Addictions & Aspergers

Little man didn’t go to school last week hardly at all! He has a toothache which is probably down to the fizzy drinks he drinks. The thing is Aspergers Syndrome and toothache doesn’t always result in a trip to the dentist. Yep, his refusing, despite the pain his in. His made it pretty clear he isn’t stepping foot in the dentist and I’m losing the will to live as a result!

Firstly, it isn’t like I can just drag his backside there kicking and screaming! Why not? Because little mans kicking and screaming involves hitting, swearing and screaming so loud that in the past passers by have called the police thinking I’m some kind of child abductor. Believe me, this situation isn’t easy!

Shockingly, in between the tears of pain little man made a request… “Can I have a can off Coke please mum?”… Shocking… I know! I’m really having difficulty getting him to associate the cause of the pain with that of the fizzy pop. He waited till i was out of sight and went straight for the fridge. Lets just say that he finally realised that the fizz and the pain go hand in hand!

Yes, the fizzy drink as predicted, set of his toothache and did so in style. Little man rocked and cried as he experienced such intense discomfort. I tried to once again explain that this was a direct result of drinking fizzy drinks due to there high sugar content. I guess I expected some kind of big reaction, maybe a promise that he’ll never go near the stuff again! Shockingly little man made the suggestion of using a straw in the future instead.

The thing is, when younger, little man loved the dentist. He had a filling when he was around 6 years old! Myself and the dentist were sure he’d freak out and were all geared up ready for the explosion! Well, you can just imagine how shocked we both were when discovering he actually enjoyed the sensations of the drill during a small filling (mainly the vibrations he felt within his numb mouth).

He tells me he doesn’t remember this, which seems odd as he remembers almost everything (past events). He has no reasons to block such memories out.

I myself have a real dentist phobia and as a result, I’m registered under a clinic especially for those diagnosed with such fears. Note, that despite the amount of drugs they pumped in me, ones designed to relax me in order to receive the treatment I so badly needed, I still went ballistic and as a result, not one wisdom tooth was remove and not one filling applied… I left with worse toothache than when I had arrived! It is said that I had to be carried out from the treatment room as I was throwing punches at both the dentist and his assistant. I don’t remember becoming violent… I’m not that kind of person! This was down to the cocktail of drugs pumped into me for sure. I’ve now been told that the only way forward for me is to be put to sleep during treatment and I don’t want this to have to be the case for my 12 year old son. Its important that I point out that despite this somewhat intense fear, I’ve never displayed it in the presence of any of my children. If mums scared shitless then its simply a job for daddy! Oh Yes… I just ensure its him who makes the dentist trips. Though this brings me to my second reason on why dragging him kicking and screaming wont work! Dad isn’t used to public meltdowns, the type displayed by our little man. When outside, whenever such meltdowns have surfaced he’ll just run off the other way having been highly embarrassed by the situation! Sometimes I wish I had such an option as running! Sadly I don’t!

You see… In life some of the most “normal” everyday tasks that are usually completed with ease, are often more trying for those on the spectrum. I personally think, that those who don’t get to witness such struggles first hand, will never truly “get” it! I mean, I’ve been given some awful advice at times! Popular ones being… “Don’t take no for an answer… You’re the adult not him!” or another… “His being over the top and throwing a tantrum in the hope you’ll give up and give in!!” … Come on People, do you not think I haven’t already thought such “possibilities” over in my head? I’ve stood my ground and not taken no for an answer (and often still will) however, its all down to the situation at hand and how difficult little man is coping with the task or activity… Something’s are easier said than done and although their are times when his just plain not behaving, there are also situations such as the one we are in, where little man has little control over it! Trust me I’m his mother… I know!

Well, we have since had half term (which is a few days from ending) and little man still has an on/off toothache but still refuses to let a dentist work their magic. I’ve done my upmost best to keep any fizzy pop locked up and haven’t given him spends for the shop as I just know what he’ll buy. Sadly, I read an article in the paper just this week, about that of a young man age 30 who was diagnosed as having Aspergers Syndrome, was addicted to Coke (not the drug but the type supplied in a can and found usually in a refrigerator). Sadly this addiction took his life, it actually killed him. It was reported that the young man drunk an excessive amount of coke on a daily basis which has been reported to be behaviour motivated by his Aspergers. The young man had been drinking Coke -Cola since the age of 10 and his mother commented that it was as if her son had a self distract button (read report Here).

Its sad to think that the thing he loved was to be his killer! The 30 year old was reported to have died in his sleep and the cause of death recorded as excess liquid consumption.

Of course the above story scares the crap out of me! I just wish it would do the same for little man! So far no luck! Its dead frustrating and some days I just feel like I need to take ahold of him and shake the sense into him. Somehow maybe then the importance of what I’ve just told him would actually take some positive effect. Right now he just can’t relate his own actions with that of the young man who unfortunately lost his life at the hands of a Coke can.

Its my experience as a mother to a child diagnosed as having Aspergers Syndrome, that children on the autism spectrum seem to have rather addictive personalities! Of course not everyone! But for little man, I think this may well be the case! He so easily attaches himself to something in which he loves and like many diagnosed with Asperger’s syndrome, he will then over indulge. Both interests and habits almost always become obsessional and then indulged to an excessive level.

Well, its teacher training day this coming Monday so little man’s return will be on the Tuesday. He really needs to go in as the continued time off will just land me in trouble with the school/LEA. I could even be taken to court due to the lack of medical evidence I’ve obtained. Such evidence would usually be needed to authorise such absences. But I can’t possibly produce it, as little man won’t step foot in the dentist meaning I can’t request such written evidence. This is a fact but regardless of this, I know the court would not understand such a situation, therefore brand me an irresponsible parent before throwing me in jail, giving me a huge fine that I just can’t afford to pay, or even worse… Both!

Well, that’s about it for now! Just a quick thank you to all my lovely readers and fellow bloggers for your support and well wishes. Admitting to the world that depression has taken ahold off you, isn’t at all easy… But the response you all gave and tweets you sent just proves its worth speaking out and that no one is going to think any less of because your depressed. As you can see I’m slowly getting back to grips with blogging once more, though its taking long than expected I’m still here! Its a tad strange as I’ve always thrown myself into my writing when depression hits me! However, this time things were very different indeed.

Onwards and upwards from here on now!

Hope your all bright and well.

Bye, bye for now.

The Do’s And Don’ts When Parenting A Child With Aspergers Syndrome

Its not easy being a parent to a child on the autism spectrum! Actually… It isn’t that easy being a parent full stop!

Below are some dos and don’t, all based around the stuff I’ve learnt while parenting my little man. Remember, I’m just another parent like you! No, I’m not doctor or child psychologist and what works for us may totally not work for you. But why not have a read anyway… If anything you won’t feel do alone. Please, feel free to add anything within the comments sections:)

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So… Here it goes…

Don’t feel guilty if you failed to spot the signs at an early age.

Do remember that this is common for children diagnosed with Asperger’s syndrome with many of them not gaining an actual official diagnosis, till their teenage years.

Don’t be to proud to ask for help!

Do fight for it, if those who are meant to provide it, withhold it!

Don’t force your child to be someone they are not!

Do show them you are proud of them for being the person they are.

Don’t assume its easy!

Do remember that parenting any child can at times be challenging.

Don’t feel you have to explain your child’s behaviour, every single time they do something that makes others stop and stare.

But do educate those who are willing to listen! The important issue here is, not to get stressed when out and about. this only makes things more difficult for both yourself and your child. Remember its ignorance and sadly many are guilty of displaying it!

Don’t restrict the activities you do as a family.

Do prepare your child for such occasions with the help of visual resources and schedules to avoid unwanted challenges on the day.

Don’t forget you have a life too.

Do take time out for you, whenever the opportunity arises.

Don’t assume that any two children diagnosed with Aspergers will experience the exact same traits.

But do make yourself aware of such traits, preparing yourself for what may lay ahead.

Don’t assume a diagnosis is your child’s ticket to the support and services they may need.

Do be prepared to battle for them, services! Yes, you’ll be expected to provide evidence showing why it is the help is needed.

Don’t just expect others to instantly understand your child’s diagnosis

Do be prepared for ignorance & denial. Sadly many find that its friends & family who display the worst reactions to the news of a child’s diagnosis. As for strangers…. I not don’t even notice the states as my son displays a screaming match at the local train station. Ok its never easy, but you adjust and get used to it.

Don’t freak out if your child develops an interest in something considered to be strange or unusual.

Do embrace and encourage all that your child loves regardless of its wackiness.

Don’t assume your child will have learning difficulties.

Do celebrate the subjects they excel in, and offer help and support to improve in those they are not.

Don’t base decisions on what you want for your child!

Do base decisions on what is best for them.

Don’t beat yourself up if you lose it! Meltdowns that go on for hours are likely to make you crumble.

Do remember that your human and your child still loves you ( regardless of what they may say).

Don’t be surprised if your child announces to the lady sat on the bus, that she’s old, wrinkled and looks close to death.

Do play games and work on activities designed to help your child avoid social mishaps like that of the above.

Don’t waste money buying your child the top branded toys, especially if they have failed to express any interest.

Do make them happy on Christmas morning if padlocks, staples and rulers were on their Christmas list.

Don’t be too disheartened if your child shows no interest in making friends.

Do have hope that one day that will change!

Don’t force your child to play with other children…

… But do teach them the social skills required to do so! Most children on the autism spectrum will eventually show a desire to interact and play with others.

Don’t waste your time looking for cures

But do look into therapies that have been designed to help your child better develop the skills required to succeed in both child and adulthood.

Don’t assume that just because your child doesn’t display certain traits during childhood they won’t during adulthood.

But Do remember maybes are not certainties.

Don’t try to make your child fit into society!

But do mould them as you would any child so society fits with them.

Don’t use complex language (metaphors and sarcasm) when talking with your child

But do try and teach them that others will to avoid miscommunications.

Don’t force your child to wear certain clothing, eat certain foods or attend certain activities.

Do be sure to research sensory processing disorders as their refusal to do any of the above could be and likely is related.

Don’t assume that your child with Aspergers will have the abilities to cope in a mainstream school (not all can)!

Do make sure you are open minded… Sometimes special schools are all your child needs to succeed within education.

Don’t use your child’s diagnosis as an excuse for unwanted behaviour.

Do remember that all children can be challenging and all are not autistic… You will learn the difference, I have!

Don’t forget to be mum to everyone

Do remember that siblings of children with Asperger’s syndrome may display unwanted behaviour or mimic their siblings traits as a way to gain the attention they crave.

Don’t assume your child will be bullied.

But do look out for the signs as statistics have shown that it is children like yours and mine who become targets.

Don’t force your child to believe in the mystical world of make believe.

Do remember that many child with Asperger’s syndrome like things based upon facts, the type backed up by evidence. If you can’t prove how santa gets round the world in one single night then chances are he will never believe. Just make sure he doesn’t share his findings with his siblings… Like little man has tried.

Don’t ask your child if you look good in a new dress unless you want blatant sharp honesty…

Do be prepared to be shown your love handles and chubby knees if you do.

Don’t believe everything the books tell you.

Do remember that every child has the capability to at least try and lie… Well, at least the desire to try and do so, is usually there! Its just that children with Aspergers are not all that hot at it! Little man usually cracks within minutes.

Don’t be so serious…

Do crack a smile, your child with Aspergers is more than capable of making you proud… Mine does.

Don’t just assume your child will tell you if something is wrong! Aspergers is a communication disorder after all!

Do be ready to put on your investigation cap, as you try to discover just what has upset your child… Remember they will expect you to just know.

Don’t feel that everything has to become a mission in life because of your child’s condition.

Do be prepared to be pleasantly surprised when your child shows you that something you thought would be impossible for them… is actually totally possibly.

Don’t waste time asking yourself “What If?”

Do remember that we have one life, Our own unique and special story. All children deserve to be brought up happy with stacks of love and great memories to support it. Our children will eventually grow up and fly the nest… Yes even those with Aspergers Syndrome! My point? Just enjoy your kids, never taking a single day for granted… Even those not so good ones!

My Child’s Diagnosis Didn’t Give Me Depression! The SEN System Did That!

Its funny, Just recently I found myself engaged in conversation With a fellow parent at my daughter’s school. We were discussing depression, a subject I won’t hide from!

This parent reads my blog and is aware that depression has sometimes been a part of my life… More so than not.

So, if I’m ever asked a question I will try to answer it openly and Honestly. I’m not ashamed to say… “Yes I had depression” Why should I be? So, Having engaged in conversation for at least five-minutes with this lady I suddenly came to realise that there was some type of crossed wires on her part in regards to a depressive episode I experienced around 3 years ago! This started me thinking… Does everybody think the same way?

So I wanted to explain something, and do so very clearly! My son’s diagnosis of Aspergers Syndrome didn’t bring out any episode of depression within me. My child being on the autism spectrum has never actually left me feeling depressed! However, what has had me running for the antidepressants is that of the things that come with that diagnosis (like it being stuffed in a brown envelope and shoved in your hands). I’m not talking in relation to little man’s autistic traits, his sleepless nights or sudden angry outbursts! I’m talking about the battles to get others to sit up and listen. Basically, It wasn’t my child’s Asperger’s syndrome that depressed me it was the system in which I now found myself battling with.

You think a diagnosis is going to change thinks. The right help and support will come and be handed to you on a plate… Well dream on, it most certainly won’t! I learnt almost instantly, that for some, my sons diagnosis wasn’t worth the paper it was written on.

Over the years I’ve come to realise that being a parent to a child on the autism spectrum makes you a stronger person. It gives you fighting power, the type you never even knew you had! Because when your a mother its not only your job to ensure your child has everything they need to lead a full and happy life but the love you have for them that drives you. Almost any mother can relate to this regardless if their child is autistic.

Battling schools for appropriate educational services, educating society about autism and getting your child’s voice heard is all part of the package but it doesn’t necessarily mean its going to come with instructions, and I guess it was this aspect of his diagnosis that hit me the hardest.

Being told little man had Aspergers Syndrome was hard, I can’t deny it! No matter how prepared you think you are, you never are… Not really! Even when you’re told by specialists that its almost a certainty and you’ve therefore done all your own research and have reached the conclusion that “Yes, they are right… you can see it too!” I guess its because it makes it all the more definite, more final! But what must be remembered is that little man was the same child he had been the day before receiving a final diagnosis and I wasn’t depressed then!

Its all to easy to assume that the giving of a diagnosis is the reason why a mother crumbles and starts suffering such conditions as depression. What one must remember is that its all that comes after… The fight to make others do the right thing by your child, its this that can really drain your energy both physically and emotionally.

So if your about to receive that final slip of paper enclosed within a brown envelope, then brace yourselves… As the battle begins.

How Would You Feel If Your Child Was Given Blades To Self Harm At School?

Yesterday I read a very disturbing article regarding a UK Special School and there policies surrounding the safeguarding of the pupils in their care.

The article states that the school who cater for children with high functioning autism and Asperger’s syndrome, had introduced a procedure which would allow a child to self harm in their care. Now, I don’t mean turning a blind eye to whats happening around them! I literally mean that teachers were instructed to hand the pupil a sterilised disposable razor blade and sterile wipes and then escort him to the toilets while they waited outside the door for the child to finish, checking on him every few minutes before finally cleaning up the wounds.

The school had introduced a new policy that would allow the child with a history of self harm to self harm in a “Safe” controlled environment. But luckily some teachers didn’t feel comfortable with the policy introduced by the more “Senior” staff which resulted in some having raised concerns with the designated officer at their local authority. The policy was therefore brought to a stop some 6 days after it had first been introduced. A full investigation is said to be underway with those involved possibly facing a professional conduct panel if the incident is thought to be deemed serious enough.

Yes, I’m a parent to a child with Aspergers Syndrome who attends a special school, but regardless of this fact, as a mother alone, I’d not be very happy knowing that my child was attending a school that practiced such procedures. I find it frighteningly worrying that this is what the school believed to be a responsible thing to do! Something said to be in the child’s best interest!

I also think that the staff who worked at the school took the right action. How was it fair to expect them to participate in such action? What if something went wrong and the teacher assisting the child was then brought up on charges.

I don’t like to judge, god only knows I get judged enough, but I do wonder while the parents didn’t protest to the policy. Maybe they did truly feel that this was in their child’s best interest. Maybe the fear of their child engaging in such activity alone was a fear much greater. It is said that the parents of thr child were thought to be aware of the new procedure, but having had many dealings with schools, “Aware” is not always as it may first seem.

Again this just goes to prove how the system is not supporting these children and their families as it should be. Was the child seeing anybody about the self harm and how was this being dealt with, what was their advice? Surly it was the first source of advice the school would seek. Therefore did medical professionals outside of the school feel the procedure to be appropriate? I just hope this child was even getting access to such support.

I ask, what do you think about as you read this? I’ve so far seen nothing but negative comments. Parents, like myself expressing their concern that this has been allowed to happen. I am yet to hear from someone who thinks the school got it right! Do you?

You can read the article in the Daily Mail where you will have access to the name and whereabouts of the school in question.

Again, please do share your thoughts here on the blog.

Read more: http://www.dailymail.co.uk/news/article-2298952/Unsted-Park-School-Investigation-launched-teachers-hand-special-needs-student-razor-blades-self-harm-safely.html#ixzz2OkWPEOFE
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Little Man Puts All His Social Skills Training Into Practice When He Meets His Favourite Chelsea Players

I can not begin to put into words what an amazing day, today has been.

If you’ve read my recent posts, you will already know how I won the opportunity to take little man to watch his team ‘Chelsea FC’ training today at Cobham, in preparation for their home game against West Ham this coming Sunday (17th March). What’s more, we are also invited to the match. As winners we have been handed VIP Platinum tickets to the game. This package offers the works, its the ultimate in VIP experience and with tickets costing between £700 – £800 each on the Chelsea official website, we are overwhelmed to have been given this amazing opportunity! One I never could have afforded otherwise.

Well, back to today… We woke up nice and early and set of to Cobham and Stoke with all our fingers crossed that little man would get to meet his football heroes. The PRs who contacted me over my win were made aware of little man’s aspergers Syndrome and they were great on the day. Little man did so well, given he was full of excitement and had very little sleep the previous night, he still managed to deal with it all really well.

Lucky for us it was decided that training would take place inside rather than outside. I say lucky because it was absolutely freezing with high speed winds playing complete havoc with my already wild untamed hair. This also meant we were even closer to the action with the players training just a few feet away from us.

Little man wasn’t at all star struck at this point. While there was some distance between himself and his footy heroes, I think it still felt a little dreamy.

Then it was the moment of truth! No one knew for sure if we would get to meet the players but we were told to bring Chelsea memorabilia for possible signing plus a camera as there may possibly be photo opportunities. You, see it was all a case of maybe and of course such uncertainty for a child on the autism spectrum is torture. We discovered we had won on the Friday and this was his first question. I did just consider saying it wasn’t an option as to lower his heightening suspense but even though it would have been my idea of being kind, he would have been most upset as the surprise may just have been to much. He wouldn’t have enjoyed it as much as he should have due to the whole unexpectedness of it… He needs to be prepared for something as big as this, so I decided that if we didn’t get given the opportunity to meet the players then I’d much rather deal with his disappointment then that of his confusion and shock if we did.

Well, the photos say it all! He was a very lucky boy and I’ll never forget the look on his face as he saw Ashley Cole making his way over to say hello! Yes, I’ve honestly never seen such a look on his face… I guess this is what they call star struck! I was so proud of how he held his excitement together as he greeted the players. He was even starting conversations… Rehearsed I think, though brilliant all the same.

Posing with Ashley Cole

Little man with John Terry

Picture with Luiz

Little man made sure he greeted each player and had them all sign his Chelsea football shirt which he was wearing.

I even got a quick snap with the lovely Frank Lampard…

Not my most flattering but how could I not share

It was wonderful seeing my Little Man so happy. He left the training ground on a real high and still can’t stop talking about this day.

Bring on Sundays Match, that’s all I can say!

Thanks so much to the guys at Lucozade and Chelsea FC for making Little man’s day a truly remarkable one! I really don’t think them boys in blue release how much joy they brought to a little guys face who over the years hasn’t found much to smile about.

THANK YOU FROM BOTH OF US.

Tips for preparing preschoolers with Aspergers for full time education

School isn’t an easy place for the child on the autism spectrum. Here’s some tips to prepare preschoolers on the autism spectrum for what lies ahead as well as some tips designed to help you, the parent, find the right school for your child.

1- If possible introduce your child to a play school or a nursery setting so that they are given the opportunity to get used to being around other children. If you don’t, then you run the risk of problems when it becomes compulsory that your child is educated.

2- Introduce social stories that are centred around that of your child’s first day at school. Continue using social stories that cover school in general… especially trips, sports days and other activities that don’t happen on a daily basis.

3- When deciding on what school to send your child, take your time looking into the different options. If your child has a statement you also have the option of looking into special schools.

4- If possible take your child with you to look at schools. They may only be a pre-schooler but its important to see how the school sits with them. Be sure to choose a school that has experience of educating children on the spectrum and one that offers all the support your child will require.

5- Check ofsted reports as well as online reviews its important to do lots of research when it comes to schools.

6- Ask teachers if you could possibly take some pictures of the school and classroom setting (obviously not the children)! It would also be great if the class teacher and head teacher wouldn’t mind you taking a picture of them (the teaching staff). With these pictures you can build your child a social story that is centred around the school they will attend.

5- Pictures like those above could also be added to a child’s visual timetable. You could even create them a travel book. Inside this book you can display pictures of the teacher, toilets, playground etc… This would allow the child to use visual clues throughout the day in a number of ways. It would be an especially great tool for the non verbal child.

6- Engage your child in role play. Have fun playing a game of schools, therefore preparing your child for the real deal.

7- Prepare your child for the world of education by starting out early. Giving a child a head start in education is a wonderful gift regardless of whether they have autism or special educational needs. Counting games and colour matching, arts and crafts and reading are all great ways to learn and will help your child practice concentration techniques needed for the classroom.

8- If your child has poor sensory processing then start introducing them into the world of sensory play. By playing a number of sensory games, over time such exercises could help your child adjust & adapt to different types of sensory stimuli.

Above image from my autism and sen pinterest board (pinned from the awesome site Carrots Are Orange

9- If your child is yet to be diagnosed then do all you can to get professionals to see your child as early on as possible. Lots of children are diagnosed as being on the autism spectrum much later on once attending school. Children with Aspergers can often find themselves struggling in primary or even secondary school, while parents are battling the system for that of a medical diagnosis or a statement of SEN… quite often its usually both. Though, it should be noted that some traits of autism, especially Aspergers Syndrome may not surface till much later on, once a child is in school. Its not always a struggle to obtain the diagnosis. Good schools and SENCOs may be the first to spot a problem and therefore refer you to a specialist for an official diagnosis.

10- Children with Aspergers prefer a good set routine. School is a very structured setting and the child on the spectrum will really like this aspect of their school day. However, there are times when routines have to be slightly altered and changes need to take affect. We have found that unannounced supply teachers upset little man more than anything (even when he does have warning he still finds it hard to adjust)! Be sure that your child’s teaching team fully understand the importance of routine and the need to inform you of changes asap. Of course there will be times when changes are unavoidable and occur last minute but the earlier you know the better prepared your child will be for the change… However big or small it may be.

School is a substantial part of a child’s life. It is a place they will attend 5 days per week, for an average 6 and a half hours per day. Its imperative that they are comfortable in their learning environment. As parents it is our job to see that they are!

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.

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.

Little Man Has Turned Scottish

Have you ever heard about those with Aspergers being able to change their voice (the way in-which they talk)?

I have, you see, I’ve been living with a child who has suddenly gone from English to Scottish basically over night.

His obsession with WWE and TNA wrestling is the cause. His favourite wrestler is Drew Mclntyre and he happens to be from Scotland.

The Little man started out by just copying his entrance walk into the ring, he then started to paint his face the Scottish flag and now his mastered the accent.

Now, I have nothing against the Scottish people of the world, I have many Scottish friends. However, the little man is not Scottish and although the accent is mastered down to a T, he is actually driving me loony speaking this way.

Yes, of course in the beginning it was a little bit funny (after all he sounds just like him)! But you really can only tolerate so much of it. His even using the voice when it comes to him requesting things etc. I don’t think his doing it at school… Well, I can only hope he isn’t that is!

Over the years Little man has spoken in a number of tones and voices, ones that he hears and then copies. For many years he would switch from his everyday tone of voice to that of a monotone one, as if he was a talking computer. His also had a strong interest in transport and would recreate the train and bus announcements… He always got it spot on. Now with his ever evolving interest in wrestling I was convinced it was just going to be the mimicking of the entrance and the actual matches… But this, this is just bonkers!

However, this type of behaviour isn’t one that is completely unknown with those on the autism spectrum. I decided to look into this more and had a look on google to see what I could find. I actually came across a conversation trend on “Wrong Planet” that was started by a 16 year old British girl with High Functioning Autism. She states that she is a naturally quiet person but when she does speak she speaks with a strong Irish or Scottish accent despite her naturally having a British accent. She states she chooses to speak this way and people now know her to do so.

There is also a section in a book wrote by Tony Attwood on this very subject. I took this quote from the Tony Attwood website … “My mother tells me I was very good at capturing the essence and persona of people. At times I literally copied someone’s looks and their actions. I was uncanny in my ability to copy accents, vocal inflections, facial expressions, hand movements, gaits and tiny gestures. It was as if I became the person I was emulating (p.22).

Aspergers & Sport

Yes, it’s true… Many children with Aspergers Syndrome do experience a certain degree of difficulty when joining in with team sports. Nonetheless this doesn’t mean trying is out the question.

Our children may not be able to overcome autism but they can overcome many of the challenges they face just like you or I they have the capability to go forward and pursue their ambitions and dreams.

Ok, the Little Man isn’t dreaming of becoming a footballer but he has always wanted to be a part of a team and as a 12 year old boy why shouldn’t he be?

I remember the first time little man joined a local team. We had to explain his difficulties to the trainer as he was gobsmacked when little man just walked off the pitch mid game. He shouted… “Oi, where do you think you are going” Little man just turned around and replied “I’m going to the vending machine for a drink” (he had a bit of a fascination with the vending machines back then)! It took some explaining to get him to realise that you can’t just walk of in the middle of a training session or worse still… a game.

He lasted 2 more weeks before deciding it wasn’t for him. He thought the trainer was mean but he was just doing his job. Plus, every time he was tackled for the ball, he would haul abuse at them for cheating or purposely trying to kick him! It was in all honesty a total nightmare.

His that bit older now and fancied another shoot. My stomach flipped with nervous… I didn’t fancy watching him get booted off a team just as he joins it. But then our neighbour the mother of little mans best friend started up her own team. She is fully aware of little mans difficulties when it comes to sport but regardless she gave him that chance to play football.

As I watched him at his first big match a few weeks back I watched with pride. Ok, he did walk off once and almost had a fight with another player on the other team… And yes, yes his a sore loser! But he did it… He played the whole match and left mum feeling proud.