Tag Archives: anxiety

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

8 Jan

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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.

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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.

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Preparations for Halloween

12 Oct

I love Halloween I’m a big kid at heart. It’s more than the actual night of Halloween that excites me. Its the fun leading up to it.

We do lots of crafting, where we make spooky decorations and funky treats. At the moment we are actually making spooky bookmarks, a creepy wreath and some freaky masks. These I plan to show on my sister blog Mummy of many talents over the next couple of days or so.

Little man can be a bit funny when it comes to Halloween. He doesn’t mind it if we go out of the house, he even enjoys a spot of trick or treating around some Pre selected neighbours houses. However staying in is what seems to make him anxious.

One year, a couple of kids dashed some eggs at the front door. We returned home just as they were in the process of egging the living room widows and this really upset little man. What made it worse was the children were of course wearing mask so we couldn’t see them. When at school a couple of kids were laughing about the incident and poking fun at little man. It really upset him as he was puzzled how they knew… He failed to relate the two and draw the conclusion that it was in fact these very children who had done the egging.

He also watches to much news on the TV (as much as I try to discourage) so, when he heard about a local gang who were robbing people in their homes by posing as trick or treaters he begged we didn’t open the door the entire night.

This year my plan involves being out from the moment the sun goes down and the vampires and witches start parading the streets. We will do our usual visit to the neighbours then head to my mums for a glass of wine (soft drinks for the kids) and go home only once the candy hungry children have started to dispel.

Usually we have costume dilemmas when it comes to little man. His tactile defensive so really can’t tolerate anything for long. He usually removes any mask before we’ve even left the house. Not so long ago he reviewed an awesome Freddy costume but again the mask proved too much so this got passed on to little sister who now looks forward to wearing it.

Thankfully, his decided on a costume he wants to wear and although it requires him to wear a mask, its fitted with foam padding around the bridge of the nose making it much more comfortable for him to wear. It’s from Very who do some excellent Halloween Costumes

Its called the Evil Eye Skull and The mask has this awesome feature where its eyes flash red and fade in and out. It comes with robe and over drape and despite it being designed for a child aged 8-10 it still fits the little man perfectly. He has loads of room in it to more about and can wear it over his own clothes comfortably.

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Harley is likely to have his face painted or maybe I’ll have to get extra creative and find him something halloween themed but not to scary… After all he is only almost 3.

As for me, I’ve decided to go as myself! After all I’ve lost count of the amount of times my children have branded me a wicked witch… *evil laugh*

So… What’s everyone else up to? Anyone got any creative Halloween ideas to share?

The Big Fat Autism Myths

10 Oct

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!

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The Big Bang Campaign… Keep it before 9 p.m

9 Oct

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Remember, remember the 5th of November…

My guess is, many parents of children on the autism spectrum remember the 5th of November and remember it well!

The 5th of November is a night that will see the skies above us alight in an array of stunning, spectacular colours, but that’s not all we will see! Many of us throughout Britain will see not just our pets dart around the house in distress, but also a child or loved one.

Bonfire night is celebrated by huge numbers whether it’s by attending a large public display or hosting their own back yard antics. For some it’s a night of fun and laughter, a chance to meet friends, drink wine out of plastic beakers while eating hot-dogs smothered in mustard. For others it’s a night of hiding, turning up the TV and comforting their frighten child.

We grow up looking forward to such events, we loved them as a child and can’t wait to share a night stood by the bonfire with our own children. What is there not to like about this fun and eventful night?

Why don’t you ask that question to a child on the autism spectrum!

No, not all hate fireworks, but a large proportion of children and adults on the autism spectrum will spend the year dreading it! I wrote a last year about little mans fear of the firework! He thinks they are stunning and at a distance his not to bad with the big bang. But when there’s rockets flying about above his head, then bursting into a glittering infusion of colour, my child will likely do what I refer to as the “Army drop and crawl” Basically he fears the fireworks will come clashing back down on top of him, he freezes then drops, before embanking on his army crawl to safety. Despite this reaction, my little man could hold a sparkler all night long. As I explained before, it’s a sensory reaction, because the firework is above him and he cannot judge the distance between himself and the exploding firework, he then begins to fear it! My Little man feels much safer stood behind a pane of glass watching fireworks from the safety of his home.

For many people on the autism spectrum the dislike of fireworks relates to sensory sensitivity as-well as the dislike of “social gatherings”.

Even those who are not on the spectrum can have difficulties tolerating the loudness of a firework display, especially a big one! For the person with autism, this sensitivity to noise is sometimes so overbearing it causes actual pain. Now, can you even begin to imagine how hard that must be? I can’t and thank myself lucky that I do not experience such a difficulty. However this doesn’t mean that it doesn’t matter, because it does, it really does! Little man only has problems when we go out, so of course we avoid the public displays, or one parent stays home while the other treats the other children to a trip to our local display. That’s just how it is and always has been. I think that we are quite lucky, some children experience such anxiety that they require comfort from their parent throughout the night meaning little sleep is had by many.

I’m not trying to make you all feel guilty, nor am I saying this in the hope that you wont go to your local fireworks display or celebrate in your own way. I’m just asking that you all spare a thought for the families housing an autistic child or adult. I simply ask that as much fun as bonfire night can be, take a second to stop and think… Light your fireworks at a reasonable hour! Who is your neighbour, do you know a family affected by autism? Keep it early, keep it safe, keep it before 9 p.m.! That is all I ask!

“ Do you think that’s fair? If so, how about tweeting this post just once using one of the share button (tweet, Facebook, Stumble, etc.) located at the bottom of this post. You could even raise awareness on this one day, just by right clicking the image above and uploading as your profile pic on your social network” after all it is just one day!”

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A Fun Family Day With Thomas The Tank Engine

12 Sep

As a blogger I’m lucky to find some really exciting invitations in my inbox of a morning and recently I received one of these from HiT entertainment.

This was an invite for myself and the children to visit Drayton Manor Park home to Thomas Land. We would be reviewing the parks many attractions as well as watching a special screening of the brand new film Thomas and friends – Blue Mountain Mystery at the parks 4D cinema.

Alice-Sara was out for the day so myself and a friend took the 2 boys along. Little man had a big interest in Thomas the Tank engine from the time he could walk. His Thomas obsession was one of the many factors that helped CAMHS diagnosis him with Aspergers Syndrome, So, Yes, it was pretty intense. His now into transport as a whole but still won’t say no to a bit of Thomas if Tiny Tot is watching it! Little man collected everything Thomas the Tank Engine when he was younger. He has loads of the train sets (that are packed away and kept out of his siblings reach). It’s a shame as Little Harley who is 3 in December is now a huge Thomas fan and would love to sit playing with these!

Drayton Manor is a fair distance from where we live in South East London, in fact it took over three hours to reach the park by car. Nonetheless I felt that it was worth attending as the boys would absolutely love it! They were dead excited when we left bright and early on a Tuesday morning. Harley especially who was kitted out in his Thomas gear.

Two service stations, some sing songs and one minor meltdown later, we finally pulled into Drayton Manor Park some 3 and a half hours after first setting off.

The car park is massive and given this was the 4th of September, many children had just gone back to school resulting in us grabbing a great parking space quite close to the parks main entrance.

I decided not to take Harley’s buggy as I was guessing he’d be to excited to sit in it! I was right, Harley loved it at Drayton Manor and spent very little time sitting with the exception of the cinema and the rides.

As many know Little man 11 has Aspergers Syndrome and Special needs. He was entitled to a ride access band and this was collected from the guest services. I’ve written an additional review that looks at the parks facilities for those with a disability or special needs (particularly an autism spectrum condition) and this will feature on the blog following this one.

Next stop was Thomas Land. Now we only had a quick peek as we needed to head on over to the cinema and as we had little man with us, as to avoid any anxiety we decided to go over a bit earlier than needed so to avoid any queues. Lucky the screening was closed to the public so it was ourselves and a small number of other families who had been invited to review the film. This was perfect as it meant little man remained rather calm avoiding any meltdowns.

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We were given some popcorn and bottled water and headed inside. HiT had organised for a few of its fabulous PR team to demonstrate some of its newest toy releases in connection with the movie. My Harley’s eyes lit up like beaming flashlights as soon as he entered the room. There was some great games and play sets on show. Harley went right for the Mega Blocks – Blue Mountain Quarry (which I’m going to have to buy him for his birthday as he keeps request to play with it)!

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Little man coped well with all the people and sat in the corner playing with his brother Harley with a great remote control Thomas.

The film was being shown in 4D and we were pretty excited (even me at 30 years old was itching to get in there)! We were called for the screening by no other than the ‘Fat controller’ himself and inside we were shown to our fantastic seats.

The film was brilliant, it ran for an hour which was long enough for a toddler. The storyline was good and easy to follow, even for the youngest of audiences.

In Thomas’ latest adventure, the Fat Controller sends Thomas to work at the blue mountain Quarry where Thomas spots an engine he’s never seen before trying to hide. Determined to get to the bottom of the mystery Thomas tracks down befriends Luke who tells Thomas he’s hiding because he did something so bad he could be sent away from the island of Sodor forever! Thomas does not believe this and set off on a journey to discover the story of this poor runaway engine. On the way he learns of engines bought to sodor from faraway lands and an accident in Brendam Docks where and engine fell into the sea. But only when he’s learnt every piece of the story can Thomas convince his new friend that there’s no reason to hide.

The 4D effects were perfect for the smaller children. Every so often the chairs would move! There was also bubbles when the lights come on and fake snow that gathered on the stage as the lights went down.

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After enjoying the movie we then went off to enjoy the rest of the parks many attractions, in particular Thomas land. This was the perfect place for a Thomas fan, it truly is one-of-a-kind, a real Thomas paradise!

Thomas Land boasts 12 wonderful themed rides, a spectacular indoor play area and a shop filled with fantastic Thomas & Friends merchandise.

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We went on almost every ride at Thomas land, we even did the Troublesome Trucks Coaster – a 220 metre roller coaster that runs up and over Thomas Land… Ok it’s nothing major for me, I’ve been on some massive beasts but for the 2 year old… I was surprised. It does go really fast and has some pretty sharp turns! I really thought he wouldn’t meet the height restriction, but he did and given he was jumping up and down with excitement, we went for it and yes, he loved it!

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Little man also had a fabulous time he really wanted to ride the Ben10 roller-coaster, only he got a little anxious and changed his mind. In order to cheer him up I got him a large hotdog and we chilled by the parks stunning lake and fed the ducks before finally checking out some of the shops such as the Thomas gift shop and the fabulous cartoon network store.

Not that we needed anything! HiT had provide both of the boys with a Thomas goody bag following the film and Oh my… what a lovely goody bag it was!

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The kids had an awesome time at Drayton Manor Park – Thomas Land. They also enjoyed the 4D movie Thomas and Friends – Blue Mountain Mystery which is now out on DVD for all to enjoy.

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During our long drive home, there was silence… Yep, within 10 minutes of getting in the car both boys were fast asleep.

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Thanks HiT the boys had an amazing day at Drayton Manor Park.

Checkout our Video of the day.

The Panic Attack

8 May

Not every day is easy when you’re an 11 year old boy with Aspergers Syndrome.

Little man is currently in year 6 of his independent special school. He will be making the move from primary to secondary in just a few short months. Although this is within the same school complex, this is still a massive step in Little mans journey.

Maybe this is why his current teacher is doing a great job to teach the children in her class some effective steps to independence. Every week Little man and his class peers embark on a creative cooking challenge which results in him bringing home some really tasty treats. However last week not only would they be cooking but first they had to go out shopping and purchase their ingredients.

Little man was dead excited and he left the house in high spirits despite having very little sleep the night before.

However at about 2 PM I received a phone call from his teacher. She explained that little man wasn’t feeling himself and was actually quite upset. He had expressed a need to speak with me so I said to put him on the phone. She was right, little man was indeed very upset, he sounded muddled confused and panicky. He repeatedly told me that he didn’t feel right and that I just didn’t understand as something seriously wasn’t right. Normally when the Little man isn’t feeling well he is rather quiet and reserved, so something definitely wasn’t right here!

Now I don’t drive and the school Is a good few miles away from where we live. Little man gets transport to and from school which is provided by the LEA. I asked him if he could possibly wait as he only had one and a half hours remaining until he was collected, this however didn’t go down well and he seemed to become quite erratic in his speaking.

I was quite concerned and it seemed he’s teacher was too as she volunteered to drive him home herself. Yes, I’m not actually used to such kind and thoughtful actions as things in mainstream school were of an extremely different story.

His teacher accompanied by a TA bought him home within about 20 minutes or so, much quicker than I could’ve collected him myself. This I was most grateful for.

Seeing little man and from speaking with his teacher and TA it was pretty apparent that little man had experienced a panic attack. He had claimed several times that he was feeling dizzy and he even asked one of his teachers if there was a possibility of him collapsing.

Little man looked tired and as white as a ghost. His forehead was sweaty and eyes were red, there was no doubt within my mind that this particular panic attack had been caused by his lack of sleep combined with the excitement of his planned day of shopping and cooking with he is friends.

He also had a bit of a tummyache which he had complained about the night previous. Once home he spent quite a while in the toilet something you wouldn’t find him doing while in school. Now in his own environment he seemed to relax and calm down somewhat. Lying on the sofa with a blanket over him, he drifted off to sleep pretty quickly.

Panic attacks are extremely scary for any adult let alone child to have to experience. The mind is a pretty powerful tool and during an attack there really is no reasoning with this tool. How do I know? Because I’ve been there before! My first experience of a panic attack was when I was a teenager. Seriously I thought I was going to die right there on the street and in my panicking state I started requesting that random people call me an ambulance. There is no words to describe the feeling you experience during a panic attack. The sheer terror you feel within. You really feel close to death, at that moment in time you actually couldn’t feel any closer if you tried!

Those who’ve never experienced a panic attack will never know the true extent of how frightening an experience this really is. The whole world around you is moving yet somehow you feel impounded to the ground your body is heavy, too heavy to move, your heart beats faster and you’re hand begin to uncontrollably shake. Your mouth feels dry, it’s hard to swallow even breath. I wouldn’t wish it on anybody especially my own little boy.

#HAWMC Day 27 – Difficulties and Victories

2 May

Now admittedly I am writing post 27/30 in the “Health Activist Writers Month Challenge” (#HAWMC) some 5 days overdue and yes I still have 4 more post to write (this one included). As its now May, a brand new month, technically the challenge has come to an end but come on, cut me some slack here! Mother of three demanding little monsters and them monsters come first. However, having come so far and not being a person who gives up on things easily I am determined to see the challenge through to the very end!

So… The 27th challenge was to give my top 5’s. These consist of the top five things I find most difficult as a parent of a child with Aspergers Syndrome as well as my top five victories (the things that kept me going when things got tough or the battles we over come)!

Now having bashed my tired brain for a while, I finally compiled a list for each, broke it down to the required number, explaining my reasons for each.

Things I find most difficult

1)Sleep: Yep, it has to be the total lack of sleep! Yes, this is more difficult than the meltdowns, swearing and black and white thinking style (such a thinking style can create problems). I often state that I’m used to the crazy sleep pattern that has been part of my life for donkeys years and as a result I’ve adapted my body clock, but in all honesty, despite this being true it really doesn’t make it any easier! Some days I’m fine where others I’m seriously having a hard time dragging my own arse around the entire day. I snap more easily, cry at day time TV and not really dig the huge black bags that dangle under my eyes most days.

2) Anxiety: Little man can become extremely anxious about the “smallest” of things. He can get so worked up that he loses himself in a thick fog of panic. Little man needs lots of reassuring when his like this! He may ask the same thing continuously, take many trips to the toilet and pace about loudly speaking to himself. His even been know to quite literally worry himself sick!

3) Discrimination: This is not a trait but something that comes with this diagnosis and many others besides. Discovering that those that are meant to do the best by your child, are actually treating him in a way that sees him extremely disadvantaged to that of his peers, is a terrible thing to witness as his mother! The fact that my child starts to become aware of this treatment, makes the situation one million times worse.

4) Days Out: These are meant to be enjoyable but yes, I do often find day trips and holidays quite stressful as does little man. This sometimes restricts our options, if deciding to embark on any spontaneous trips I need to do so at my own risk. Nonetheless, good planing and preparation is the key and combined have resulted in some good days out with little problems.

5) Meltdowns: As if these acts of built up exploding stress wouldn’t make my list… Of course they would! What can I say except who really wants to deal with screaming, swearing, crying and violence! But above all else the most difficult part of parenting a child with Aspergers is actually having to see your child become that overloaded and at times not being able to make things better for them! No mother wants to witness they’re child in this state.

Victories

1) Diagnosis: This itself is a victory, as to finally have that label actually opens more doors to services and support. I’m not starting you no longer need to fight for things, but without that label you have even less chance of getting anywhere.

2) Results: Having fought some almighty battles to obtain everything from acknowledgement, respect, suitable education, fair treatment and more, I can tell you it really isn’t easy! You discover that those you put your trust in are those you may need fear most! It’s tiring and at times you feel like just throwing in and trowel. You don’t, you just keep going and when the good finally happens its the most amazing feeling ever!

3) Progress: Watching the progress my son has made since attending an independent special school is wonderful! When your son goes up 7 reading levels over a few terms you know you made the right choice.

4) Rewards: Every time my little man receives an award at school whether it’s for improvements in behaviour or that of his learning progress, I’m overly proud. Of course I feel the same for my daughter, but these are things little man never received in mainstream and it’s lovely to see how such achievements rebuild his fallen confidence.

5) Inspiration: The inspiration my child’s diagnosis has given me to bring awareness and support to other parents of newly diagnosis children.

So, there you have it, my little list of 5’s.

This post is 27/30 in the #HAWMC

#HAWMC DAY 18 – Inspiration

23 Apr

Stories can be used to establish social routines (using ‘fill in the blank’ procedures) and improve the ability to make social judgements. They may also be useful in helping others better to understand the child’s perception and responses.

 Children With Autism & Aspergers Syndrome: A Guide For Practitioners & Carers (By Patricia Howlin)

 The above statement is one made in one of many books I own that covers topics relating to the autism spectrum.“Children With Autism and Aspergers Syndrome – A Guide For Practitioners & Carers” was one of the very first books I acquired on the subject and I will still often refer to it from time to time. So, naturally when day 18 of the #HAWMC was set with the prompt “Pick a random statement from a book and write about it for 15 minutes” this was my first port of call. 

 There are hundreds upon hundreds of statements made within this particular book, so, why this one?

 I feel it’s important to highlight the above to other care givers, especially those with a newly diagnosed child. Yes, this is a life long condition that cannot be cured. Nonetheless, there are things that you can do to help your child develop better social interaction and communication skills, along with important life skills with the use of some commitment and good old-fashioned creativity.

 When my own son was first diagnosed, I didn’t really get sat down and given all the answers, if the truth be told no one really has them to give. Yes, I was sat on a chair amongst an entire room of professionals and all though I was asked that question… you know the one “Do you have any questions” I just didn’t know where to start, I just remember having plenty. I was therefore sent on my way with a folder of bits and pieces and a very jumbled mind. 

 It wasn’t in-till long after the little guy was diagnosed that I attend something called the “Early Bird Plus” designed for both caregivers and teaching professionals caring for or teaching a newly diagnosed child. Now although “Technically” Little man wasn’t exactly newly diagnosed, I still wanted to attend and have some of those unanswered questions answered! 

 It was during this course that I was first introduced to the simple yet effective idea of visual prompts and clues. With this I didn’t only discover ways to formulate routines, making them visible to Little man so he remained aware of what was happening when and where, but they also still play a big part in Little man’s daily bathroom routine enabling him to better do things in sequence (though sensory sensitivities remain a huge factor we are yet to improve)!

 There are many ways to use these visual aids (kinda like the visual symbols used for PECS). They are also very easy to create or if you don’t fancy that they can be found normally on a string of websites and are mainly free to download. 

 I designed and created a great visual aid for use in the bath room and that of the bedroom. Although he reacted in the way I expected when introducing the aids I soon discovered he was using that of the one in his bedroom to help him formulate his bedtime routine! Ok, he remains an extremely poor sleeper, though he does follow the chart removing the symbol cards that I attached to some Velcro dots, placing them in the pocket I attached to the bottom of the chart. He now uses a written reminder he keeps within on of his many organisers. Nonetheless, the bathroom system remains in place and although his very tactile defensive his got the sequence going and is trying much better than before.  It’s my view that any positive improvements within this area really need to be fused over with lots of praise being given to the child.

 So, how else can we use pictures and words as a visual clue and symbol to teach our children the basics in making the right social judgements as-well as good communication and interaction skills to formulate good friendships?

 Some may have heard of social stories which are a great way of getting a child on the spectrum prepared somewhat for an unfamiliar situation such as a trip to the dentist or even a fun day out at a theme park. 

 You can easily make up a pretty effective social story with no more than an exercise book and some pens! However using photos (if available) of the places that you plan to visit and those people you are visiting (of course with their given permission) can really help a child with autism or aspergers feel more prepared with the situation and therefore calmer on the day! Lets face it, who likes visiting the unknown? Those with autism have difficulty regulating their emotions and that of anxiety can trigger a number of undesirable reactions both during the lead up and that of the day. 

 Little man is growing up, his heading up to secondary school (lucky for us this is one that is attached to his current independent special school). People find it difficult to understand that many of Little Mans sudden outburst are caused by anxiety. I think this is not only because Aspergers is known to be the “hidden disability” but more the fact he can come across (at times) rather street wise, especially more so now. The truth is he is improving with the help of his school, his friend next door and some social modelling from others, but his still more than likely to say the wrong thing, something inappropriate, generally considered social unacceptable. But there are times I do wonder maybe they got it wrong then bang… something happens, a meltdown, over intense conversation on his special interest and the inability to shut off. Then there’s his all nighters and inability to switch off. That’s the thing, your child may have problems with social skills but as they grow they can often act a certain way for a chain of different social situations. I’m not stating Little man is socially correct all of the time but his learning. One thing I do try empathise & encourage is for Little man to be himself as he has at times totally moulded himself in a certain way to fit more comfortably into certain social groups and gatherings. He maybe a success but once home he off loads and he will normally have a hell of a lot of bottled up stress need releasing. It’s important that he knows how to behave for an array of situations but to reframe of hide who you are by either going into oneself coming across as a bit shy or maybe even a loner to avoid running into difficulties or act a way because it gets you liked by others, both something  Little man engaged in during mainstream, I can tell you from a parental perspective that this isn’t anything other than a disaster waiting to happen. 

 As many a parent of a child on the autism spectrum can probably vouch, we as parents are presented with that bit more reason to worry when it comes to our children growing up and therefore having to experience new things as they embark on their journey to adulthood. Something like visuals and good social modelling are of the up-most importance and will in time become a natural way of life and acquired parenting skills that we will find ourselves doing with little if any thought at all.

 You know your child and will learn what works best for them and you as a family. As mentioned earlier within this post, Little man no longer uses visual symbols for within his room but now uses words, just as you or I may write our schedule of order of events in a personal diary or organiser , this works and if even he remains awake till 3am with school set to kick of a few hours later, his still able to do those important steps to prepare for bed from brushing his teeth to putting his clothes in the wash. As for preparation for a new situation, we don’t always get things right (those that read about our Butlins holiday at Christmas will more than agree that it didn’t go smoothly) yet at times things go much better than maybe they would have if the effort to prepare Little man wasn’t made. I did the social stories with pictures, but he sees things very black and white so its important to have visual reminders of “Real life” places, people, etc this helps him to formulate some kind of image and expectation. The only danger of this is to be careful not to overdo it as spotted difference or unexpected changes could make the hard work go to pot!

 Lately, I’ve tried to be more creative with how we do the above. I’m agree he knows he sees thinks differently and thinks and processes information a tad different from his age peers. I’m also aware that as his grown his not welcomed anything that causes him to stand out so I’ve tried to continue with the preparation while making it more fun, age appropriate and fun. Last week why searching the App store on my iPhone 4S for some type of daily planer and social story maker, I found Comic Book. As you do, I had great fun playing around with it and trying different things. I created the picture below of my toddler Harley, and sisters new baby Riley. It has a number of stickers with great phrases, themes, colours, fronts and more. After testing it with the toddlers pics, I felt assured that this would be a great fun addition to my social preparation tool kit and Little man agreed it was pretty cool. Maybe with the doctor’s permission  you could snap a few pics during the next appointment and use this for your comic strip! For me, this is an App that will provide more than just good fun. 

 Other ideas are that of video recordings of places you may visit, memory books of the places you have been to before or even use small visual cards, laminated and hole punched and added to a curly key chain key ring and attach to your child’s belt loop. This is perfect for non-verbal children as they can use the symbols as a way to communicate their basic needs such as using the toilet while at school instead of become frustrated or upset. Again all these are easily made and need not cost a fortune.

 I also mention in another of my recent #HAWMC post about the brilliance of Pinterest, I’ve created a great Autism and Sen board that’s packed full of ideas to help your child in the areas discussed and many more… Yes, total pin head here! 

Below are some ideas on creating and using visual aids. These are taken from the autism & Sen board on my Pinterest and original author also included with these pins

from the blog rockabyebutterfly.blogspot.com

from the blog carrotsareorange.com

from the blog etadventures.blogspot.com.au

 Visuals may not seem appropriate right now, you may feel your child doesn’t need them? Remember at some point in our life we all require the use of prompts and instructions as-well as organisation… a work timetable or organiser. When we experience anxiety concerning an upcoming situation or event we form a mental picture which isn’t always easy for a child like mine! Early intervention is the key so if your child could do with a little prompt or preparation, why no give visuals and social stories a try? 

#HAWMC DAY 12 – Stream of Consciousness

13 Apr

Today I looked in the mirror and stared at the reflection before me. I feel myself shudder before turning away quickly as I desperately try to block out the image I’ve just seen staring back at me.

How bloody superficial and yes, I suppose it is! Ok, I may not be back in my size 8 jeans despite my youngest transforming from baby to hyper 2-year-old, but life isn’t just about a jean size is it?

I’m no superficial chick, honestly I’m not. However, I am one who can find herself whirling down that downward spiral into the dark land of no mans land!

Many woman experience the issue of needing to feel comfortable in ones own skin, it’s just that for some… Things go a smudge too far!

I find it hard to write about my past demons when it comes to food. I’m pretty good at expressing my innermost thoughts through my writing especially when writing about my life as a parent and that of Little mans Aspergers Syndrome but this is different, something of a challenge!

Yes, there has been some soul pouring post, I’ve laid myself bear when writing about my almighty battle with OCD, to face it, reframe from fear and I guess… Live with it (that or the prospect it’s never far from sight).

I’ve also told of my journey to combat anxiety and the horror of the recurring panic attack… Unfortunately, these have never left my crowded mind and although I often tend to find myself chest high in the deep of things these often hit me at different periods within my life at least allowing me periods of time panic attack free.

Although I’ve written some pretty soul pouring post whether about discrimination, depression or something else all together my past eating disorder is something I hold back on, it’s not even a subject myself and family often speak about though it did land me in hospital at just 11 which still breaks my heart thinking about.

Regardless of how dispirited I feel when looking at my own reflection I try my best to bury any bad thoughts deep in my mind, I’m a mother of three children, I have my own 9-year-old daughter to set an example to.

So, here I am, trying to do things the right way! No quick fixes, no taking things that bit too far. The truth is no matter what I look like, how many nights I’ve spent awake resulting in huge black bags hanging under my eyes, I’ll never be 100% happy with myself! At my thinnest I continued to have them low days, that’s the problem, it’s a disorder, once you’ve lost them 5lbs you started off wanting to lose you go on to want to lose an additional 5lbs, then another and so on. I now try to see past my reflection! I know I have many good qualities… I’ve just got to love them that little bit more!

Post 12/30 in the wego health callenge #HAWMC

#HAWMC DAY 11 – My Blogs Crazy Theme Tune

11 Apr

So today I was told to imagine my health focus or blog was getting its own theme song, what would it be?

Apparently we all have one, the song that is top of our playlist, the one that makes us smile when we hear it. Or maybe it’s the song that we play when we’re angry or sad.

I thought long and hard about the question and suddenly it dawned on me… My theme tune has to be “Crazy” by Gnarls Barkley.

Yes, it’s one of my all time favourite songs and thinking about it I now know why this is!

You see, I mostly write about my life as a parent of a child on the autism spectrum which at times makes me feel like I’m somewhat crazy. I have also written a number of post about my own battles with mental health, OCD, depression, an eating disorder and that of anxiety (something that plays a huge part in Little Man’s life too).

I often find that the song “Crazy” is being blasted down my ear canal as I type a blog post, I guess I’ve never really stood back and seen just how much I relate to the lyrics and how the song applies to myself and that of my blog!

Here’s the lyrics…

I remember when, I remember, I remember when I lost my mind

There was something so pleasant about that place.

Even your emotions had an echo in so much space.

And when your out there without a care,

Yer I was out of touch,

but it wasn’t because I didn’t know enough I just knew to much.

Does that make me crazy?

Does that make me crazy?

Does that make me crazy?

Possibly

And I hope that you are having the time of your life, but think twice, that’s my only advice.

Come on now, who do you, who do you, who do you, who do you think you are,

Ha ha ha bless your soul,

you really think your in control…

Well, I think your crazy

I think your crazy

I think your crazy

Just like me….

My heroes had the heart to lose their lives out on a limb

And all I remember thinking, I want to be like them

Ever since I was little, ever since I was little it looked like fun

And it’s no coincidence I’ve come

And I can die when I’m done

Maybe I’m crazy

Maybe I’m crazy

Maybe I’m crazy

Probably

Uh, uh

Here’s a youtube video of the real thing… Enjoy you crazy readers!

Post 11/30 of the wego health #HAWMC

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