Melatonin for the child with autism

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 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

• Research Review: Melatonin and Sleep (appliedbehavioralstrategies.wordpress.com)
• The John Crane Memory Game, So Much More Than Just A Toy (aspergersinfo.wordpress.com)
• A step in the right direction for autism thanks to Anna Kennedy (aspergersinfo.wordpress.com)

A fresh start

It’s 3-Am the early hours of Thursday morning, Little man is running around the house like some headless loud chicken on pro-plus and redbull. 

“Come on, you really have to settle down now! You know you start your new school tomorrow, don’t you think you should get some rest”? This was me, trying to unsuccessfully reason with my ten-year old little man! He seems more lively than ever despite the 8 mg of Melatonin he had an hour before! 

It’s the night before the big event! This is quite possibly the biggest event in little man’s life to date, for the morning will bring with it a new beginning, a chance to start a fresh! Don’t all children deserve this? 

Over the course of a few months I watched my child lose every last stripe of his self-esteem. I watched him being gradually excluded from everything he had learnt to love, socially isolated from the friends it had taken far to long for him to make! I battled a system that took every last inch of my strength to break, the endless meetings, the tears from both myself and my child. I listened to the professionals each one slowly giving up on him, the constant calls to collect him as he was said to have been a danger to himself and others, maybe he didn’t fit in with the daily activities planed for the day. I went to court where I found myself prosecuted for my child’s school refusal, not once but twice. I watched him cry, hit his head and ask god why? When my child stated, “I just want to be normal” I cried and continued to cry for nights, days, weeks even months after. I was scared for my sons future, for what lay ahead. I felt lost, wanting to remove my child from the school I felt was truly damaging him, the school that taught him in isolation like some mass murder. I battled for a statement, I got one, then battled for the appropriate amendments to be made! I got brave filing a claim for discrimination and getting the result we wanted although knowing this already tough relationship would now get tougher. Finally I removed my child from the educational setting that was so, so wrong for him, and watched the slow improvements as he was taught 1-1 for five hours a day at the local library by a great tutor supplied by the LEA. I found a school, an independent special school, solely for children with autism! Yet the Lea were not about to hand it to me on a plate and only after every single state maintained special school failed to offer him a place did they finally give in, agreeing to his placement at my preferred school. Little Man had spent the last six months out off school, prior to this, for the period of a year or more Little man was either home on exclusion, educated at school for the period of just three hours per day given in an isolated environment, spending the afternoons at home where he was home schooled. Now he would take the steps needed to make a slow transition to his new learning environment with the help of his tutor, his now best friend! 

This was a big deal for him, I understood that! It’s a big deal for me too! His excitement was electrifying, yet his anxiety was closely hovering by! Little man is wide-eyed at 3-Am almost every night, So this night wasn’t any different! However his this degree of hyperactivity was at a high and risky level, one I hadn’t seen in a while.  

It was something past 4-Am before little man finally gave in, surrendering to his bodies cry for sleep. I tried hard to stay awake, the fear I would somehow sleep through the alarm having fallen asleep so late was within me! Though I gave it all I had but was defeated, just as Little man was an hour before. 

What seemed like five minutes later (God I hate that) I was rudely but thankfully awoken by the horrid buzz of the alarm clock. Rubbing my eyes and seriously struggling to see a thing I faintly made out the numbers on the alarm establishing that it was 7-Am. I could have so easily closed my eyes, reasoning with myself that five minutes extra would do no harm, that I somehow would be able to remain in touch with my head that would remind me that I needed to get outta bed. But I didn’t… Though I have in the past, I made myself get out of that bed and get on with it. 

Waking the little man was like waking an angry dinosaur that or an over hormonal teenager (at ten, this isn’t great… meaning I would preferably go with the dinosaur right now) He angrily gave me an unwelcome gesture of his middle finger then so kindly asked me to @%** Off! I persisted in-till I had movement. Up he got with an awful load of abuse in toll . This little guy had only been a sleep a total of three hours and of course he was filled with both the fear and excitement about the new school . I tried not to escalate the situation and let him dress at his own slow pace. Eventually I was greeted with a somewhat more pleasant child, who sat next to me and said, “Mum, I’m terrified”  Holding on to his hand, I told him it was gonna be Ok! But if the truth be told… I was terrified too!

I would not be joining him for his first morning, It was decided that he should instead start the transition process with the help and support of his tutor. He would only go till 12 p.m. slowly working his way up to full-time. His tutor would go with him for the first two days to settle him before his contract to teach Little man would reach an end. (This was going to be hard) The taxi came and the escort came to the door. Little man walked out to greet her, I shouted that I loved him, to relax, enjoy it, to have some fun. His reply, “I love you too mum” His eyes were so tired and filled with fear, yet I knew he was also excited. I was incredibly proud at that moment… I could have exploded with pride, for after all his been through he was now taking this giant step into the unknown. The morning dragged I sat by the phone on tender hooks, ten, then eleven o’clock no call. I just wasn’t used to this! 12.30 I heard the knock, I ran down the stairs like sonic the hedgehog and flange open the door. There he was, my little man and his tutor. 

Indoors, feed and settled, (this has to be done before probing begins) I asked… “Well, what was it like?” To which he replied. “It was the best mum. I even made a friend! Oh guess what? He has aspergers just like me”  It was then I realised that the tears & the battles had finally amounted to something. I’m not stating they were all worth it, just that for once they lead to something positive. This time I cried the tears of happiness! 

 It’s early days yet, but for once I’m opting out of my usual pessimist attitude and holding on to the hope that this is really it…

A fresh start!