaging in some weird activity as for some reason he’ll suddenly acquire a very sudden interest in his brother, the same brother he screams at to get out his room everyday!

 This was what happen Monday Night Tuesday early hours… I wanted to scream, correction… I did scream… Loudly! Closing the bedroom door, I laid Harley done beside me, however sleep wasn’t on his crazy toddler agenda, he had more exciting things planned, like demonstrating how well he can jump on mummy’s bed and the lovely art of body slamming, with myself being his chosen victim (you know, like those over grown and over weight men who pretend to throw each other around a ring).. Worse when your eyes are closed and it completely takes you by surprise… Ouch…

 I pray to the lord that this is some kind of toddler rebelliousness, one that Little man nor their sister luckily never experienced (through little man more than made up for his lack of tantrums by age 7 and continues to today)!

 Now feeling like a sack of crap, I have important business to attend to! Oh, how I wish that business was in the role of a mid mornings nap…. Sadly it’s tending to the cat litter tray, a sink full of dirty cups and with a bit of luck a ten minute soak in the bath (I hope)!

 Quick Note: If anyone has any tips on helping both an 11-year-old boy diagnosed with Aspergers syndrome and that of a toddler of 2, learn the unwritten rules of sleeping and remaining that way, please do comment! Plus I would love to hear from anybody who has a child on the autism spectrum who happens to sleep walk, sleep talk or both (this is as though  they are literally always on the go)! Even more so if such behaviour is happening while taking a slow releasing Melatonin (only this is when the sleep walking and talking increased for Little Man)?

 Thanks for reading my ramblings and I bid you all goodnight… Oops I mean good-bye!

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Melatonin for the child with autism

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)!

Related articles

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A somewhat weird Halloween

Yesterday was Halloween, and in all honesty it was a bit of a weird one.

Alice-Sara returned to school following the half-term  Little man didn’t return in till today. Nonetheless, I wasn’t having him remain in bed all day and he did finally get up after much debate & a pretty standard meltdown!

After giving the kids some breakfast, my youngest took a mid-morning nap which surprised me as he hasn’t done this for quite some time, however, with the bubba asleep and little man refusing to budge from in front of the television to let me watch some ‘This Morning’ I decided to sneak upstairs and indulge in a little twitter before catching up on some reviews (though it’s not like there wasn’t more practical things I should have been doing like, de-cluttering my wardrobe). Oh yes, the lack of wardrobe space I can no longer ignore, as much as I hate getting rid of any of my clothing some of it has to go (with the exception of footwear) that’s a big NO, NO.

Later I needed to head of to the doctor’s surgery to pick up the Little man’s prescription for his Melatonin, which has been change to a different brand as a result of the National health cuts. This basically means, he will now take a brand of Melatonin called ‘Circadian’ given in the form of a tablet, instead of the capsules he was on before. I had also raised concerns with the Doctor as the melatonin seemed to be wearing of quite quickly (or not working at all) The new medication is a prolonged release and can you believe it, I woke up this morning only to realise that Little man hasn’t woken all night not once! ‘Please God let this continue!’ This was the first time I have slept all night in… I don’t know how long!

I also had to see the Doctor who was strangely dressed as a vampire in the spirit of the Halloween. “Um… Yes, this was a pretty strange experience given I was there to talk about my need to change contraception”! This wasn’t something I saw myself doing when I woke up that morning, discussing my women’s business with a blood sucking vampire with fake blood running down his chin!

Next stop was the local chemist to exchange my prescription for something that would get the Little man some much-needed kip. This was just as weird given I was served by a teenager in a cat suit who wore the most freakish set of contact lenses I’ve ever come across (completely white with a little black pin dot in place of a pupil)!

The next stop would be my mothers to collect the children, as I walked the short distance I was passed by cute little one’s dressed in adorable costumes, trick or treating with their parents. I also passed the local yobs egging the bus then running away from the neighbour hood patrollers, “It’s all found and games where I live”!

Just when I thought things couldn’t get any wackier, as I approached my mothers turning, I noticed some random middle-aged guy rolled in a ball laying on the pavement This man was either trying to save a parking space for the wife, or maybe even dead, I wasn’t sure! Well, me being the tit that I can be, “Occasionally” decided to be a  good citizen by asking him, “Excuse me, are you dead” “Come on… if he was, I wasn’t going to get an answer was I !” Sometimes I ask the most stupid questions, but I blame it on having kids 🙂 Well, the good news is, he wasn’t dead, just as pissed as a fart, I did try to warn him it would be an idea if he moved on, (not that he was bothering me, I could just see him getting egged by the rotten lot at the bottom of the hill). He mumbled and then went back to sleep. I tried, but had kids to collect, so went on my way.

Once at my mothers I told my little sister what I had witnessed, it was only then I discovered he had been there some 3 hours before, as my sister  had seen him when collecting my daughter from school! She informed me that some local people who live in the houses near where he was laying, had tried getting him up but he wasn’t having any off it! With that I called the guys in blue, and expressed my concern. No one deserves to be left In that state no matter if it’s self inflicted or otherwise. Well, someone had to move him!

I left my mothers an hour and a half later to see the blue light only just approaching. The poor drunken dude was still laying there on the ground only now he was covered in eggs from his head down to his toes, good job the police were there at last, otherwise I fear he may have been eaten by a hungry fox or two.

It had been an eventful evening, the trip to the surgery had saved me from an evening of “Trick or treat” my sister took them instead, though I felt no guilt when tucking into their sweets when they were sleeping,! They had so many I was sure they would never notice, of course Little man proved me wrong with the screaming and shouting this morning! I’m sure the neighbours came to the conclusion that I had done a lot more than pinched a few celebrations and a packet of mix-up when he branded me a big fat thief, “Nice, I know!”

So… That was our Halloween, a tad strange and one I wont forget in a hurry. Honestly, I’ll never look at that doctor the same way again!

Well, here’s a belated Happy Halloween from ‘A boy with Aspergers’ we hope you had a spook-taculer time!

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Tonight is the night

Can you believe it, today is the day of the Mad blog awards Ceremony where the winners will be revealed.

I will be done up to the nines in my new dress and overly high shoes. Lots of makeup is needed (a paper bag even) as I’m sure I will have great big bags hanging from under my eyes, the kind bigger enough to carry a weeks shopping in!

Of course I haven’t had a wink of sleep, not even a tiny bit. We currently don’t have any melatonin for Little Man, (not that it does much good anyway) so these last few nights have been pretty trying.

My Sponsor OptiBac Probiotics have provided me with a beautiful hotel for tonight, so I’m not only looking forward to the awards but also a good bloody nights sleep!

Tomorrow is another big day in our household! It’s the Little man’s 11th Birthday.

This year I found we’ve had less strange gift request, such as padlocks, batteries and Dr pepper. This has been replaced with the request for money!

Sadly Little man seems to think the stuff falls out of the sky and I nearly killed myself laughing when he calmly yet politely requested the grand old sum of £400 (No my finger didn’t slip and accidently add an extra 0)!

Having Aspergers means little man normally has no shame in requesting the things he wants. Most children don’t, when the request is being made at their parents, yet little man will make such request to anyone who will listen!

His been requesting different sums of cash from a host of family members these past few weeks, so much so, that it’s driving me a tad loopy.

Another thing my son has a tendency to do, has done for as long as I can remember, is,

“ Ask friends and relatives bearing gifts, how much did it cost”

It’s times like these I feel to cover his mouth so he cannot speak. Someone gives him a present and I hold my breath in till I almost pass-out in the hope he doesn’t ask!

Of course I’ve explained that it is indeed rude, my child’s rigid thinking disallows him to see my point, he can’t get my way of thinking so therefore continues on his mission to find out the cost of his birthday presents and won’t rest in till he has.

This year he is off for a day out in London with his friend My younger sister will be doing the honours in accompanying them. Me, I’m not invited! He actually went about making his birthday plans without me! Charming I know! So I’ve decided to treat him to a nice Chinese meal in the evening.

So, that’s my Little update from my little world.

I cannot continue for I am simply zombied out, so apologise if this post is a load of meaningless rubbish!

If you fancy finding out how myself and the other finalist get on at the Mad awards tonight (that’s if I manage to stay awake through it) then you can follow the live blog where there will be live commentary and pictures posted throughout! This kicks off at 6pm this evening (Friday 30th September) just click HERE.

The need for mummy time

What a half term

Am I pleased that this half term has come to an end!

It’s very rare you will hear this mum quote such words. I normally dread the childrens return to school, but what with little man no long in his mainstream school I’ll be thankful for the break.

It’s been a long week. Little man has had little sleep, meaning I haven’t too (nothing new there then) Baby brother throw his smart phone into the mob bucket, where it stayed for 45 minutes in til it had been discovered, resulting in tears for a good ten hours, Little man drank a bottle of Carpol (yes a childrens’ pain killer because he likes the taste) and to top it all off I’ve had the worst stomach flu to date!

Tidying the little dudes room I came across an empty carpol 6+ bottle in his draw. I had been looking for this over the last three days to give to his sister who has been a tad under the weather, it was as if it had vanished, “Surely not,” I found myself saying aloud! I called little man upstairs and asked him why he had the empty bottle in his draw? To which he replied, “because it’s mine, you brought it for me!” I explained that this didn’t mean he could keep it in his bedroom and more to the point i asked where in gods name the contents had gone!

What came next shocked the bloody life out of me when he said as casual as like, “I drank it mum”

I felt my heart race, my stomach was in my mouth! I tried to stay clam but found myself shouting at him. This didn’t help because for the next half hour I had problems getting anything out of him at all.

I eventually unearthed that he had drank some on Sunday, Monday and lastly Tuesday Checking the bottle I established that the bottle was 80ml and recommended dosage for a child of little man’s age was 1-2 5ml spoonfuls 4x aday = 40ml aday max. So if he drank the stuff over a three day course then he should be fine. Then there was the fact we were now on Saturday, meaning he had last indulged in carpol 4 days ago. Regardless I felt dreadful that I didn’t know! what if something had happened! Oh my god it don’t bare even thinking about.

We had a chat and he just had no understanding why I was making such a ‘big’ deal of the situation! I really did overemphasize the seriousness of what he had done as a means to shock him into listening. He just looked at me with bafflement in his eyes, even laughing at one point. With my head in my hands, I felt lost! He likes it and that’s what matters (so he told me)

I got on the net and sreached online for a lockable medication box, which I found and ordered. All our medication is currently stored up very high on top of a cupboard attached to the wall in our kitcten. Little man would have had to climb up onto the sideboards in order to reach it. Still it had happened and thank goodness he was fine.

Another issue this week has been the constant squabbling between little man and his sister! Yer all siblings quarrel but oh my this is exhausting. Little sister has got to the point were she don’t take no more of his crap, but she’s also acting up a lot more lately. I think she feels a little left out! I think in her eyes her big brother is always doing the wrong thing that somehow leads to him getting attention (good or bad it’s still attention) I’ve notice my little princess who honestly is 99% well behaved has been doing a little back chatting, feet stomping, door slamming this past week. Maybe some girl time is needed.

Well for now I enjoy a drama free half peaceful day (let’s not forget, I do have a 15 month old requesting mummys attention throughout the day and his showing no interest in taking a mid-day nap as yet.

So bye for now, this mum is off to play with building blocks and peek a boo.

Enjoy your day/evening everyone.

Ignorance is bliss

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)

All burnt-out!!

So with no school little mans sleep routine has gone bonkers. It’s gotton so bad that were lucky if he sleeps at all during the night… But here’s the problem… His sleeping throughout the day! I’ve tried my damn hardest to keep him awake during the day in-order for him to be tired by the time evening comes back a round. But it’s just not happening! If he is tired and wants to sleep in the day then trying to stop this is a risky operation Abuse and meltdowns are likely as a result. He will often sit swearing while crying (swearing normally directed at me) this means his getting zero work done, as trying to home school a child who’s been up the entire night Is a challenging job for any. But with the baby needing constant attention it’s even harder to conquer.

Well the good news is little man should be working with a tutor hopefully at the local libary ( I can’t see it working out at home, to many distractions) The tuition is for 5 hours a day 5 days a week. So that’s a total of 25 hours which Isn’t a full time education but it’s better then the nothing his receiving at present. I will at least be able to get things done that need doing without the constant worry of having to drag him from his Pitt encourage him to dress in-order to come with me when I need to put some food in the cupboards “Its not great making your ten year old aspie follow you round the supermarket when his howling abuse and throwing himself into the boxes of cocopops because he hasn’t slept the night before and anything and everything is a potential trigger” So for most of this week I’ve just left him to it, if his gonna sleep the day away so be it! He won’t have that choice for much longer! My god his going to be a zombie… I can just see it!

Melatonin is something I’m fast giving up on. It is having little if not any effect on him whatsoever.
Maybe another visit to the doctors is in order! Though I hate the thought of strong meds, I just don’t think we can do this anymore!!

When little man was four years old I once woke to find him cooking some bacon at 4am. “Remember that this is a four year old boy I’m referring to” I swear it was the smell that rose me from my bed. I half sleepingly staggered down the stairs thinking it must be his father who was over for the weekend. I walked into the kicthen… “Bacon Mum?”
The sight that greeted me took me from a half dazed and confused woman to a fully wide awake screaming mother!! He looked at me as to say “what’s the big deal here, it’s just a bit of bacon”

You see I grew up as a child suffering from bad OCD. I concealed it for so long it finally drove me insane and age 12 I ended up in hospital.
I had a loving family and great homelife… But deep in the background, buried in my head was the horrid monster that was OCD. I dealt with it alone for five long years without ever telling a soul and as a child this was a lot to contend with. The OCD first reared it’s ugly head when I was just 7 and it all stemmed from anxiety brought on by the fear I had developed of fire. It was the wake up get a smoke alarm ad on the tellvision that kicked it all off. The advertisment showed a lit cigarette fall from the ashtry onto a brown leather Chesterfield sofa that happen to be the exact model we currently had in our home. I checked my mother’s ashtrays filling them with water to ensure nothing was alight. I counted plug sockets to ensure they were switched off. I couldn’t reason with my own mind… It was ludicrous I know! But your powerless to control the urge. I would end up rechecking 8 times plus a night… So to see my little 4 year old grilling a bit of bacon and the prospect of what could have happened shook me to the core. For a whole year after that episode I found myself counting and checking once more… Like so many times before!

Being a parent naturally means you worry more about the things that could put your children in the danger zone, however I constantly worried to the point I was driving myself la-la!!!

My point is little mans fearlessness became my fear! Inevitable Little mans sleeping problems became my sleeping problems too. He never slept because he didn’t have the natural ability to shut himself off from the world, from his thoughts and interest… I didn’t sleep because I needed to watch my child and ensure his safety along side everyone elses. This had became the norm and continues to be for the forseeable further.

In late 2008 little man started on melatonin, at first it seemed to be working. Ok he still may not sleep till 1-2 am but when your child is able to stay wide eyed for a whole 24 to 48hrs hours at a time you appreciate this huge improvement. I’ve always said 4-5 hours sleep a night is a hell of a lot for my little man. Problem was I had become so used to having to be a night owl that I now had trouble adjusting to this new routine, I would often become overfatigue which isn’t a great place to be! You see once I finally manage to revolve my sleep routine around that off little mans it suddenly changes again and were back to square one.

As a parent of a child with extremely bad sleeping habits there are times I fall to pieces. However I consider myself to be some what a pro by now… Though It’s not easy holding yourself together, trying to stop yourself crying for the most silliest of reasons… There are days I’m a walking emotional wreck and other days a ticking time bomb. I’ve fallen asleep standing up and I swear I once fell asleep walking! I remember when I had my youngest child in December 2009… I would only have to yawn and the stranger next to me would say, “aww is the little darling keeping you up all night” as they glance over into the babys pram. Sometimes I smiled and nodded, other times I’d reply, “No his fine, it’s my 10 year old that keeps me up through out the night!”
The look of pure horror slapped across their faces. Many would preachify & instantly assume it was down to disobedience! I would be offered the ignorant suggestions as if they somehow knew my child,”Take the TV/Games console out off his room” Or even,”Shut his bedroom door and refuse to let him out” Some would refer to him as some kind of rebel out to make his mothers life hell!
If having a child with Aspergers has taught me one thing… It’s not to generalise… As we are all guilty of having done so at some point of our lives!!

My child is a child who walks around beeping and repeating bus destinations… He don’t care if I take his TV away or romove the xbox from his room. I can’t take away his thoughts… I can’t shut those out. If I could remove his thoughts just for the duration of night in order for my little man to catch some zzzz I would! But sadly that isn’t an option.

Some people will never really understand what it’s like to have a child that suffers with insomnia… the way it impacts on the parents and the child… on ones ability to function throughout the day… Those of us that do it everyday learn to adapt and somehow survive and go on having had such little sleep, if anything we get good at it. I’m told some people are designed to need less sleep then others… I suppose that’s the way my little man is designed to be… And though I wasn’t born to be this way, I learnt to be, because I had too!

I’m not under any illusions that there is a magic potion… But I hope that god is on our side and one day this issue will at least ease!

But the one thing I wish for more… is better understanding… When your child is late for school there is no eyebrows raised when You state your child has been awake thoughout the night. That everyone involved in your childs life understands or at least trys to understand the seriousness and significant impact the issue has on the whole family… To speculate and blame is never going to help… No parent needs criticism but understanding

Well… I write this with half open eyes but given it’s not even 9 pm the night is still exceedingly young for me! So for now I wish you all good night and hope that you all get some beautiful shut eye 🙂
Below is an example of my mood as a result of a sleepless night.