Here Comes The Sun – Tips To Help The Sensitive Child Cope

As the days and nights become increasingly warmer your sensitive child on the autism spectrum may require a little help in coping with the sensory issues that summer may bring.

So here’s a few tips aimed at those parents of the sensitive child! After all everyone deserves to have a great summer don’t they!

1) Does your child show a dislike to most sun protection products? Little man doesn’t enjoy the application of sunscreen and will spend half the day refusing to comply with my request to apply it. The dislike of sunscreen by a child on the spectrum could be due to a number of factors all of which are a result of the child’s senses. Little man hates the feeling of the lotion on the skin (protests that all feel sticky). This is as well as the smell of the lotion and the fact he needs help with the application process. Here’s some suggestions…
A – Try a powder protection like the one from bare essentials its odourless too.
B – Let your child learn to apply the sun lotion themselves using a mirror then try to cover hard to reach areas that will be exposed to the sun with clothing (thin and cool material)
C – Experiment with different brands of sun protection. Many have different smells and textures and most brands offer sample size bottles or sachets.

2) Try to organise outdoor activities around the midday sun. Children with autism who are sensitive to the suns rays will thank you for it.

3) Use a good insect repellent! No one likes getting bitten by insects and its a 1000 times worse for the child who is tactile defensive. Clothing that comes into contact with the skin is already an issue for these children but if clothing rubs causing friction to an insect bite things become intensely over sensitive. Then there’s the issue of infection to bite. Little man doesn’t listen if I tell him not to scratch a bite, he really can’t control the need to do so, having no power to resist. Your best bet is to just be safe and avoid insect bites altogether. As before experiment in till you find the right product for your child. Another good tip is to use fly nets at the windows or an air conditioning unit at night.

4) Cover up with a hat! As you should for all children insist your child on the spectrum wears some form of sun hat. Your child will be more comfortable in the sun and this will reduce the risk of sunstroke and little mans most feared pain… The headache! If your sensitive child refuses to wear a hat then try alternatives such as a sun umbrella and whenever possible, staying indoors during the hottest point of the day (the midday sun).

5) Does your child with Autism have a fear of flying insects? It isn’t a trait as such, but not uncommon for children with autism to have such a fear. Sometimes its due to factors such as the noise these insects make… Noises such a buzzing from bees, flys and wasps. It can also be down to a fear of getting bitten or stung due to it happening perhaps one day in the past. Regardless of the reason, its usually an intense fear, one that children on the autism spectrum will struggle to deal with. Its all too easy to hide away from those things we are scared of! However this only makes things more difficult in the long run as one day them fearful critters will sneak up on us. My tip… That its better to deal with fear head on by facing it! This can be made much harder when the child who is scared of such insects has a type of autism. But it can be done! It normally just takes a little longer. Ideas…
A) Let children learn more about the things they are frighten about. Use the Internet with them to unravel exciting facts.
B) During warm months use Mosquito nets at windows.
C) Be persistent when helping your child face their fears. Keep on trying on a daily basis.
D) If extreme (to the point your child wont leave the house) then speak to child practitioner for information, advice and ideas.

6) Use a thin 100% cotton sheet instead of a duvet at night! If your child is already a poor sleeper the heat could potentially make this issue worse. Try offering your child lighter cooler bedding. In the summer months little man will often use a sheet instead of a duvet. As long as its 100% cotton we don’t have any tactile issues.

7) Whether appropriate clothing! I found that during the colder months I have to fight the little man to wear his coat, yet in the summer he refuses to go out without it. Experiment with different coats that are appropriate for the current climate. If your child insists on wearing a coat in summer then give them thin cotton summer jackets. Be sure to make sure the material is suited to your child’s tactile needs (little man will not wear waterproof material)!

8) Head to the beach! Being by the sea is always much cooler with the sea breeze. Little man always seems so much happier when we are spending time at the coast. We try to visit less crowded beaches to keep his stress levels down.

9) Avoid the shops! If like little man you’re child on the autism spectrum hates shopping at the best of times then avoid shopping trips during them hot summers afternoons. This is a recipe for meltdowns… You’ve been warned.

10) Cool down! I’ve found that by giving little man a battery operated hand fan he manages the summer heat much better. We did try using cool mist but spraying this on the little man’s face didn’t go down to well. See what works best for your child but if you do opt for a battery operated fan then be sure batteries are fully charged and maybe keep a spare set in your handbag just in case.

Well that’s about it for now. Hope these small tips help and if you have any of your own, then please share in the comments section. Thanks.x

Ensure Your Child With Asperger’s Syndrome Gets The Education They Are Entitled To!

Every child In England has a right to a education, one that is fulfilling in all areas, yet enjoyable too. Our children should start school with an array of wonderful learning opportunities ahead of them. They should be offered a variety of experiences both in and outside off their place of learning.

A good education should be one that not only provides a child with good levels of attainment but also helps build confidence, decreases vulnerability to poverty, inequality and social exclusion regardless of race, religion or that of disability and special educational needs. Sadly things are not always so black and white and regardless of laws and codes, schools and local authorities don’t always play by the book.

We as parents don’t often find ourselves worrying about whether our children will receive an education catered to their specific needs, especially before they have even started full time education. We often find ourselves assuming that professionals will teach and respect our children as one would expect them too. This is even more so if we are yet to discover our child has SEN or a diagnosis consisting of Aspergers Syndrome as this can often be picked up much later when things have already become kinda messy at school.

Maybe you are aware of your child’s specific difficulties and professionals won’t listen (sadly this is a common scenario). The situation is one made more difficult if you are still trying to obtain an official diagnosis for your child! I for one understand this, given my own son was diagnosed at the age of 8 years old, obtaining a statement of educational needs at the age of 10 following a somewhat tiresome battle with the local authority.

We all know that early intervention is the key to success. If your child is lucky enough to already have obtained their diagnosis before they have reached the age of compulsory school age, then you already have one hurdle met. This may seem strange to some…. Stating that obtaining any diagnosis of a social communication disorder is in anyway lucky! But it is lucky to have obtained this so early… Those who are still trying to get their child’s official diagnosis as they almost leave for secondary school, will likely agree!

Below I’ve listed some ‘Tips’ and “Need to know” advice, to help you ensure your child on the autism spectrum gets a full and rewarding education… one they not only deserve but more importantly… the one they are entitled to.

1: Remember just because your child has a diagnosis of Asperger’s syndrome this doesn’t Automatically mean they will be placed on the sen register.

2: You should know that it’s not just that of attainment levels or specific learning difficulties that leads a child to being placed on the sen register. It is also that of their emotional, social and behavioural needs. Some schools often fail to make parents aware of this when they are trying to obtain a better support for their child. Be sure to state your knowledge on the matter and don’t let them try to convince you otherwise.

3: Teachers often have the ability to “Forget” to inform parents of important developments, ones such as placing a child on the sen register. If you know your child is likely to be placed on the register or suspect so, then be sure to ask them in writing. If need be you have the right to request your child’s educational record. The Education Act clearly states parents must be informed that their child is on the register and the reasons why. All developments should be recorded and shared with parents in writing. Parents should also be even the option to contribute to their child’s IEP.

4: Always Talk to teachers ensuring they know your child’s diagnosis and more so… any traits or difficulties that may present themselves during the course of the school day.

5: You often find yourself not wanting to be seen as the overbearing, over protective mother. Nonetheless, its important to make a stand from the start. Working alongside your child’s teaching team is always the most beneficial way forward. However, letting them know you won’t be frobbed off is also OK too.

6: Its OK to ask your child’s teacher or teaching team what experience they have when educating children with additional needs, autism spectrum conditions and SEN. Here in the UK it is usually the SENCO (special educational needs coordinator) who you will want to meet with to discuss any worries or concerns as well as that of your child’s class teacher and if applicable, any teaching assistants.

7: Make an extra effort to record any incidents that occur at school. Whether it is the school that has informed you of these incidents or its something your child has told you, what may seem no big deal at the time may later be of importance, maybe even contributing to any evidence needed in order to get your child a statement of sen (soon to be health and education plan).

8: Make time to help your child at home with not only their homework but also social skills training. Use social stories to teach your child about different situations they may encounter while attending school and beyond.

9: Although it isn’t a pleasant thought you may want to bear in mind that children on the autism spectrum can often find themselves a target for bullying. Its horrible but sadly true that children can be very cruel. If your child’s traits are ones that are very apparent and stand out to other children as somewhat “Odd” I’d advise you to keep your ear close to the ground. Keep in regular contact with school and encourage your child to report any problems to a teacher they feel close to.

10: Remember, your child has the right to an education, one that is the same as that offered to his or her peers. Your child should not be made subject to discriminatory acts. Some examples are that of illegal and legal exclusions, internal exclusions or isolation, removal from certain lessons or not being allowed on school trips etc… without a very good reason. Those parents that are lucky enough to have their child’s diagnosis before they start school will have the opportunity to view schools asking questions on various subjects therefore ensuring their child’s needs can be met.

11: If your child’s school is not informing you of any incidents especially those that affect your child’s emotional wellbeing, and therefore cause problems when at home as well as school, then request a daily school/home contact book. This means you can record any incidents that take place at home, ones you believe could affect your child during their school day. With this, the “Said” school would therefore be required to do the same. This would not only provide peace of mind but would also provide a written record that could provide useful if applying for a statement or making any claim with the first tier tribunal.

12: Watch out for illegal exclusion. No head teacher or other member of the teaching team should call you and request you collect your child unless they are officially excluding them from school. Parents may be told that their child has had a stressful day, they are tired, had a meltdown or are just being disruptive. The phone call will likely end with the school suggesting it would be better if you could collect your child so they can go home to calm down. Although you yourself may want to just take your child home avoiding them anymore stress, you should remember that the school are meant to officially exclude pupils and this exclusion needs to be put down and recorded on paper. LEAs need to be noted, work provided and letters given to parents. Schools don’t like having to record exclusions as this doesn’t look great on them (and who wants the paperwork). As parents, I guess we instantly don’t want this kind of stuff recorded on our child’s school records, especially when we are disputing the reasons surrounding an exclusion… Or do we? The school illegally excluding your child shows that actually… They cannot met your child’s needs! When trying to obtain a statement (or soon to be health and education plan) we need to show why our child’s needs can’t be met. By just telling an LEA that your child is being sent home regularly for poor behaviour, without anything to back it up, isn’t really going to get you anywhere. You need to provide evidence and this can only be provided by way of official exclusion.

Note… Even if you agree to collect your child, the school is still breaking the law by not making this official.

12: Children with Aspergers and SEN can sometimes have relatively bad attendance. This was specially the case for my little man. This has lead to three court appearances due to the lake of understanding provided by both his old mainstream school and the local authorities ‘Education Welfare Officer’ (EWO). Little man has an incredibly poor sleep pattern and this combined with the discrimination and other difficulties experienced when at school lead to the development of school phobia. It took me a long time to get him into the routine of going, so to have the school send him home at least three times a week was more than frustrating… It was shocking! Thankfully the last judge had little difficulty coming to that same conclusion.

Given this was my third appearance in court for this matter, and the EWO had stated that herself and the LEA felt that a prison sentence, alongside a grade two fine, would be the most suitable form of punishment for me (said by EWO when the judge asked her what outcome the LEA was hoping for) I was more than relieved to have the whole sorry mess come to an end.

13: Always remember to keep in contact with your child’s school if they are not attending. Make a diary and keep notes on conversations and appointments you’ve had. Cover yourself with medical evidence and like me… Request that the education welfare officer collect your child and let them endure the horrible task of trying to get your screaming child dressed and out the door to school. Especially when they are having a huge meltdown, acting violent and smashing up the house… And that’s on a good morning!

It actually took me three whole years of requests for the EWO to finally agree. Lets just say that she was now beginning to realise the stress I was under (not that it changed anything).

If your child is not attending then You should always request that work be sent home from school. Your child maybe school refusing but you don’t want them missing out on valuable education. I found that the school didn’t offer and I had to constantly request this. If you are taken to court and accused of Intentionally failing to ensure your child’s attendance (sec 4441(a) ) you can also show that your child was in fact educated during the period of time they have spent absent from school.

14: Remember the law states that your child must receive a full education at the age of five years old! The law doesn’t state that this has to be in a school environment. Home schooling is always an option and one you may consider best to ensure your child receives an efficient education. Nonetheless, its worth noting that by opting for this you remove the social opportunities a school environment presents (even if your child does struggle with such social settings). Dependent on how your child’s social skills are I’d be sure to ensure that home schooling involves lots of social skills training. When we home schooled little man after finally removing him from his mainstream primary school, I made sure he engaged in other activities alongside other children. He started boxing twice a week as well as a number of other activities. The LEA reports stated how they thought little man would have too many difficulties integrating back into a school environment as he wasn’t only left without a school for a year following mainstream but during most of his time at his mainstream school he was either excluded or hidden away in isolation! Reading such reports can be heartbreaking but in the end they only made me more determined to prove them all wrong. His now been in his independent special school for around 18 months and is popular among both the teachers and his peers.

15: Use visual timetables for both home and school. Highlight any up and coming events or changes well in advance placing them on a visual calendar. Making schedules and routines consistent between the two settings (home & school) could make things more simple for your child, therefore removing any anxiety towards school.

16: If your child has Aspergers or Autism they probably have a special interest in something or another. Little mans obsessive interest really did overtake his life as well as ours as a family. He would speak about nothing else and could quite literally drive you into a state of insanity with the non stop discussions on bus and train models. Having Asperger’s syndrome doesn’t make you stupid and as he started to get that bit older he realised that other children were taking the Micky out of his love of the big red bus. With this he did very well to suppress his interests while in school but this did have its downfalls… Once home he’d just explode. It would all come flying out and he’d normally have a huge meltdown before finally engaging in the activities he’d wanted to engage in all day. This meant little sleep… Very little sleep.

Its not so bad when your child is in an environment where other children don’t see him as particularly “Odd” They all have their very own “Special” interests to occupy their minds to even notice his. But some children ain’t this lucky.

Regardless of where your child is educated its important to try and maintain interests so that they don’t go too OTT (the point when your child can think of nothing other than their interest). Although they have passion, the lack of concentration & appropriate social engagement with others can present huge problems later.

You might want to start monitoring your child’s engagement in their interest to assess how obsessive these may be. If it shows signs of going over board you will need to try and limit the time your child engages in it. You can’t shut down their mind but distraction and routine is key. A child with a really intense special interest will probably know a lot about the subject and present some pretty impressive skills when it comes to their knowledge of the interest. This can be a real strength and as you celebrate this it will therefore help to install your child’s confidence. Just be sure they explore other areas too otherwise school work will not be tolerated if its not centred around the specific interest as they will struggle to concentrate on anything else whatsoever.

Parents who punish children like a dog

I was up all night last night and this wasn’t due to the little man. I was engaging in a 24hr photobox mission on facebook (which I will write more about in another post a bit later on)! So,with no company but my own and those in cyber space who like me where pulling their homes apart in a bid for picture inspiration, I decided to pop the telly on.

Lucky I did, as BBC3 were showing a documentory (which I gathered was a repeat) called, ‘ Cherry Healeys Parenting Dilemma’ Fantastic. I remember being contacted by a PR when the show was in the piloting stages, at the time I had no interest in documenting my own parenting dilemma to the world, as Little man was really testing them parenting skills and my overall sanity, school was a huge issue and I was pretty worn out. Having seen the press release I was excited to see how it had all planed out. I was now gripped by a tv show and a photo challenge (good job I can muti-task)

Yet, I wasn’t fully prepared for what I was about to view.

The show was presented by Cherry Healey. I love this presenter, I first saw her present another bbc3 documentry on binge drinking which was brilliant. She has since covered an aray of topics even the journey through her own pregnancy, the debates surrounding breast or bottle feeding! Another recent one was a documentory on how womem see their own body image, which again proved to be fantastic viewing.

I quickly got my next photo challenge out the way (will again explain what the hell I’m referring to a bit later). I then settled down to watch the show. Cherry met a number of different families all with their own degree of problems or parenting style.

I just want to share my opinions on just one part of the documentary which covered a couple who had two young boys, I’m guessing the youngest to be 3 or 4 at a push.These parents believed that a very strict parenting routine was needed to keep the boys in order!

Firstly, let me state, “I’m not a judgemental person and I hope no one see me as one” I know as well as anyone, how it feels to be looked upon and have your parenting skills judged. I understand everyone has their own way/style in doing so, and I think that’s just fine! However, if you are willing to have your families day to day life broadcast on national television, then you expect people to watch and have an opinion. My opinion, These parents punish they’re children like a dog.

Cherry met the family at their home during meal time. Both parents were happy to contribute their views on “how children should be raised, and what works for them as a family” The family had previously been sent a video camera to film their day to day routine. During the interview mum states how both her children are made to sit and eat at the table (a fair request and rule, I think)! She told Cherry that the children have to eat all food including snacks at the table, there is no point ever when the boys are allowed to eat on the sofas! Friday is sweet or treat day and the boys are occasionally able to eat sweets while sat on the carpet. fair enough! Dad went on to say that the children are always picked up on their manners if they every slip. Please and thank you are at the up-most importance. He stated that the boys rearly need reminding when it comes to the little things like, taking their shoes off when coming in the house or not eating on the sofas, etc. Great, sounds perfectly normal and reasonable to me.

Then the subject of discipline was raised. I was both shocked and horrified By the parents approach to this issue, so much so,I cried throughout the rest of the programme. If the boys didn’t sleep or did something considered to be,”naughty” like getting out of bed more than once, etc… a disturbing action, (which at first I thought was a nasty threat) took place. The two young boys were told if any unwanted behaviour continued then they would be shut out the back door in the garden amongst the darkness. They quite willing filmed themselves following through with the threat.The Mother said at one stage, “stop it or your going outside in the dark” and that’s just what happen! The child was filmed screaming and you could see and hear the little boys heartbreaking pleas as he begged his mummy not to put him in the garden! Shit, I was horrified. It lasted just minutes but was enough to scare the little boy to death, he sobbed trying to hug his mummy as she tucked him back in his bed telling him to remain there.

God, he is a pre-schooler his brother not much older! These are children not dogs! The father states that he doesn’t like doing this but it’s never for long and does the trick they don’t get up again during the night!

“I’m not bloody surprised are you?” I had visions of the children needing to use the toilet but holding it in till daylight through fear of the back door and the cold darkness it brings.What if the child had a nightmare and woke up, would he be handled in the same way. What hurt me is strangely these parents didn’t see it as wrong, I actually think they love them boys a lot and really do believe it’s for their own benefit.

I’ve worked hard to help little man battle his fears and phobias and to see a child being punished by sticking them out in the dark makes me livid. No, seriously it made me so angry I didn’t know what to do with myself! Little man suffers from anxiety and to see those parents actually inflicting it, while I’m trying to help my child decrease such fears, hit me hard.

Another punishment inflicted on the boys was smacking. One of the parents stated that it’s only used as the last result in an attempt to stop the behaviour from escalating to far. I know parents smack, there’s a massive debate that will always surround smacking. Yet this little boy was smacked on his hand (the second time quite hard) for behaviour that I saw as nothing other than just child like behaviour. The youngest wanted some crisps, he was told no, he continued to ask and climb over his mother. He was then smacked on his hand lightly. He then went to where the crisp were (he was clearly just seeing how far he could go and was rather hoping he could gain access to the crisp) he was then smacked hard for a second time and then carried to his room. He sobbed and throw his arms about in an angry manner. His father was stood their obviously filming him causing him even more stress. Both parents said they were smacked as children and it didn’t do them any harm (umm, I beg to differ) Cherry was clearly shocked especially when they openly admitted smacking both boys up to three times a week (well I see two smacks given over the one small incident, so I’m guessing it’s more). I can get why some parents may snap and lose it for a second, I do understand that many parents do engage in smacking.

When a child has special needs parents with no help from the local authorities, deal with behaviours far more challenging than displayed by them little boys and smacking them would just make things worse.

The parents views were pretty far off, with mum stating she would rather use her form of punishments than have a child who can be seen as demanding and giving the parent the run around in public. Gosh, I wonder what they would make of my little man and me, what with the added addition of my daughter and demanding toddler she may have something to say! Sadly the parents seem to believe that any child engaging in behaviour seen to be challenging was a result of bad and non consistent parenting.

Although I agree, consistency is 100% best. I don’t agree it is always possible. I firmly stand by my opinion, that in my view such punishments (shut outside in the dark) shouldn’t even be threaten in the first place, let alone enforced. Yes, be consistent with routine and discipline but it’s worth remembering that if your child keeps getting out of bed (there just maybe a reason)!

There are times I’m a bit soft but on the whole I tend to stick to my guns. I just really hope that them little boys don’t grow into bullies as sticking your child outside in the dead of night dosent seem like a loving nor effective parenting technique to me. Does it you?

To find watch the show visit BBC iplayer or you can read the BBC blog (an interview with Cherry Healey)

Related articles

• Discipline from a child’s perspective (universalscribbler.wordpress.com)
• Is publicly humiliating your child a form of abuse? (theglobeandmail.com)
• What have Cherry Healey and Dawn Porter taught us? (guardian.co.uk)

Just a Little girl (part one)

A smiley little eight year old girl with golden blonde locks in pig-tails could be seen darting about in the summers evening sunshine with all her friends. Her eyes were so big and so blue, her massive smile lit her whole face causing her eyes to twinkle, her laughter, it was electrifying , her giggles infectious. She had many friends on the street in which she played and lived along with her Mother, Grandmother, Little brother and baby sister. She was truly loved by all, such a care free, happy child. 

 But once all the children had been called in for tea, bath and then bed, the Little girl could no longer hear the giggling happy voices of her wonderful friends, but that of her own thoughts, the ones she felt convinced would drive her insane.

 At bedtimes she would pretend to sleep but wait anxiously for her mother to go to bed just so she could finally do what needed to be done. Her mother would sometimes stay up far to late, but more than not the little girl battled her bodies urge to sleep, It had to be done, or she would be punished, Yes, she would be punished by God.

 Finally she would hear her mothers footsteps coming up the stairs, first she would go to the toilet, followed by the bathroom to wash her hands, face and brush her teeth, finally the bedroom door would click shut and the little girl would wait a few minutes allowing her mother time to fall into a peaceful sleep, then…..

 On her little tip toes, and ever so quietly the little girl would creep down the very creaky old wooden stairs, first stop, ” The living room”  

 Right… Ashtrays first, next plugs and sockets. With her little fingers crossed she would count,” 123, 123, 123, quickly uncross her fingers, then crossing them again she counted 123, 123, 123! Six sets of 123 but if added together they made the number eighteen! She didn’t do it once or even twice but six times, six times for each and every plug socket in the living room, kitchen and hall way. 

What in the hell was this little girl counting for, and in this strange way at such a ghastly hour?

Its like I’ve said, she was counting plug sockets! Is it that hard to understand?

 Some items in the little girls house needed to remain plugged in, the freezer for one! This bothered the Little girl she needed to sleep, how could she sleep knowing the freezer was left plugged in? What if their was a fire? It would be all her fault! Ignoring the urge and the thoughts that bombarded her head she sneaked back up to her bed. “Did I check that the gas rings on the cooker where turned off ?” she asked herself! She knew her Grandmother always made sure she turned the cooker off and she was almost certain she had checked it and counted it just as she had with all the plugs and plug sockets and that of the ashtrays. What if she was wrong and the cooker blow the house to pieces! It would be all her fault she would kill her family! It was far to much for an eight year old to deal with so for the second time that night she quietly made her way back down the stairs but didn’t just check the cooker, she rechecked everything in the same way she had before.

 Some nights the little girl did this some eight times or more. Sometimes she woke her mother or was unable to face the fight with that of her own mind so she would unplug the freezer, much to her mothers horror!

 When that little eight year old girl crawled back into bed so tired she could hardly keep her little eyelids open she would force herself to pray to god, asking that he kept a long list of family and friends safe! To end her prayer she crossed her little fingers and counted in the same way she always did. Yes, sometimes the little girl did this six times, other times she thankfully feel asleep on the first attempt (Thank goodness).

 This all started when the little girl was just seven years old, when she first see the TV advert,”Wake up get a smoke alarm!” She had the images of that brown Leather Chesterfield sofa turning into an inferno of black smoke and bight red flames when the cigaret fell from the ashtray! She had the images permanently imprinted in her mind. How could she ever forget what she had seen fore the little girl was sat on that very same sofa! 

 It was just an advert on the TV right! But that Sofa was the same design, even the same colour… Did that mean the same thing would happen!

 Life went on quite normally around her. Days, months and years passed in a haze and when that Little girl was ten years old her world changed for ever. 

 “Where’s mum and Rachel”  asked the little girl when she found herself at her mothers friends house alongside her little brother. Rachel her little sister was now two and a half. She hadn’t been well lately and that worried the Little girl. She was told her mother would be back soon, but she had a horrible feeling. Then sat on the stairs she heard her mummy’s friend crying, she was on the floor crying.

 Some days later the little girls mummy told her that her baby sister would need to stay at the hospital as she was quite sick. No one said how sick! Yet neighbours and friends knocked on her door and brought flowers, people visited and hugged mummy as she cried. I’m sorry was the words she always heard. Her daddy who just stayed over at weekends seemed to be staying more often, everything was suddenly different and confusing.

But the Little girl wasn’t stupid! This Little girl was wiser than most ten year olds, she knew this was bad. 

 Her mother wasn’t at home much anyone and her grandmother and sometimes father looked after her. It felt like a life-time when finally her mother told her she could visit her little sister.

 As she sat with her mother and brother she took in her mothers words, trying to make sense of it all! “Rachel’s very sick and because she’s very sick she has been given special medicine to make her better. The medicine is very strong and this makes some peoples hair fall out.” Her mother struggled to get her words out… The little girl asked, “Mum, has Rachel had the medicine, has Rachel got no hair?” The mother who was trying so hard to hold back her tears, shook her head, “No, she doesn’t Claire”  

 That’s right, the little girl was me! My baby sister had cancer (Leukaemia, known as cancer of the blood) and my mother was the bravest mother in the world.

 I remember looking at the little toddler playing in the hospital cot in a side room at the hospital, I remember the look of fear in my mothers eyes every-time the doctors came to speak with her, my father stood at the window weeping, the sounds of her screams with the needles and injections that she soon become accustomed to!

 I had OCD, through at the time it had no name, it was just normality to me!

I was ashamed and hid this somewhat oddness that was now a massive part of my life and would be for some year to come.

 When my sister became ill my own life was turned upside down forever! We were not a religious family yet I’d prayed for the safety off those I loved since I was seven years old. I had tried to protect them but I must have failed. Only now a woman with my own children, I know it was at this time I took my OCD to a whole new level.

 This story can’t be told in one post so I have decided to tell it in two maybe three parts. My reasons for sharing this is to give you an insight into the real me. We all know I’m a mother of three, one with a diagnosis of Aspergers Syndrome, but I want to show that although I’m not on the spectrum there are many demons that my son faces and I not so strangely can relate too. I’ve had my own difficulties held against me by Little man’s old school… Many tried to question my own past health issues for those behind my sons. But I’m not ashamed of the child I was and the mother I am today. I just want to show that with in this story. Please if you have enjoyed part one then look out for part two to find out what happens next.  

Getting to grips with the seven senses

Have you ever found that something caused you such annoyance that the stressfulness of the situation forces you to stay away, avoiding the source of stress at all cost?

What about if something caused you pain and discomfort would you avoid the source inorder to gain control, be free from the pain, living your life in the most prosperous way you could?

Imagine if the most common stimuli… sounds, smells etc… caused you the above on a daily basis! Everyday tasks being a protentral hazard causing you high levels of anxiety… But even worse you are unable to escape the trigger but instead expected to tolorate it!

imagine if you hated spiders, feared them more then anything else but u were forced to let one crawl all over your body… How would that make you feel?

Think of a situation, a fear or phobia that causes you high levels of distress, imagine having to deal with it every single day! Yet no one “gets it” your totally isolated and alone… Being seen as a drama queen, attention seeker or labelled as a trouble maker.

So many children & adults on the autism spectrum have difficulties with their sensory processing, some more then others, however when it’s a problem it’s likely to be a significant one! School, home, shopping centre where-ever the trigger lie, problems with sensory processing can be experienced just about anywhere. School is an obvious culprit for children given the amount of time they spend there. School can present huge problem, unstructured time is normally always a trigger for the child on the spectrum and you may find as a parent that your child is being labelled as challenging as a result of this.

There are seven senses that make up our sensory system… These are Vestibular (movement-balance), proprioceptive (body awareness), tactile (touch), auditory (hearing), visual (seeing), gustatory (taste) and olfactory (smell) Some may have problems with all the above, a few or non at all! It just depends on the individual.

The example of the spider was given to me by my very clever little man, who was trying to explain to me how he felt when forced to tuck his shirt into his school trousers (school uniform was a huge problem when in mainstream)

Little man has a range of sensory processing problems some worse then others. I would definitely say that he has the most difficulties with his tactile sense but auditory, visual and olfactory come pretty close. These have become more obvious with age.

It is said that people who are tactile devensive will likely have problems with fine motor skills that are related to academics and self-care skill which is very true for little man.

Lights tend to upset him too. While at the library with his tutor he was finding it hard to engage due to the lighting. This was because the lights were all different which meant they all let of a different degree of light, some brighter then others. When he first started he came home and asked, “Mum, why can’t the library stick to the one type of lighting instead of having all different types” he then went on to say… “Some flicker and buzz which is so… annoying!” He would also come home with a pounding headache. This was due to both the lighting and the fact he had actually engaged in work alday something he hadn’t done for the whole of 2010 while in mainstream. His now managing to cope reasonable well with the lighting and if anything his becoming quite good at blocking it out. As long as he isn’t sat in the brightest spot or beneath a buzzing bulb his OK.

His tutor is excellent and has worked out that by letting little man listen to music through his headphones (oh yes Bruno Mars is repeatedly played) while working he can engage better. Many don’t get this but his a bit like me there! I will blast music through my earphones while tackling important work as it means I am able to block out the world and completely get into my own zone resulting in getting important work finished ontime and to a high standard.

Every single day I learn something new about little man and how AS affects him. It was only the other day that I discovered the reason for little man wanting his trainers done up so tightly that it almost stops the blood flow! It’s actually a sensory related issue! It seems logical now and I can’t understand why I hadn’t realised it before. He says they need to be tight in order for him to remain in control of his feet. Shoes that move around freely give no control he told me. I completely get it now!

Little man can also be a little bit of a sensory seeker. He likes rough and tumble (play fighting) sadly due to the lack of understanding from school little man was all to often excluded for such behaviours. He also likes memory foam pillows, trackpants (he wants to wear the same ones everyday no matter how dirty they have become) and certain textures that he just has to touch.

The above are all fine but he does have a liking for fizzy drinks. This isn’t just a suger thing but definitely a sensory one too… How do I know? Well he cried the other day due to my refusal for him to have a can of fuzzy orangeade. I offered juice and he states “it’s not the same” He then goes on to inform me that it doesn’t feel the same in his mouth or going down his throat.

So there’s a bad habit need fixing.

So… My over all point to this post is for some awareness to come out of it, example… When a parent tells you that, “My child really can’t tuck his shirt in as this causes him physical discomfort that is one step away from what we describe as pain” We don’t really mean… “My child can’t be arsed to tuck his shirt into his trousers” or “My child can tuck in his shirt in but chooses not to as a deliberate attempt to piss you off” We really did actually mean It when we told you he can’t!!! For you to state, “Really I’m sure he can if he wanted to” is really offensive and like asking someone in a wheelchair to walk upstairs!

The child or Adult on the autistic spectrum has an array of difficulties aswell as qualities! Next time you sport a child throwing a “wobbler” in the supermarket, street, school gates or wherever else it may be. Stop and ask yourself is it sensory, is it autism or another difficulty, hidden disability you will never know so therefore should remain openminded before pointing, commenting or passing judgement.

After all how would you deal with fear, phobia, pain and discomfort if those around you had no understanding of it?

Sensory processing problems are very real, just as autism is! And for that reason it should not be looked upon as anything else!

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.