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!

#silentsunday

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.

A Mothers Reflection

This is me, ‘Claire Louise’ daughter, sister, friend, blogger, mother of three… A Human Being!

Yes, this isn’t my most flattering picture, in fact I look a mess, but that’s not the point I’m trying to make here!

A year back I wouldn’t have dared post this image of me looking so worse for wear. But this weekend all that changed!

Little man had a meltdown, his first in a good few weeks.This meant it was a big one… Though huge is a better word to describes it! What with the looming return to school, little sleep and a whole host of other issues, he exploded and did so in a deadly fashion.

It was little sister who was his target and he hit the balls eye with her every time. I by this point had become a woman close to breakdown and as I saw him mid air, ready to inflict a karate style fly kick aimed at his unsuspecting sister, I finally lost it.

Flying of the opposite sofa I wrapped my arms around his waist and as I pulled him back we fell to the ground. He flipped, went ballistic, angry doesn’t seem a strong enough word. Little man does this certain facial expression which consists of him sticking the tip of his tongue out as he bites down on it. When I see this I know his now capable of going to far! His totally unpredictable and this scares me.

I was right… He went mental, trashing and hitting out at all in his way! Alice-Sara and the littlest tot had by now escaped into the garden and as I watched the mother of all melt downs unfold, it was now my turn to lose my cool! By this point I was screaming, swearing and bombarding him with orders mainly consisting of “Get out of here right now!” He throw some pretty nasty insults my way too and I’d just about heard “I don’t want you as a mum” one to many times!

“I hate you #%*+##” he screamed while throwing himself at me.

“Well I don’t much like you, maybe you should go find some place else to live” I roared!

As soon as the words had left my mouth I wanted to take them all back. I’d lost control and responded through anger, something I know doesn’t work with little man. Well, at least the shock had stopped him in his tracks but only because he had turned and gone running up the stairs. As his door slammed shut with an almighty thud, I felt my legs buckle from beneath me and I dropped to the ground in a messy, unhinged fashion.

Yes, I cried… I cried for reasons of anger, tiredness, frustration, hurt and regret! My words had now left me feeling like the worse parent in the world! Although yes, this was a bad meltdown, I have actually dealt with a thousand others worse! Ones that literally had me pulling chunks of hair from my head in pure frustration…. Why had I lost my cool now, today… This time?

The little man was now deadly silent, I could hear his siblings giggling as they jumped up and down on the trampoline. I knew little man did wrong and regardless of his Aspergers he needed to learn how to regulate his emotions and therefore control his temper. But I still needed to apologise for what I had said simply because this would be the only thing now on his mind, he would be questioning my reaction without having any consideration to what caused it! His part in it all will mean little because despite the fact my words had hurt him emotionally, he would still never relate the two, and it was my job to remind him of this!

I left him for a while… There would be no point me speaking to him when his in any type of highly emotional, angry state, nothing registers. I sat back on the sofa, picked up my iPhone and sent a tweet announcing my failed moment in parenting. I wasn’t looking for sympathy, I just wanted to tell people what I’d done. I guess I wanted some one to tell me to pull my parenting socks up, but they didn’t…

I got lots of tweets everyone reminding me that despite being a mum to a boy with Aspergers, I was also a human-being with feelings too. Yes, yes… I did know this, yet when your in that situation I’m in, you forget to remind yourself of such a thing! You’re to busy punishing yourself.

I thought about this for awhile before going upstairs to speak to the little man in-order to apologise for my hurtful words while somehow highlighting to him that what he did was wrong too! I also wanted to give him an important reminder on “how his words hurt me in a similar way to how mine hurt him”.

I knocked on the door, he didn’t answer but I could hear him sobbing so with that I open the door and sit on the bed beside him. I told him I’m sorry and explain in the best way I can that my words were those said through anger. I then tried my best to get him to see how his actions leave me and other family members feeling hurt too. I gave him a hug and come back downstairs.

After that I found him a sleep on the bedroom floor… The meltdown did have some benefits, it drains all the excess energy he has. We both hadn’t slept for a few nights and I can only wish that joining him was an option. However with two more little monsters in the garden, it wasn’t!

A few hours had passed, I had made dinner and was now escaping in a bid for this beautifully inviting bubble bath that was all ready and waiting for me. Only it was once I was in the bathroom that I suddenly caught sight of my own reflection. And it was the image above that I saw staring back at me. Yes, it was now clear that I’d walked about the house for the past few hours sporting a style that pretty much resembled that of Kung foo panda!!!

I then did something strange… I got my iPhone and captured that messy reflection of mine before finally sharing it with the world.

Why?

Because although I knew this was one of those days… The type you wish hadn’t come about, I also knew tomorrow would be better!

But there was something else I knew too…

I knew there would be someone else, another child like Little man on the autism spectrum, experiencing a meltdown to one of a similar degree. Another normally “together” mother, who like me suddenly loses it and then kicks her own backside for hours on end all because of such blunder. I knew that somewhere, someplace a mother like me would be stood looking in a mirror with a reflection that tells that of the same story.

It was for these reasons I posted my unhinged mental looking picture. In the hope that one day you would find it, relate to it and smile at it!

Tomorrow is another day, a better brighter day. That much I can promise you.

#HAWMC DAY 21 – A Poem

Public Meltdown

They look and they stare as if they just don’t care

Laugh and snigger it’s too much to bear 

He screams and he shouts as he punches the air 

I feel like running when I see it coming

Where’s the support, why are they laughing… never seen a grown boy barking 

Disconnected from others, fall of anger and fear he runs it’s no fun to chase him about as his mum

Senses heighten, emotions they do flow 

Tears and panic it’s so hard as his grown

 Meltdowns so hard for all those involved

ignorance much harder

if only they did know!

The 21st prompt in the “Health Activist Writer Months Challenge” (#HAWMC) set by wego blog was to write a Health Madib Poem. You visit the site feed it a loads of words and it generates a poem but I found it useless, nothing made sense and to alter it there seemed Little point as it would be easier just to write my own, so that’s what I did. 🙂

Post 21/30 in the wego health #HAWMC 

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Look here comes the naughty kid

Image via Wikipedia

You look at me, your eyes pressed firmly upon me, you do not look away, instead you stare that deadly stare, the one I hate but have to bare!

Are you sniggering? Seriously… Why? Isn’t it time you moved on by?

Shaking your head, Oh, that would be right! Don’t you think I’ve had enough of that tonight?

OK, you’re laughing now… is my child’s discomfort, confusion or happiness, funny somehow?

Leaving? You have an appointment to gossip down by the school, I guess you’ve never seen a child quite as rude as mine before!

Of course I understand, his party invite didn’t arrive, lost in the post you say, yer, that would be right!

He wonders why the children have gone inside, Little man now has his pick of the rides, but sadly the see-saw, he’ll not be able to try.

It’s OK, please there’s no need to explain, I understand, your child is not able to play at our house today, his bedrooms a mess, so his chores he must abide… another time maybe, how about when his 45?

Seriously ladies, he doesn’t bite, his actually house trained, though have a meltdown he might!

Shit… that’s a camera… you’re taking pictures… you twat! A zoo animal he is not! take my advice, go run and hide, because right now, I might shove that camera right up your behind!

God, yes I’m stress! Please don’t suggest…. what I might… Did you have sleep last night?

It’s an excuse, his naughty for sure, look at his mother, I say no more!

Off to the doctors… is Johnny all right? Catch it! I ensure you, that’s not right!

We live in a society where ignorance is breathed like air, one or too may sweetly smile, while others just stand & stare, never in their lives have they seen such behaviour before!

Now, You may have experienced the deadly stare from the eye of a passer-by, as your toddler demonstrates his new skill of throwing himself on the floor! Yes, I’ve seen it, daily in fact, I’ve heard the gasps of horror as my child sets about attacking the neatly stacked tins while on a supermarket binge. I’ve witnessed the shaking heads, the tuts, the suggestions from those who misunderstood the situation! I’ve explained, I’ve cried, I’ve stuck my finger up and smiled, I’ve dealt with it swell, I’ve dealt with it not well!

My child is a boy, an 11-year-old boy… who wants to be liked, his actually quite nice!

I’ve witnessed how a busy park suddenly empties on a hot summers day, the parent that grabs her child and runs away! I’ve lost friends, they faded, disappeared simply ignoring me, hoping I’ll go away

Ignorance is crawl, inflicted by those, young and old, those that don’t know you or worse, those that love you!

It happens… it will always happen! It’s called parenting a child with Aspergers Syndrome, more appropriately… Hidden Disability Syndrome! He looks no different, his ticks and traits, hidden within a mass of boyish ways, but make no mistake when they surface you’ll judge him, you’ll judge me, you’ll judge our life, our family, our values, opinions and sadly you wont stick around and realise your own silly mistake!

This April is Autism Awareness month, with the 1st of April being “World Autism Day” I ask, that on this one day… you see the bigger picture, you take this one day to Google the words Autism and Aspergers, you read with an open mind and an open heart, I ask that you leave the ignorance behind you!

The Sensory Processing Of A Child With Aspergers Syndrome

It’s a saturday afternoon, myself and the children are sat in our local  cafe where I’m treating them to lunch and their favourite milkshake. Sat across from us, there are workmen sipping their tea as they delve into a spot of all day breakie. It’s a little noisy but that’s just what you expect from a cafe, isn’t it!

Suddenly I hear the sound of scrapping metal, it seems drawn out, lasting forever. I look round to spot one of the builders doing a grand old job of ensuring he gets his full five quid’s worth, as he fights to scrape the remaining 4 or so baked beans onto his fork, before finally shoving them in his mouth and down his throat. I turn my head in the direction of Little Man (aka a boy with Aspergers) who now has his hands firmly placed over his face, shaking his head, he mumbling words I cannot understand, yet I know what his saying, his saying, “Mum, let’s get the hell out off here!”

Sensory Overload is powerful, so much so, it can make a person actually vomit. So, if my Little Man is so sensitive to such sounds, why take him to a place they are bound to be found? Little man loves the cafe and I want him to experience such small pleasures such as eating in one! Some days can be worse than others, his done well at trying to take in these sounds that cause him so much distress, finding other methods of dealing with it! Yet, this is all dependent on his current state of mind and how he feels physically at the time (I guess it’s like anyone and anything, example being how things are much harder without sleep)!

Such simple things interfere with Little mans senses and I feel as his mother, it’s my duty to help him find ways to regulate them best he can! He has to live with many sensory triggers, some that will never be fully avoidable, I want to be sure that he can cope both physically and mentally. Given Little man faces many of these sensory triggers on a daily basis, myself and his OT based within his school, are trying our hardest to help him to process these things better as to not let it take over completely making him stressed upset or simply meltdown! The sound of scrapping metal is just one in a long list of sensory processing difficulties the Little man experiences with each day, and was actually one of the first indications that Little man had such difficulties within this area! This was when he was not much older than 2-years-old.

Certain tactile experiences are yet another sensory trigger for Little man, he will refuse to wear certain clothing garments dependent on their material, he refuses to drink from plastic beakers or eat from plastic plates, stating it leaves him feeling fuzzy. It’s taken a long time to work out what does and what doesn’t upset him, I can safely say, that in many respects, especially in regard to the clothing issues, I have it nailed now! Then again given he refuses to wear anything other than joggers, it isn’t hard to establish what it is I should be offering him to wear everyday. We are so lucky that his special school for children on the autism spectrum actually allows joggers as part of it’s uniform! Mainstream school and its uniform policy caused little man great distress, he was even excluded from school on a number of occasions for sensory outburst when demands were made to tuck his shirt in! For the average person, that’s like requesting they stick their head in a hot oven!

The good news was “Bob the builder” (aka workman opposite) had managed to capture all of his baked beans so had finally stopped chasing them around the plate! Bad news was, Bobs crew also liked to engage in some good old grub chasing and soon enough Little man let rip!

Raising to his feet he turned in the direction of the workmen and with great volume stated, “Id much rather you licked your plate please” Now, a little shocked I’m sure they were, after all, it’s not every lunch break you get told to lick your plate by a small child (well, this was a good 3 years back, before his massive spurt in growth)! However, what they did next I didn’t expect! One goes for it… literally licking his plate while laughing and stating in between licks, “like that son, is it?” Little man had meant it all right, they may have thought my Little man was some little sarcastic wise arse, but I knew he meant it and was rather pleased at the fact this builder had taken his meaningful advice and got stuck in, licking like a dog.

Regardless of the fact I did laugh inside, (quite some amount in fact) I didn’t want little man thinking his chosen technique had won him silence, he would only be ordering the licking of plates every single time we ran into these problems, and let’s be honest, you always get one person who fails to see any funny side of anything whatsoever! This could therefore result in Little man getting hurt, maybe even being beating up as he grows older, and what mother ever wants to think about such a horrible thing happening to her child!

I’ve defiantly decided to start the Little man on a sensory diet, which before you ask, doesn’t have anything to do with food! Basically , this is a programme you can do at home which is made up from a series of activities and exercises, designed to help with sensory integration.

Here are some great ideas to introduce a child with Autism, Aspergers or just SPD to a series of Sensory based activities things they may normally find difficult to process.

Tactile board

Introducing a range of textures as part of a tactile board, some children with autism like Little man, are incredibly sensitive to touch, others pose no issues at all. Hanging a tactile board in a bedroom, children can be encouraged to touch the board regularly, offering rewards for achievements.

Sensory messy box

This is great for both the sensory seeker and the child who is said to be tactile defensive. In terms of the sensory seeking behaviour displayed by some, the Sensory Messy Box offers children a safe activity (reduces sensory seeking behaviours, such as rocking spinning, clapping and more). For the child who is defensive, lots of encouragement and continued reassurance is the overall key. I’m planing to use incentives like mini Lego figures, to get the Little man wanting to put his hands in good fun messy coloured shaving foam, to hopefully dish about and retrieve them.

Dressing up box

It’s always best to fill a dressing up trunk with both the materials your child does and doesn’t tolerate, as having them with him, (especially if he likes the look of the costumes) may just help him feel more motivated to make contact with the different textures on offer!

The creation of a sensory pad (aka Little man’s bedroom)!

 Something I’ve felt the desire to create for, so… long! First I was put of the idea, having viewed some top sensory products, that included, lights, beds, toys and more at an autism exhibition. These items were innovative, top of the range, extremely clever, providing clam and tranquility, but sadly I found them to be priced outrageously high. As time passed, with much googling, window shopping etc, it became clear that this can be done on a smaller budget! High street stores do many sensory items, there just not labelled that way! Imagination and creative thinking are also the inexpensive tool needed for creating such a space. I’ve been using Pinterest and have been designing the board “the sensory room” as to collect inspiration and share it with others also wanting to create a place to help their child destress. I will update some more later in regard to my progress in building a Sensory pad, though do feel free to follow me on Pinterest where you will find this board, amongst other boards boasting lots of ideas for parents of children with special needs.

Well, I will stop there for now, this post is becoming beyond long, plus the Mac is ignoring most of my commands and doing whatever it wants to right now!

I’ll be sure to share some more fun sensory ideas over the coming few weeks, in the meantime, if anyone has any tip or creative ideas to share, please let me know in a comment as I’d love to hear them.

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• The 2012 London Toy Fair Brings Great Toys For Children On The Autism Spectrum (aspergersinfo.wordpress.com)
• Our worse ever meltdown & coping with little sleep (aspergersinfo.wordpress.com)

Failing to regulate one’s own emotions

I’m the type of patent who likes to embrace her son’s diagnosis of Aspergers Syndrome, though there are days, when I fail to focus on any positives, these long hard days filled with meltdowns, the explosive type, filled with rage and a good degree of violence!

Violence used to be a huge problem back when Little man was between the ages of 7-9 years old, however, with a lot of work we managed to get his explosive ways under control, and although he has always hit his younger sister, this become less frequent and manageable. I myself used to be his punch bag and with some two years since he had hit out at me, I thought this milestone had been well and truly achieved.

Since Little man turned 11 on the 1st October 20211, things have once more turned nasty and have progressively become worse since. Having seen the huge reduction of such violent and challenging behaviour outbursts over these past 2 years, their return has simply knocked me sideways and I’m completely at a loose on how to fix this!

His violent ways often spring without warning, leaving myself or his little sister in the firing line. Strangely, since leaving the mainstream school and receiving a full education alongside his peers, in a place he is far more happier, this violence has grown worse at home! he went through so much at mainstream, he was isolated, excessively excluded and sadly discriminated against, yet despite this he didn’t become violent towards me, though he did self harm on a few occasions! So why now? School life seems good, it is terribly frustrating that he is now in the right educational setting, yet another issue as serious and worrying as this should arise! There is no bullying and I know that he happy at his new independent special school, so why?

His not 7 anymore, his a reasonably sized 11-year-old boy who can pack a pretty impressive punch! This is a child who despite his nick name, ‘Little man’ is now almost as tall as myself! My son is now, taller, stronger and about to experience a flood of hormones… if not already!

Lately, meltdowns have been highly explosive, his jackle and Hyde personality takes over without warning and my usual tools of redirection that I’ve created over the years, are sadly little use, if any at all! The Switch in mood is so sudden that I now struggle to see it coming, I cannot decode a trigger, something I would have once described as one of my talents! I usually see the forming of a dark cloud building and as a result, I am often able to clear it quickly! Sadly once more, myself and his sister have become his target when frustration reaches its limits… I have found myself jumping in the path of his blows to protect my daughter and regrettable, just recently she tries to return the favour 😦

Thursday the 9th February 2012, Little man was sat at the PC, writing yet another one of  his business plans for when he reaches adulthood, a calm presence filled the air and everything was… well, fine!

Suddenly, Little man unplugs my iPhone which happens to be charging, I tell him this and politely requests he replugs it in to the extension lead, while reminding him he should ask if he can use the extension in the future! This didn’t go down well, shouting and screaming he tells me to F#*k off and plug it in myself as it’s my charger!  I actually did this in the end, as not to fuel this any further! However two minutes later and for no apparent reason whatsoever, little man randomly switches of the TV which his sister is watching! I ask why, to which he states, “if I can’t do what I want, she can’t watch TV” This was all the crap I needed! Already feeling quite unwell, as if a ton of bricks lay on my chest, I told him I wasn’t in the mood as I felt reasonably unwell, to which he continued to refuse. Getting up, I head to the TV , Little man runs off to which I presumed he was heading for the extension lead to once again remove my charger… Like this was now a game! Though actually, I couldn’t have been more wrong! Suddenly as the TV screen flicked on, I felt a pain fly up my back… No bloody way! Turning my head slightly, my fears were confirmed, stood behind me was little man who had just punched me in the centre of my back! Feeling so angry I ordered that he went to his room, now I know I should have persisted, but given the fact… my 2-year-old toddler was becoming increasingly distressed and I didn’t want my 9-year-old daughter getting hit, I scooped the toddler up from his chair and ordered my daughter to follow me to the bedroom where she could finish watching her film.

Little man would now stay out the way, downstairs and hopefully become much calmer, he could finish his business plan before settling down on the sofa or heading to bed! Again… could I have been anymore wrong? He followed us upstairs swearing all the way  and at one point he even beat the hell out of my bedroom door… AGAIN! Losing the will to live, I informed him, I’d call the school and see if they could help me fix this, he flipped out, telling me to stay away from school before once more setting himself upon me like some frenzied lion! I know that this was partly my fault now as he then felt threaten. Although I normally reframe from such behaviours, it should be understood that by now I was close to breaking point, tears quite literally streaming from my eyes as I tried to think of a way to turn the situation around.

It got to the stage where the little man needed to be carried into his bedroom, I must have incurred super human strength as I lifted him, ignoring the thumps and pinches, I placed him in his room making a bee line for  the door, though I wasn’t quick enough as I found myself being hit by a number of heavy flying objects. Before I knew it he had taken up to running at me inflicting an array of high flying kicks directly to my body, seriously consumed with anger, sadness and sheer frustration, I told him that if he laid another finger on me I’d call the police! Again this wasn’t the best choice of words because 1) He felt threaten, 2) I pointed in his face, 3) he kicked me instead… well, feet do not have fingers do they!

I  was actually now extremely exhausted by the whole experience that had been continuing on for some 2 hrs now, not being able to bear a minute more of this, I turned to leave the room when he gave me one final blow in my back which  just happens to be the act that pushed me over the edge, giving me an intense desire to hit him back (which I don’t do, and don’t want to do)! I spun around and instead of hitting him I began screaming the words “No…… more, please no more!” as I proceeded in kicking toy boxes that resulted in them flying across the room, I also found myself knocking books from their shelf… I had lost it! Suddenly there was silence… stood shocked little man stared through me, he then lowered his eyes to the ground and started to cry as he asked me, “Mum why have you done this?” Then he very cheekily said out loud, ‘ Mum, you really should control your anger’ He no longer chased me just sat scrapping Lego bricks back in their rightful boxes, I retreated to my bedroom only to surprisingly discover the toddler and his sister were now spread out across my bed sleeping! Closing the door behind me I sat with my back against the door, tears filling my eyes as I looked at my bruised arms and legs, I cried, not due to the physical pain but the emotional one, plus the uncertainty and unanswered questions left me feeling isolated and alone! Should I be calling the police, what would make him stop! I couldn’t allow him to grow up with this approach to a problem, it wasn’t a solution! I love him and have that understanding… What if he hit someone else who then turned around and battered him, would he be behind bars by his teen years or even fall in love and beat his wife! Consumed with worry and knowing it was my responsibility to avoid any of the above happening! I grabbed the iPhone and visited my A boy with asperger’s Facebook page where everyone was so brilliant helping me find answers, making suggestions or just giving me a virtual hug!

The house was now silent, looking around his bedroom door I notice his laid out on the floor surrounded by a mass of Lego, I quietly pick up what seems like thousands of Lego bricks, I then slip a pillow under his head and place a cover across his body, kissing his forehead I then turn of the light (they is no way, I’ll even try to move him, if he wakes it could be an even longer night than it has already)!

I didn’t sleep for the remainder of that night, a host of things crammed my mind inducing a type of dull headache! What now? We have asked for help, but what with a massive waiting list for a CAMHS behavioural therapist, an LEA that avoid me like the black plague, I’m running out of options! Is there any respite? No! Do I look like it would help? Of course! With a Government only interested in throwing money at the 2012 games, I sadly hold little hope, after all our family situation isn’t as important as a sporting event is it? Well, it’s not every year we host an oympics…. but it’s everyday I host a meltdown, so…. I guess we will have to wait, after all we’re good at that, wouldn’t you agree?

Related articles

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Questioning your coping mechanisms

Image by rosefirerising via Flickr

Some days are great and others… not so great… yesterday was one of the latter!

Unfortunately a family row commenced at home yesterday (something I wont go into on the blog) however I do believe that as a result of this, a series of high-profile challenging behaviour was demonstrated by my little man. In all honesty, the behaviour was off the scale and I really did struggle to maintain sanity!

I do understand that arguments should not break out in front of children, especially those on the autism spectrum, already easily tipped into an overly anxious state of being, but I’m human and there are times certain situations commence, especially when you find half the arguments are caused by something or another your child on the spectrum may have done or said, worse the person who is arguing with you just can’t leave it a lone, refusing to stop!

I thought it would properly be a good idea to take the children to my mothers, we could see my mum and chill for a bit! Little man could spend some time playing the PS3 with my sister’s boyfriend and all should convert to something far merrier! My plan was going ever so well, though as the evening approached, little man began getting worse and worse… before I knew it, he was throwing a load of nasty swear words at me, why proceeding to kick, punch and lastly spit at me.

God I felt like running away and staying away! When your child has a tendency to throw a load of offensive nasties in your face, you tend to get used to it (in a wrong kind of way) though sometimes such obscenities hurt a thousand times more than any violence… and this time his awful name calling was becoming much to hard to bare. Little man finished his almighty meltdown with a hard punch in my arm and a thump in his sisters back, all while his little brother of two sat screaming! It was at this moment I actually thought… Maybe it would be better if his not here any more, maybe he should live some place else!

I felt such a mix of overbearing emotions as I tortured myself over the thought that had entered my head! I felt assumed and heartbroken how I could even think such a thing! Yet.. at that time as he stood showing no remorse for his actions and I watched how he continued to lash out at his sister, I know I couldn’t help it, I just couldn’t! Every time I stood trying so hard to reason with him, he’ll just laugh and swear! I seriously felt complete despair, lost on where we go from here! I just felt like going to bed forever!

Day’s like this, I wonder what happened to my Little red-haired boy? Though he was always noticeably different, he would sit watching his favourite Thomas video or sit happily playing (even if it was mainly alone… he seemed happy, that’s what counted)! Not anymore! I just see an angry child, who gets anxious, depressed, violent, and often acts in quite an evil and scary manner!

As my Little man grows into someone who actually doesn’t resemble that of a little man at all, I fear for him, I fear for us as a family! At 11 he is reaching the stages of puberty and with it I notice so much more anger, the ability to care less about the people who get hurt in the cross fire. I therefore question my ability to control such behaviour, longing for an answer! As the little man grows bigger, stronger and sadly more violent, I worry he will hurt himself, me or his siblings! Though there is one thing that I fear that little bit more…. Asking for help!

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The night before Christmas

1

DAY TILL CHRISTMAS

Well, it’s Christmas Eve, the kids are super excited, though little man’s brain seems to have become somewhat over stimulated by the whole thing.

No children are yet in bed and if I hear the word Nerf or Monsters high again, I think I may go for a long, long…. walk to ‘No Man’s Land’.

Harley is now 2 and he understands that bit more, I love that he is excited and keeps saying “HO-HO-HO Merry Christmas” in a little deep tone, it’s just super cute.

I’m still baking Christmas cake and will be for the next two hours (bear in mind this mum is no domestic goddess, so here’s hoping it turns out Ok, well, edible at least)!

Have I even wrapped a single present out of the hundreds of gifts bursting to escape their designated hiding places (the wardrobe, airing cupboard and under the stairs) to name but a few!

Hell, no of course I haven’t!

I think it’s a little crazy, I’m the mother of a child on the autism spectrum, yet organisation and planning is like an unknown second language to me! Seriously, I think I spend so much time making sure all them little things that tip my little guy over the edge, are just right in-order to avoid the mighty meltdown! The end result means that all the bigger stuff is left for me to tackle at some crazy hour! Will I sleep tonight? I can see me and Santa having a glass of something stiff and a mince-pie together tonight, So… that says it all really!

There is one Christmas Tradition I don’t want to miss (but sadly I may have to).

Midnight Mass is an event that I like to see in Christmas with, I’m not overly religious but somehow I find myself sat in the church whenever I am down or I just need some place quite to reflect. I used to live in a beautiful area that had a huge heath with a church sat right in the middle, that’s where I used to go to attend Mass and it was totally magic.

The Children’s father has offered to be with the children so I can go, I just can’t see me having the time nor energy!

Our very purple Christmas tree replacing last years snowy white tree.

Regardless of the big Christmas rush I am really looking forward to watching the children rip open their gift, even if I know Little man will want to know what shop each was brought and the amount they cost (and there just the ones he didn’t google and point me too). Yes… I’ve kept all the receipts, not only in case of problems such as, toy failures or the need for returns, it’s also to give to the Little man to save me reeling of all the prices and shops from memory (Oh the joys of parenting a child with Aspergers)

Merry Christmas everyone

I hope you all have a truly amazing day.

Love all at A boy with Asperger’s

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