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.

Do you see what I see?

I see a boy sat alone, yet smiling and playing

You see a loner, the strange kid, the odd one!

I see a boy frustrated, confused and distressed

You see a brat with no respect, no decent upbringing!

I see a boy stood talking, trying to make a connection, a possible friend. He gets it wrong because of something he said wasn’t seen as appropriate. His been left rejected and upset.

You see a trouble maker, a boy who is rude and makes it his mission to offend.

I see a boy walk into a busy playground, I then see parents like you shaking your heads as you rush to gather your kids. I now see a boy stood playing in a large empty space alone!

You see “That Kid” from before, the one who swore as he throw himself on the floor, shouting at children like yours for accidentally running into him, pushing him as they chased a ball.

I see a boy stood drawing a tear as he watches the school coach leaving!.

You see the boy who ruins it for others. you see it as a blessing that he isn’t attending the school trip. Beyond this you see nothing.

I see a gathering of mothers stood at the school gate laughing. I see the reaction they give as I’m passing… Silence whispers and staring.

You see that mother, the one who drags up her kids… Failing to install good values, respect and self discipline

I see a sweet boy who has the tendency to become easily distressed

You see a boy who throws a wobbler whenever he fails to get the things that he wants.

I see a boy excitedly speaking to others about his interest. He speaks quickly announcing all he knows on the subject. A boy who hasn’t yet released its his time to quit speaking .

You see a boy who dominates conversation, his rude letting no one get a word in edge ways. You see a bore, a child who is self obsessed and selfish… Spoilt and for that you blame me… The parent.

I see a boy who counts to ten before speaking a child who has learnt that this may stop him from potentially offending.

You see an odd boy, one who can only be described as slow and profoundly stupid.

I see a boy who cares about “The Rules” who therefore reminds his peers that those rules are not to be broken.

You see a boy who is bossy. A child who is likely raised by a control freak!

I see a boy who is actually very bright, he has qualities that others could only hope for. I see a boy who continuously tries to get it right. A boy who gets up every time his knocked down, never giving up, nor giving in. Yes he can be naughty his a boy after all. But should you gather your kids and run when you see him… No! why… what ever for?

You see nothing I see.. How could you ever see what I see if you refuse to look a little closer.

You can’t see autism, it doesn’t get stamped on the head of a baby at birth. But knowing just how autism can present is an education you need. With numbers rising there is a good chance the child who sits next to yours at school or even that work colleague you have drinks with on Friday is on the autism spectrum.

My child like many is capable of just as much as you or I. He is an individual, with interests, talents, weaknesses and at time difficulties… We all are as human beings.

Certain areas of his brain work somewhat differently making some areas of life more challenging… Social communication, sensory processing and black and white thinking are to name but a few! Yet that doesn’t mean he should be judged or discriminated against.

Its not the traits of autism that make my sons life more challenging but the way others perceive them traits. His happy with himself 98% of the time and just wants you to except him but more importantly… Understand him!

After all… Where does being “Average” get you?

So I ask you… One this day aimed at raising awareness for those with autism and Asperger’s syndrome. Do you see what I see?

Or Will you at least try to see it Now?

A Children’s Picture Book That Children With Aspergers Can Relate To

I was lucky enough to be sent a review copy of a fabulous new children’s picture book from Flashlight press, all the way in the US.

And how gratefully received this was! Its a picture book like non I’ve read before! One that highlights one of the common autism traits I know all to well… The ability to be that little bit too honest!

I actually found myself laughing out loud as I read the book “Being Frank” as there was one particular part that reminded me of an incident at little man’s school! Actually it was almost the exact same scenario. In the book Frank is a little too honest (as the title suggests) and on one occasion he tells the teacher that her breath smells funny and is therefore sent to the principal as a result of his honesty. Ok, little man didn’t inform the teacher of her funny smelling breath, he instead told the head teacher that his breath smelt like his grandmas dogs.

Anyone who parents a child on the autism spectrum can easily spot the trait in Franks honest manner. Franks motto is that “Honesty is the best policy” He tells the truth, the whole truth, and nothing but the truth! Only he soon begins to realise that its not always appreciated, especially by adults. Frank is only being honest when he tells his mother she has lots of wrinkles as a result of her glaring at him, and even worse, when his mother is stopped by the police for speeding and frank informs the policeman that his mother was aware she was speeding as he had already told her so.

Frank learns with the help of his grandpa that yes it is important to be honest but its all about being tactful when you do.

Its all about a “Little more sugar and a bit less pepper!”

This is a real enjoyable and funny story with some lovely but all the same , hilarious illustrations. I think children with Aspergers in particular, will really be able to relate to frank. The book could well be used as a great social skills training tool and resource. Its one I’ll be recommending to families of children on the autism spectrum for sure.

Being Frank
Is written by Donna Earnhardt, and illustrated by Andrea Castellani

Being Frank was a runner up in the About.com readers choice awards

Sadly its not widely available here in the UK but its really worth getting one shipped over.

Check it out over at Flashlight Press

Communicating Though Technology

Like many people on the autism spectrum my little man has a fondness for his PC and more so the Internet. But its not just a hobby, Interest or even an addiction! Its his voice, the great one within… The one he can’t seem to use to express himself in the real world.

I’m not saying that Little man can’t speak, because he can! He is very verbal (ask our neighbours, the bus driver or even the postman)! Its just that little man struggles to put some of what he needs to say In the right set of words. This can lead to frustration, misunderstandings and a degree of sadness.

Of course I’d always heard about both children & adults with Aspergers having some type of connection and in many cases, great knowledge when it comes to the world of computers, many children branded as little whizz kids. I didn’t think much about this, that was in till my own child took to the keyboard.

I’ve never had to really ever teach little man something more then once when it comes to computers. I remember his interest at a young age. He was eager to know what all the fuss was about and couldn’t wait to explore cyber space. At 12 years old my son can now show me a thing or two when it comes to using a computer especially when it comes to windows (yes, its true, once you use a Mac you never go back).

Both the existence of computers and the net has opened a whole host of doors for children like Little Man. I’ve noticed that online his much more confident, fancying himself as something of a comedian at times. He loves talking to others about the world of Mind Craft, making Youtube Tutorial videos and sharing his love of wrestling and transport.

Its simple, the computer has no string of facial expressions to understand, it doesn’t constantly change its tone with every mood, it won’t ever demand you stare at it in order to prove your paying attention… Its your connection to the world and those in it. Its a place that lets you express yourself without fear in a way you know how! No ones looking at you and even if they are its through a web cam which according to the little man is an extremely cool invention (his words not mine).

As your child gets the most out of their new communication tool, they also learn and discover all there is to know about it! Little man has no issues when it comes to making spread sheets and presentations. His a massive fan of power point software and seems to understand where every file lies on his PC (even those he has no access to).

It allows him to write at speed instead of lagging behind as he struggles with his fine motor skills when doing things the traditional way. Whether his working on a new movie trailer for his youtube channel or sending that occasional funny tweet that makes everyone laugh, his expressing himself without fear… His learning, communicating and experimenting all at the same time.

All the above is fantastic, making me a very proud mother. However, though I think its great, as his mother I still feel its important he learns the communication skills required to use away from the computer, out there in the big wide world. That’s why together along with his school Little man is thought communication and social skills that we encourage him to use both on and offline.

So… Will I be at all surprised if my son grows up to get a job that involves computers, the net or both?

No… I think its looking pretty likely don’t you?

Tips For Parents Of Tactile Defensive Children (Part 1 – Hygiene Problems)

Many children On the autism spectrum have some degree of sensory integration difficulties. As a parent of a child diagnosed with Asperger’s syndrome with accompanying sensory integration problems, I know just how difficult some situations can become for both parent and child.

One of the senses in particular that little man has problems with Is that of his tactile sense, hypersensitivity to touch/tactile input. As his aged with appropriate Interventions Little man is slowly learning different types of coping strategies to deal with such difficulties.

As a child and still to some extent, I myself was very tactile defensive growing up. As a child with OCD I also developed compulsions and rituals that involved me having to touch certain textures that I didn’t like, a required number of times in order to stop bad things happening. This itself made my sensory defensiveness very hard for others to spot!

I guess the above means that to certain degree I have that much of a better understanding of little mans difficulties within the area of tactile hypersensitivity. Nonetheless, there was areas of difficulty for little man that I had never experienced and to some extent would have never related both the symptom and associated behaviour together. A good example of this would be little man’s reluctance to bath. It took a while for me to realise that it wasn’t the fact he was lazy with no desire to wash, but it was instead the way his body felt when getting out off the bath (wrinkly tight skin, the feeling of wetness within certain areas of the body etc…).

So, that’s why today I would like to share some of the tips and strategies I have learnt, that help my little man with some of the difficulties he experiences at the hands of tactile hypersensitivity. All these difficulties affect the area of personal hygiene.

Teeth Brushing: Little man hates brushing his teeth and will try and avoid at any cost. This is because the way his mouth feels during & following this action. He also gets rather upset that his taste buds have changed when he drinks anything shortly after brushing his teeth. Just explaining that such experiences are short lived and resolve themselves quickly, doesn’t make any difference to a child like little man. So what do you do?

Tip… Buy only soft tooth brushes. I buy brushes designed for toddlers milk teeth. Its not ideal him using them at 12 years old, nonetheless, I’d rather he brushed with this than nothing at all. As well as the soft brush he also uses toothpaste designed for smaller, younger teeth. This toothpastes doesn’t give off the same sensations. They are lower or except from certain ingredients altogether, therefore avoiding any burning or ultra cooling sensation in the mouth. This also leaves little taste behind and that first drink isn’t as daunting as it was before. I know he will need to use better toothpaste as he goes into his teenage years so have therefore started to look at the different options available in terms of products… Is there actually a toothpaste designed for those with tactile defensiveness? Big gap in the market there if there isn’t! Any suggestions, please do leave them in the comment section.

Bathing: Little man will need me to start requesting he baths in the morning in order to ensure he eventually gives in on the refusal front and is in the tub come late evening. Reasons for the refusal is mainly centred around tactile sensations shortly following a swim in the tub. He understands that the feeling of wetness within certain body areas is quickly fixed with a towel but it still concerns him leading to avoidance. One of the reasons this is, is that he also hates the sensation of tight clean skin, wrinkly fingers etc… That are very present (probably more so) once you have towel dried.

Tips: I must first add, that little man actually loves the shower, sadly we don’t have one and can not afford a shower fitment over our bath. So, why is it different and why might a shower be a better option for your tactile defensive child? Well… the water is aimed downwards in a continuous flowing motion, there is little opportunity for water to really sit on skin in large amounts. When showering the body has not been submerged in water. This therefore removes that sensation of tightness to the skin and wrinkly fingers and toes.

Little man again loves swimming and this itself confused me. Later, I actually discovered he liked the smell of Chlorine and thought that it cleansed his skin of dirt, meaning he could avoid a bath later on at home lol. The fact there is a shower at the swimming baths is another big Incentive to swim. He will protest on an evening his been swimming, that he don’t need the bath his been in the chlorine filled pool plus showered too! For me it was more reason to get him in that bath.

Good products… I never give little man soap to use. This itself makes the skin super tight and squeaky clean, sending him loopy. I myself, don’t use soap for the dislike of tightness plus sensitive skin. We instead use a good sensitive body wash with little fragrance. But saying this Little man also seeks out certain smells and some actually help encourage him to bath. The boy loves lush and colour changing bath bombs can have him running to the bathroom. These are normally quite highly fragranced so I am pleased they are all natural handmade products with many of them correcting some of the tactile sensations he develops.

Recently we discovered a product from Olay that is a body wash with added body lotion helping to lock in moisture therefore removing the dry, tight sensation. It seems weird as body lotion is something we apply following a bath but it does really work.

DIY… When we recently ran out of our Olay product sent from the gods, and I couldn’t find it anywhere in the shops, I decided to get all DIY! I added some Johnson’s Baby Lotion to a bottle of Simple body wash and can you believe it? It really did work! Excluding the odd oily blob of floating mixture in the bath, its actually a really clever and effective solution.

So… Overall use good products to help reduce sensations, apply good body creams and lotions following a bath too.

Use a good quality towel that isn’t hard or stiff. If you have a tumble dryer then use it to keep towels fluffy and warm.

Make bath times fun and sensory inviting with water colour changers, bath paint and our favourite… Crazy Soap.

If you have a shower, give your child the option. Its my experience that a shower is less likely to bring on such extreme feelings of tactile discomfort.

Hand-washing: Little man needs constant prompts to wash his hands. Sometimes seeing is believing so if he can’t see dirt he thinks there must be no germs so no need to wash them. Again he hates the sensation of wet hands or those that feel funny after using certain soaps or hand wash. Other times little man just plain forgets, especially after using the toilet.

Tips….

Prove It: I used an ultraviolet light to reveal the unseen germs on little mans hands…. After all education is important for any child. I also directed him to online youtube videos and resources that explain the differences about dirt and unseen germs (what you can’t see really can hurt you). However, for you a more gentle approach maybe necessary. Children on the autism spectrum can be easily frightened and become over obsessive about subjects, therefore worrying about contamination and then as a result, engage in too much hand-washing! You know your child best!

Visual clues: Just a sign on the toilet wall that states “Now Please Wash Your Hands” that is visible when your child goes to pull the chain, can be enough to jog their memory and have them running to the bath room sink. We had one of them cute posters in a cartoon format that read pretty much the same reminder.

The Right Handwash & Hand-cream: A good handwash instead of soap. Little man then applies a hand cream to replace moisture back into the skin correcting the sensation of tightness. Buy your child a pocket travel size hand cream to take out and about with them, including school.

Child Friendly Hand Sanitisers: Sometimes when out and about your child may refuse to use a public washroom sink for a string of reasons like the horrid liquid in the soap dispensers or a fear of the electronic hand fans (used to scare Little man rotten). On the market there are now really good alcohol free Hands sanitisers (we have reviewed a few here on the blog). These, followed by the application of travel sized hand cream could be the answer.

Nail clipping & Cleaning: By far one of Little man’s worst feared hygiene task. It’s highly embarrassing for your child to have dirty nails and it’s also highly embarrassing for you, the parent that your child has such dirty nails. Little man just finds the sensation of freshly cut nails totally unbearable. He also freaks out when cleaning instruments are used, saying it makes him feel fuzzy. Now, I can share some tips I’ve been given but sadly we are still struggling. Nonetheless, you may have more success. If you have any tips of your own, that you feel myself and the Little man could benefit from then please leave a comment below.

Tips: Crystal nail files can help! I have a Leighton Denny glass file and its gentle and kinder to nails. Still its a struggle for use as he still refuses, freaks out and dislikes the cleaning process that you need to undertake first.

Allow your child to clip and clean nails themselves. Your child then has better control over how short to cut them and the sensations felt with differing lengths. Again we still struggle (Only ever provide such an option to older children.)

Incentives aka good old bribery. Not really a tip as such and quite bad advise but something I admit resorting to. Funny enough he still often doesn’t give in, even if I’m offering something exciting.

Try nail brushes for cleaning. We have a very nice soft nail brush with extra fine bristles that Little man is leaning to tolerate.

Remember, don’t cut too short. If the feeling of freshly cut nails is really overpowering, you will get nowhere near them with the clippers next time. Plus if you catch the skin you may as well forget ever trying again… Not gonna happen!

Try nail scissors instead of clippers. These don’t cut so bluntly decreasing the sensation that’s felt following the task.

Warning: Don’t ever, ever, even try and cut your child’s nails while they are sleeping! One minute he was snoring, I was clipping away thinking “Gotcha Now” When the next thing I knew the clippers were on the floor and I was following them with a freshly punched nose. Not his fault, he acted on impulse having been woken due to a sensation he finds horrific! Yes, just because they are in the land of nod doesn’t mean the brain doesn’t produce messages of uncomfortable tactile sensations!

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.

Aspergers and how it really affects us as a family

Some people comment “It must be so difficult for you as a parent” My answer is always the same… “We’ll, I don’t really know any different”

You see, your born with Aspergers Syndrome and given little man is my first child it means I’ve been parenting a child on the autism spectrum for some 12 years now. It’s not like he suddenly got it and as a result everything had to change! You adjust from child free young women to mum and you adjust in the way that works for you and your child regardless of any condition or disability.

Ok, that doesn’t mean we don’t have difficult days… God only knows we do! But we have good days too.

The thing is, little man isn’t sick, his not got a disease but a condition. His a child that is very able he just struggles within certain areas of life but is able to learn skills to make these areas more comfortable.

There are some very difficult challenges that come from parenting my little man, the lack of sleep is most probably one of the hardest. But then so is watching him become extremely anxious and upset and being powerless to fix it.

I’ve mentioned before that for us the “label” isn’t an issue. It’s my opinion that many families need to acquire a formal diagnosis to open doors to services (that even then you have to battle to obtain them). Autism is a spectrum and although some families don’t feel the need to seek an official diagnosis, many others do.

A younger Little man with a younger Alice just before diagnosis

However, there are some downfalls of that diagnosis and that’s the way others suddenly treat your child. We found ourselves fighting a discrimination case that we brought against Little man’s old primary school as he was forever excluded, bullied, isolated and more. The good thing the label did do, was give us the grounds to bring a case and ultimately win it.

The truth is the official diagnosis helped us get little man the education and treatment programmes he needed! It didn’t change Little man, he was still the same little boy he was the day before diagnosis… Yes he had Aspergers he just didn’t have Aspergers on paper!

Little man with baby brother Harley now 2

In all honestly, life is much harder when your child has Aspergers but mainly because the system… It’s the system that needs fixing not the child.

Early intervention is extremely important as we all know. Nonetheless 18m to 2-year waiting lists to even see a child paediatrician is just diabolical! It’s in this space of time your child starts experiencing certain difficulties but has no access to the appropriate services! By the time he has the diagnosis the difficulties are now boarding on extreme yet your waiting another 18 months for an assessment for recommended treatment of appropriate programmes.

Little man’s siblings do often find things difficult especially Alice-Sara who has often experienced violence at the hands of her brother and his unpredictable behaviour. Yet, she has always been a sister to a brother with Aspergers and although this doesn’t make things different its still all she knows.

Another sibling war

We get on with things… We are presented with problems such as that above we tackle them and we keep on tacking them in till improvements are made. Sometimes these are made quicker than others.

I’d be lying If I said little man’s Aspergers didn’t affect us as a family… Of course it does! But life isn’t unbearable, it isn’t a total display of darkness. Days spent full of meltdowns and distress. Sometimes Aspergers doesn’t come into it! Not everything he does is down to an Aspergers trait, sometimes his just having an almost teenage moment and although behaviour can seem challenging its just that of being a child growing up and having a moment of hot headedness.

Aspergers is apart of little man but it doesn’t define every aspect of his personality and even when it does it doesn’t have to be in that of a bad way.

Aspergers makes little man more goal orientated and rule bound which can be an extremely beneficial trait for a young boy. He is passionate and honest (most of the time) and very intelligent in many areas.

Parenting little man has also made me change as a person. It’s introduced me to a whole new way of thinking. It’s given me drive and passion, opening my eyes to what it is I’m good at and what I want to do with my life.

It’s brought me here to this very blog, its got me writing, sharing something that’s important!

We’re happy and although somedays we may seem as though we are not! We are… We are happy!

The Big Fat Autism Myths

Still today we are surrounded by countless myths concerning Autism and Aspergers Syndrome. Yes, we’ve come far to raise awareness for autism and the fact its a spectrum condition but still many struggle to except that some things are myth as opposed to fact.

Here’s some great examples…

Those on the autism spectrum have late language development!

Now although to some extent this is true, its not always the case especially in those at the higher end of the spectrum (Aspergers). Little man actually said his first word at 5 months and was able to speak very well by the age of 12 months.

Children on the autism spectrum make low academic progress because of learning difficulties.

Again this maybe the case for some children, mainly those at the lower end of the spectrum. However, some children on the spectrum have no learning difficulties whatsoever with some actually having higher IQ levels than those of their peers.

All children on the autism spectrum cannot attend mainstream schooling.

Admittedly mainstream school admitted that they could no longer meet little man’s needs and he eventually gained a place at an autism special school. This was despite him being on the higher end of the autism spectrum with an Aspergers diagnosis and a high IQ. Like many children with Aspergers he struggled with the more social side of school and suffered terrible anxiety. The truth is children with autism can receive a mainstream education… It just depends on the child and school in questions.

People on the autism spectrum don’t have feelings.

This is a big fat myth! If anything Little man feels to much and its these feelings of love and worry that cause him to become anxious. For little man its just harder for him to express those feelings… I know they are there and that’s a huge difference.

People on the autism spectrum don’t have an imagination.

Again this is a big fat fib. Little man finds it difficult to play imaginary games as he likes to base things on fact. He also likes to have a visual reference. However little man uses his imagination in other ways and is extremely clever at creating ideas when relating to something of interest.

All people with autism hate loud noise.

This is all down to the senses and regardless of autism we all have our own level of tolerance. Yes, many people with autism have heighten senses and this can make loud noise very uncomfortable (often to the point it becomes physically painful). However as well as children with autism experiencing sensory sensitivity, some are actually sensory seekers and will therefore seek out some type of loud noise.

All children who like Thomas the tank engine are autistic!

What can I say… Total Bull S#%# Yes little man liked Thomas the tank engine and statistics indicate that many children on the autism spectrum have a liking for Thomas at some point, however lots of children love Thomas and not all are autistic… That’s just crap.

All people with Autism are the same. If one person with autism experiences a certain difficulty then so will another.

Rubbish! This is why we call it a spectrum. Plus no two people are the same, we all have our own traits with and without autism. Yes there are a certain collection of traits that make up an autism diagnosis but this is a limited number.

All people with autism are Savants.

As lovely a myth as this is, it is just that… A myth! We all have things we are good at but only some of us have what it takes to be considered as Gifted which is the same for those on the autism spectrum. Many people with autism have things they are extremely good at (like little mans ability to memorise travel information) but rainman he isn’t and this is often the case for many.

Autism can be cured!

Most know how I feel about this myth. Autism is a life long diagnosis… There isn’t a cure. However, with the right education and learnt social skills things can be made less difficult for those on the spectrum.

Autism is caused by the MMR

Many will argue with me that this is not a myth. However I do believe it to be just that. You are born with autism, you do not develop it at some stage of your life. You don’t suddenly become autistic. And you don’t become autistic because of a childhood immunisation!

People with Autism are good a math.

Admittedly, little man is excellent at Math, but I do know other children on the autism spectrum who struggle with math and therefore find it their most difficult subject at school.

Children with autism can’t grow up to lead independent adult lives.

Many people on the autism spectrum, especially those on the higher end of the spectrum go on to have fully independent adult lives. This includes having a job, home and family of their own!

Learning through Play

It’s the 6 week holidays, time for the children to have some fun. But just because it’s the holidays this doesn’t mean we should reframe from education, after all education can be fun.

I don’t know about you guys but I like to keep the children’s mind stimulated. This can be difficult for Little mans, his interests are quite obsessive, a trait of his Aspergers Syndrome, I worry he will isolate himself, fallout of routine and have difficulties reintegrating back into school. Alice-Sara is also currently being assessed for dyslexia. She has been placed on the SEN register at school and I sadly wasn’t informed. Thankfully though things are improving with the school, it’s now my aim to involve Alice in lots of fun educational play throughout the summer. Lastly there’s Harley, his 2 with a mind like a sponge and as his mother I hope to help him to learn all there is to know during these early pre-school years.

As a blogger I receive a number of request from brands & PRs and one from RM Education ( a leading provider of technology for learning) has really helped me to undertake the above mission.

RM Education have a mission of their own, “To make learning fun” and as a result they have launched the fabulous online resource “RM At Home’ with the help of presenter Philippa Forrester.

I’m so pleased that I have been introduced to the ‘RM At Home’ website, it’s overflowing with great articles and resources for both parents and teachers.They also cover lots of different topics on different areas of Special Educational Needs (SEN) and have some lovely inspirational ideas for creating a sensory room.

As well as the above resources presenter and mum of three boys, Philippa Forrester, is helping RM At Home raise awareness among parents of the products that are available through ‘RM At Home’ that make learning enjoyable and effective outside school hours. It’s a few of these products that the children have been having fun discovering.

RM At Home have some excellent fun yet educational toys that both parents and child can experience together.

The Cannon Stomp: There is no other word but funky that describes this toy. Aim it then Fire it to see how far your ball can travel. Cannon Stomp is great fun and can easily be played together with others. When your child jumps or stomps on the silicone cannon a foam ball is dispensed with great speed, the harder you stomp the further & faster it travels.You can make it extra fun by making and setting targets for the ball to hit! You may wonder why or how a child can learn anything by playing with The new Cannon Stomp! But they really do as such an activity will better the child’s skills and development in ‘Reaction and agility training’ which is great for a child like Little man who is on an Occupational Therapy programme integrated into his school timetable as a result of his difficulties within this very area.

This actually has come at a very convenient time. Have you noticed my blogging over the last few weeks has been a bit non existent when my life remains as chaotic? No, it’s not down to the kids being of school but the fact I’ve been unwell with flu and a horrid chest infection. Cannon stomp gave Little man something to enjoy while developing some important skills. Honestly, I’ve been laid up on the sofa and his been keeping himself busy with it in the garden for decent periods of time at a go.

My tiny tot ‘Harley’ is only 2 but already his loving the Cannon stomp. Admittedly he spent sometime trying to figure out just how to get the ball out from the Cannon. However, when he did finally discover how from his big brother ‘Little man’, his Been non stop bouncing up and down on it trying his hardest to launch the balls… They fly out, he does this seriously adorable giggling and cheers with excitement.

Little man loves his new sensory friendly toy which is easy to use. All you do is load the ball by pushing one of the two foam balls down the cannon and stamp to shoot. Simple, educational, yet extremely fun too.

I feel the the Cannon Stomp is a really good toy which is particularly great for those on the autism spectrum, children with Gross Motor Skills & coordination difficulties as well as those child who sensory seek.

Another product sent to us for testing was the children’s New Recordable Magnifier which allows a child to record and share a 30 second audio message about what it is they see, therefore introducing essential learning skills in a fun way.

Where Alice Sara is Dyslexic she struggles with writing and spelling. However, My daughter is very vocal and is able to express herself in the most creative of ways (singing, story telling, vlogging, acting, singing etc) This would therefore be an assets for schools who have pupils registered with SEN and also those without SEN.

This recordable feature is a great way to get your child talking about their observations before they forget them without the pressures of writing. Or you can leave your own messages on the magnifier for a fun treasure hunt or tips on finding creepy crawlies etc.

The Magnifier can be brought as one (ideal for the parent) or in a pack of six (perfect for schools/playgroup etc). The Magnifier is a fantastic size, its bright and chunky yet extremely Lightweight which is perfect for small hands, it can also be attached to a lanyard.

Alice-Sara and my youngest Harley had great fun with this one! Little man however was sticking with his Cannon Stomp (the close ups of those creepy friends in our garden were freaking him out a little)! Alice-Sara spent a good proportion of her day on Sunday becoming amazed at the close ups she obtain of a number of creepy crawlies. I did shoot some awesome pictures but these are unfortunately still on my memory card due to my lack of living I’ve been doing while sick! However, don’t worry! I’ve included one of the RM At Home videos that shows you how the Magnifier works and why it can benefit your child. As for my pictures I’ll be adding these to an up and coming post on ways to education children with SEN at home.

Check out this video on YouTube:

All of RM At Home products have proven educational value – they are used and trusted by schools throughout the country so the quality is extremely high – it has to be to survive in a classroom!”

Commenting for RM Education, Senior Educationalist Kat Howard says: “You can buy fun stuff that’s not educational and you can buy things that are educational but not fun. We are fulfilling a need for learning resources that have proven educational worth while also being enjoyable for children to play with.”

“One product we’re particularly excited about is Easimaths. It’s an online maths tuition software for children aged five to 11 and it’s adaptive, which means as soon as the child masters something, they are immediately moved on to the next level. It’s bright, colourful and games-based and costs just £34.99 a year.”

RM At Home also offers another solution for parents – RM School Finder. There is currently no one place parents can go for information about their local schools – they have to trawl through several sources of data. RM School Finder, which is free to use, takes all available school data and presents it in a user-friendly format so it’s easy to see not just Ofsted reports, but exam results, extra curricular activities, what pupils achieve, plus softer information on the culture of the school direct from the establishment itself.

Why note check out this excellent video to discover a little more about this excellent resource or check them out at any of the links at the very end of this post.

Myself and the Children highly recommend RM Education (RM At Home) to all families of both pre-school and school age children. Its a brillent resource for the teacher/parent of a child with SEN but equally as fab for those who don’t. Visit RM At Home or like them on facebook follow on Twitter