A Bright Star No Longer Hidden

The annual review, a time for meeting with your child’s teachers and discussing progress, struggles and ideas. A meeting centred around your child’s special educational needs and the statement they hold.

Last week it was that time, the time for the Little man’s second annual review since attending his special independent school specifically for children on the autism spectrum. Lately, Little man’s attendance has been a little off the wall! Despite his love for his new school he continues to struggle to sleep of a night, often getting just a few hours sleep or none whatsoever. As one can imagine, mornings are becoming one huge battle us! For this reason alone I expected to hear how my son was falling dangerously behind that of his peers, what with his last school (mainstream primary school) insisting he had a reading age of 7, reception age writing skills, poor understanding of science and history, plus 2 levels below in maths and more besides. He was 10 at the time and I protested that my son wasn’t this far behind, especially in maths. His bedroom wall looked like some kind of number puzzle where he would cover it in mathematical problem solving and coding to a complex level (one even I struggled to understand)!

You see it was my conclusion that he was much brighter than he let on, but wasn’t showing this due to his unhappiness while attending a school who seriously struggled to meet any of his needs, both educational and developmental. It was during this particular annual review meeting that I realised just how right I was back then.

Here it comes… A seriously proud mummy moment…

Little man is two levels above his expect national curriculum level in maths. He is in year 7 and currently has a level of a child in year 9 on his way to year 10.

His also above in PE, Reading and more besides. He science levels were that of his expected age. English as a whole is also what is expected which just goes to show that my boy and any other child on the spectrum has the ability to shine given they are in the right environment to do so.

He has a great new system in which he can remove himself from the classroom to shake of any problems and excess energy with a run around the playground. He only has the ability to use his “Get Out Of Glass Card” twice for each lesson and teachers have reported that sometimes he finishes class having not used one. This may seem like such a minor thing but to a mum like me its pure music to my ears.

He also has a great reward system and school are working hard to try and discourage his swearing. Despite episodes still happening on a daily basis the improvements are slowly taking place and little man’s learning a little self control.

Proud… Oh yes, seriously proud! When your so used to being told the negative when it comes to your child’s education, you forget what its like to hear anything positive. This was a great example of this, it was the proudest I’d felt for a long time. I just wanted to shout about it from the roof tops.

Was I tempted to take a little walk through them office doors of his once mainstream school, the one in which his younger sister attends? Did I feel to wave his report in the air while shouting “Yer… Get a load of that! Thats my boy they are writing about!” Um maybe I did, just a little…I can’t lie. However, I don’t care what was once said! All that matters is that I have always believed in him even if those others who should have, instead made it their mission to write him off as a lost cause!

Well… Eat My Shorts!

My boys a star, a star that shines bright because his no longer hidden.

So, if you have a bright star that is currently struggling to be seen through the clouds then don’t give up on them! Believing is the key to your child’s educational success and as long as you believe others will follow. Never give up, fight for them to be seen as the star you know them to be.

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.

Look How Happy He Is Now!

I never thought I’d see the day my son smiled like this… His at school, has a great role in the secondary years Christmas production and I’ve never felt so proud.

When your child is never ALLOWED to take part in the schools yearly Christmas nativity or play it tends to become somewhat disheartening. In mainstream he was either told he wasn’t allowed to be part of it all, coincidently excluded from school that day or just pulled out and told he couldn’t take part at the final rehearsals or worse on the day itself.

Some parents feel a Little disheartened for their child when they Become upset at having to preform as a star, Camel, or even tree year after year. Us… We would have been happy with just that.

Seeing him up there on the stage, contributing, being a part of it all, was amazing. Did I cry? What do you think?

He has been in his Independent special school For around 18 months now. I remember he’s harvest festival assembly Back when he first started. She was excited about doing a reading but he wasn’t used to this type of thing, given he had never been given the opportunity in the past, The poor boy just froze with stage fright.

Now look him up there, With his mass of red hair and great big smile Ironically playing the gingerbread man. He couldn’t have been happier And honestly neither could I!

It was a wonderful day that had followed a school Christmas dinner the day before. This gave me two opportunities to witness my sons happiness within his new school environment.

It feels somewhat weird Being involved in the school community. Watching your son perform in the school play and eating Christmas dinner side by side with fellow parents and your child’s teaching team. Let’s not forget my experiences of school especially when associated with my son, were anything other then awful.

Looking back to how things were, the discrimination, tears and even self harm. I would have never imagined us being here.Things were horrible and I couldn’t see the light past the darkness. We are the perfect example of hope for any parent with a child on the autism spectrum facing the same trying battle when it comes to their child’s educational environment.

There is hope… No matter how dark things may seem right now. Good, understanding schools do truly exist so please don’t give up the fight!

Big thank you to my sons school for a wonderfully festive few days and for giving my son the opportunities he deserves as a 12 year old boy.

An Overflow In Hormones

Sometimes in life we feel we do our best yet our best is never good enough.

Little man is having a real time of it lately. Since his been in his independent special school for children with autism and Aspergers, I have had hardly any calls or emails reporting problems. However, I wish I could say the same for last week.

Little man wasn’t able to go swimming this week so, he helped out at the poolside. I can’t blame his school. They do everything in their power to ensure no child is left behind, and believe me sometimes I’ve found myself surprised that little man hasn’t been sent home for something or another. Last week I think he just pushed them to far.

Thankfully it was taken into account the fact his sleep pattern has been simply hectic. What with us stopping the slow releasing melatonin his been a little sleepless and off the wall.

So… Just what has he been up too you may ask? Well, his been argumentative with staff and actually caused the school bus to stop in its tracks on the way to swimming. Again he was acting a bit of a class clown.

If this wasn’t enough already, little man is also being somewhat inappropriate when it comes to the subject of sex.

He started to ask questions relatively early on. Well, his last year of primary school that is. But now its kinda gone to overload and his constantly wanting to raise the subject. This is fine, completely normal I guess. He is a boy of 12 years old in his first year of secondary school. Nonetheless, little man hasn’t got the required social skills mastered as yet, so, when it comes to dealing with this subject in the most appropriate of ways he struggles. This means he tends to say things that are not really acceptable, he also thought he would announce to the class that he enjoyed watching a bit of naughty TV on his computer when we are all sleeping at night.

Now, when they say children with Asperger’s syndrome do not lie, then please remember… This is absolute pony! Yes, little man is too honest at times, he doesn’t lie very well at all and if directly asked something truth comes before lie. However, he has the natural ability to make stuff up and this was very much the case on this occasion! You may ask how I know? Simple… We have content lock so this isn’t possible. I’ve also been removing the playstation from the bedroom at bedtime. I once woke up to him playing wrestling in the small hours and have removed it ever since.

We have had a long chat about telling stories that have hold no truth. I tried to explain that this type of thing can easily land parents in trouble when children state concerning issues. We are most lucky that his school really understand both his condition and him as a child. If he started making claims like this in mainstream… This would have lead to the AWO to come knocking on our door… No question!

Little man hasn’t been in trouble for this… After all his just a young boy with a sudden overflow in hormones and an over curious mind. I’ve emailed the school about my concerns, mainly that I don’t feel confident when explaining things to him as he seems to either act quite silly or ask questions I just don’t feel I cant answer. With this the school have stated that when they return in the new year, sex education will be a new edition to the timetable.

Somehow I’m guessing (if not hoping a little) that discovering the ins and outs of sex will have him running back to his Lego and computer games in seconds with no further interest for the next 10 years or so… Lol!

Being a kid growing up in this world is scary, but for a child on the spectrum its that bit scarier. Little man is just curious to discover everything the world offers… Including sex.

As for us mothers… Well, it makes us feel older than we actually are… Much, much older. A sudden increase in worry lines are almost certain and I’ve noticed what looks like a train track running along my forehead! Lets just not mention the black eye bags… Seriously, don’t even go there!

Why your child with Aspergers Syndrome May need an OT Assessment

Does your child with Aspergers Syndrome have difficulties with their fine and gross motor skills as well as that of their sensory processing.

If the answer is yes, you should consider getting an assessment from an occupational therapist (OT).

In Little mans case, this was highly recommended by an independent educational psychologist during an assessment in preparation for our pending tribunal hearing early last year. I’d always had concerns regarding some of his motor skills especially that of fine motor skills, handwriting mainly. I guess i wasn’t fully prepared for the final report, which admittedly came as somewhat of a shock!

However, knowing the true extent of these difficulties has allowed me understand why little man struggles within certain areas, plus since getting the statement amended he now has regular OT sessions within his special school.

The final report which was written by an independent OT based in Harley street London was a real eye opener, not only highlighting his motor difficulties but that of his poor sensory processing too.

It’s extremely important to think along the lines of OT when applying for a statuary assessment and beginning the process of requesting a statement of SEN. Once you have that statement and it’s all agreed, it will be a good year before the annual review, your next opportunity to request amendments!

Below I’m sharing some of the findings from Little mans OT report.

The report is sadly far to large to include everything so I’ve chosen some important factors that may affect others like little man.

Many see Aspergers as just a social communication and behavioural condition. This is simply not always the case!

Note I have Removed my sons real name and replaced this with the name you all know… Little man.

Behaviour during Testing
Little Man presented as a friendly young boy and was generally co-operative whilst completing table top activities during the first half of the assessment was and able to complete the assessment tasks with prompting and encouragement. However, Little man found the gross motor tasks during the second part of the assessment more challenging and needed constant prompting to complete the assessment.

Strength
Little man showed some difficulty with completing the given tasks of maintaining postures against gravity and practicing push-ups and sit ups. While practicing push-ups, shoulder abduction and pelvic tilt were noticed. It has to be noted that such activities apart from the strength, require a good level of motor planning sequencing of movements, and overall body awareness. Little man’s performance points to a mild difficulty in this area that is related to sensory input processing from joints and muscles.

Running Speed and Agility
Little Man scored below the average expected for his age group when tested on the subtest for Running Speed and Agility, showing some difficulty in this area. Items included a shuttle run and hopping activities. Little man managed appropriately with the shuttle run but showed some difficulty with hopping on one leg whilst stationary. He also struggled with items such as stepping sideways over a balance beam, and doing a two-legged side hop, which requires a high level of motor planning.

Results following a number of different tests

Little man presents with difficulty coordinating complex motor movements and higher level motor planning due to reduced vestibular-proprioceptive processing. These systems work closely together to give us a sense of where we are in space and of how our body works (strength, muscles, balance). He does not always rely on autonomic control and this means it will take him longer to complete tasks and need additional time to acquire new skills. His movements are not always refined and timed.This will directly impact upon his ability to produce handwriting at an age appropriate speed and develop more complex gross and fine motor skills that involve higher level motor planning and overall body configuration.

HANDWRITING

Little man held the pencil in his right hand with his thumb overlapping his index finger. He applied increased grip and writing pressure. He needed prompting to use his left hand as a stabilizer whilst writing. Little man sat on the edge of his seat with his trunk in flexion, leaning forward a lot.
Little man presented with some difficulty with handwriting, in particular letter formation and the spacing of his letters. His handwriting speed was also slow and appeared laborious. His increased writing pressure, poor knowledge of mechanical elements of handwriting and decreased planning suggests Little man must work extra hard to complete handwriting tasks, which involve fine motor control. It also indicates difficulties with sequencing and planning.This will impact significantly on Little man’s ability to complete written work in an expected time frame and to complete written tests on time.

Results of Little Mans sensory profile indicated difficulties with sensory processing and sensory modulation.
In addition the factor summary of the questionnaire indicated that Little man shows a Definite Difference with sensory seeking, emotional reactivity, low endurance/tone, oral sensitivity, inattention/distractibility, poor registration and sensory sensitivity.

Sensory Processing
Sensory processing refers to how we process sensory information from our environment and our bodies. We receive information from the following senses: touch (tactile); hearing (auditory); taste (gustatory); smell (olfactory); sight (visual); proprioception and vestibular. Little man has difficulty with sensory processing in all the above areas.

The auditory processing differences for Little man are apparent in the fact that he is distracted or has trouble functioning if there is a lot of noise around. It is reported that Little man appears to not hear what people say at times and that he enjoys strange noises.

The visual processing differences for Little man are apparent in the fact that he occasionally expresses discomfort with or avoids bright lights and becomes frustrated when trying to find objects in competing backgrounds. It is reported that he frequently has a hard time finding objects in competing backgrounds.

The vestibular sense allows a person to sense body movement, direction, and acceleration, and to attain and maintain postural equilibrium and balance. This then impacts on all areas of the person’s development and in particular, motor-co ordination. Little man’s difficulties in this area of processing are apparent in that he constantly seeks movement to the point where this interferes with his daily routine. It is reported that he spins or twirls himself occasionally throughout the day.

The touch processing differences for Little man are apparent in that he is sensitive to certain fabrics. It is reported that he expresses distress during grooming. Little man also has difficulty with standing in line or standing close to other people.

The multisensory processing differences for Little man are apparent in that he has difficulty paying attention and looks away from tasks to notice all actions in the room.

The oral sensory processing differences for Little man are apparent and that he will only eat certain tastes and prefers sweet food. It is reported that he is a picky eater and that he craves certain foods such as sugar drinks and coffee.

Sensory Modulation
Modulation is the ability to regulate/maintain arousal so that you can orient, focus attention on meaningful sensory events, and maintain an alert but relaxed state. It is this optimum level of arousal which allows us to function meaningfully within our environment. Some people have difficulty modulating sensory information. This can result in being over or under stimulated. We all have thresholds that need to be met by incoming sensory input. Without adequate sensory input we are unable to maintain an organised calm state. If an individual’s thresholds are too high they will need more intense input to meet their needs. If their thresholds are too low they will be easily overwhelmed. Little man is easily overwhelmed and becomes emotionally over reactive. It is reported that he easily becomes distressed at home and school when he finds situations difficult and overwhelming.

Conclusion
These clinical observations as well as the standardised assessments indicate that reduced sensory processing and modulation, and low muscle tone may be impacting on Little man’s ability to perform gross and fine motor tasks successfully.

Vestibular processing is our sense of movement and is closely related to the proprioceptive system. It tells us what direction we are moving, where we are in space and what speed we are moving at. Vestibular input can help to organise and refocus the body. Little man has some difficulty with registering and processing vestibular information, which is impacting on his co-ordination skills and ability to sit still for extended periods of time.

Proprioception is the understanding of where our limbs are in relation to ourselves. This information is provided by the stimulation of receptors in our muscles and joints. Proprioceptive feedback informs us where our arms and legs are without looking (e.g. being able to unfasten an apron that ties at the back).

When our proprioceptive sense works well, we make continual and automatic adjustments in our position. This sense helps us to stay in an optimal position in a chair; to hold utensils such as a pencil or fork in the right way; to judge how to manoeuvre through space so that we do not bump into things; to know how far to stand away from people so we are not too close or too far; to plan how much pressure to exert so we do not break a pencil lead or a toy; and to change actions that we are not successful with, such as the throwing of a ball that was off target.

Since proprioception helps us with such basic functions, difficulties in this system can cause many challenges for a child. Little man has difficulty with this and this is impacting on gross motor and fine motor tasks in all areas of daily living such as school work and play.

Low muscle tone relates to the tension of the muscles. A certain amount of tension is required to maintain positions and to allow co-ordinated controlled movements. For some children, the level of tension in the muscles is lower than other children of the same age, and so they require more effort to maintain the same positions/postures. Little man’s low muscle tone means that he would find it difficult to maintain a good seated posture for lengthy periods in the classroom setting.

The Panic Attack

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.

Joining Forces

Image via Wikipedia

A boy with Aspergers, When I was a kid & John Crane are joining forces 

 I know that the blog has been showcasing some toys recently as part of the ‘Santa’s Little helpers feature’ however I’ve also made a very exciting agreement with ‘Paul’ the daddy & owner of the independent toy store ‘When I was a Kid‘ alongside the people at ‘John Crane’. 

 So, what’s so exciting about this you may ask? Well, a while back I was sent a huge (I mean Huge) John Crane catalogue that contained each and every one of their products. The Idea was for me to choose six items and then give some feed back on them. Why? Because Paul (When I was a kid) & John Crane, generally want to make their toys more autism friendly.

How great is that!

 I felt privileged that Paul came to me with his ideas and given this is a project that will benefit children like my own I wanted to get involved. 

 You see, most of us don’t actually want a special range of toys designed especially for children on the spectrum! We are forever heard saying that we don’t want our children excluded from daily activities, we state that our children should be allowed to play freely amongst their peers. We don’t want them being pushed together playing with their “specialist designed toys” 

Don’t get me wrong people, my son goes to a ‘Special school’ so plays amongst his peers on the spectrum daily, It’s not about that, It’s about making toys appealing to all.

 What we do want is for more toy brands to be aware of children with special needs whether its autism or something else all together. We want them to consider children as a whole when designing their toys. Ok, Yes, their will be toys, aimed at different interest, ages and abilities but shouldn’t brands be thinking of the benefits each toy makes to the non “Typical” child too?

 The reason I started doing the ‘Santa’s Little helpers’ feature was mostly down to the number of visitors who found my blog as a result of googling terms such as, “Toys for children with autism” or “What toys may be suitable for children with autism at Christmas” etc, etc…

 Like all children, those on the autism spectrum all have different interest and abilities and I’m not stating that one toy that is beneficial for one child with autism is beneficial for all. I’m simply stating that certain toys have that edge to them, whether it’s educational, sensory, visual and so forth. When you get one or even better, a number of these things combined you often find that the toy at hand is actually more beneficial to the child with autism than some may think.

 I do hope that what I’m about to write, isn’t taken in the wrong way!

There are to many toy companies out there who take a toy slightly adapt it and label it as a “specialist” toy! This type of toy can be found in specialist shops, may it be those aimed at the sensory side of things or Occupational side. The thing is with this toy being given the label “Specialist” it then tends to score in price! Why should it be a way to make additional pounds?

Now not all specialist toy companies do this but so many do!

Now when you get a toy with developmental benefits that states its good for all children including those with autism, doesn’t brand itself as specialist, therefore containing the same price tag as it would for a similar toy in its range that doesn’t make the above claim, then isn’t this fairer? I think so!

 That’s why when we review toys on, ‘A boy with Aspergers’ we try to look at the benefits for all children and If I feel the toy in question would also suit the child with autism or special needs, then you will happily hear me state it (Well, in most cases write it). Maybe that’s why you find toys from your everyday brands here on the blog. I hardly ever review the toys branded “Specialist” There are a great section out there, yet the price attached to many are enough to give a reader a heart attack. I have visited sites that state that they sell specialist toys for children with disabilities, I have seen some of the prices, I’ve then gone to an everyday well-known retailer and seen similar or the same toy for less. Yet many parents buy the first toy! Why? Because they think it’s the right thing to do!

 Both ‘When I was a kid’ & ‘John Crane’ already have shelves stacked with toys that offer great benefits to a child with autism & special needs. I want to help them uncover them and then share them with you guys!

 I saw some toys in that catalogue that got me very excited (I’m a big kid at heart). Many were great in their current form, others would be extremely beneficial to all if adapted slightly. 

 So, yes I’m really overjoyed to have a part in this and am looking forward to working with these guys.

 What you can expect over the Coming months

 A number of toy reviews that will be extremely detailed in order to show you the benefits of a toy for both the child with autism and other special needs as well as the child without. 

 A specially designed page both here and on the ‘When I was a kid’ website, showcasing the toy reviews and other beneficial features

 Guest post by me on both the ‘John crane’ & ‘When I was a kid’ site.

 This is more than a toy review. All toys featured will be sent to customers with an attached note detailing some of its benefits while letting you know we recommend it! 

So, next time you google that question, “What can I buy my child with autism as a gift?”  My guess is… you’ll now get your answers and for me that’s pretty awesome. 

Check out the ‘John Crane’ blog  by clicking HERE OR Check out the ‘When I was a kid’ blog by clicking HERE 

Related articles

• Who’s at Risk for Autism? (everydayhealth.com)

Special Educational Needs-Getting Started With Statements

 I remember all to well what its like to come up against the system when you haven’t even got the slightest clue what the words “Statement” and “SEN” mean.

 I had to wise up fast, and I did! I learnt everything that needed to be learnt, because I knew I needed to for my child to get where he is now.

 Once I had wised up, I stated advising parents on their tribunal rights on a voluntary basis which is extremely rewarding. Yes, it was hard to learn education law as it applies to special educational needs but its given me great satisfaction.

 This is why I was keen to read the new parent to parent hand book,

 “Special Educational Needs, Getting Started with Statements” By, ‘Tania Tirraoro’ a mother to two autistic boys from Farnham Surrey.

 Tania’s aim is to help other parents navigate their way through the educational needs jungle.

 I’ve been a follower of Tania’s for the past 2-3 years, as like myself she writes her own blog and started around the same time as myself back in 2008. Some of you may all ready know of Tania’s work from her site “Special educational needs jungle” which I have always found to be a valuably resource for parents whom have children that are not only on the autism spectrum, but those of children with special educational needs (SEN) .

 Tania’s book is availably as an Ebook as well as a published paperback.

 THE MAIN STRUCTURE OF THE BOOK

What’s particularly difficult when trying to explain the statementing process to another in way of written content, is the need to keep it simple (well, as simple as it can be when advising on a complex process such as SEN). Its my opinion that Tania has done this extremely well! She has broken up the procedure into sections and remained on topic within each area. I feel that many books and sites that are explaining the statementing procedure tend to wonder off course, making the reader quite confused.

 The forward within the book is by Maria Hutching’s SEN Campaigner and former parliamentary candidate who hand bagged Tony Blair during the 2005 election over the closure of special schools.

 Maria states how she only wished she had a book like this one when fighting for her own children’s education.

 This is followed by an introduction and then a description on what “Statementing” actually is. Parents who are new to the statementing process, should read this chapter in order to fully understand the book further. Tania has done a great job explaining what a statement is and why your child may require one! Readers are then introduced to some resources such as the ‘SEN Code of practice’ and the Education act, before reading a detailed chapter headed “Getting Prepared”

 The book then explains the who procedure in detail from start to finish, supplying real example from successful applications with the injection of relevant quotes from the ‘SEN Code Of Practice’ (Cop)

 Tania really does cover every step in great detail and is sure to warn parents that they shouldn’t expect an easy ride. Regardless of this fact, Tania is always sure to follow up on a positive, the book is extremely motivating, empowering parents to go with their instincts and not give up. The fact that the writer has been through the process and came out the other-side having got what her boys need to succeed in education, is truly uplifting and inspiring for the reader. I feel the use of material from successful applications was also extremely beneficial as well as uplifting and helpful. There was some great common examples were a case seemed a little doomed, yet succeeded. This shows parents that although the LEA do have these big fancy solicitors, that sadly most cant afford, they can still do it, on their own.

 This is very true as nobody knows our child better then us, the parent! I like the very honest and direct approach Tania has provide, there is no sugar coating, she doesn’t state it’s a walk in the park, which helps the parent/reader become fully prepared for what may lay ahead!

It is my belief that this is what parents need, the whole package, of what can happen, the good but also the not so good.

 Other helpful subjects Tania covered was of course the

I liked that Tania went a little deeper by covering the issue of relationships (between parents and school/sencos [special educational needs co-ordinator]) She explains why the break down of these relationships can  make it that bit more difficult when going through the process.

 One of the most impressive sections of the book for me, had to be the statementing checklist, that has made some excellent points. Like Tania states many parents feel their child’s needs are evident! This simply isn’t the case and parent needs to know this. I feel it is very common for a parent to assume that a diagnosis will automatically entitle their child to everything else. Parents are often shocked when they discover this isn’t the way in which it works.

 Tania covers everything from the writing of the application for statutory assessment; the refusal of that application; the application to appeal; the agreement to assess, the stages of the assessment and time-scales; the proposed statement; time scales; parental response and request for the school named in part 4, plus more.

WHAT’S DIFFERENT ABOUT THIS BOOK FROM ALL THE OTHERS

 I have read many books that are written by mothers of a child on the autism spectrum, however, most are personal stories that are not told in a way that offers advice and guidelines, it’s more like a life story you can relate to.

 The book,  “Special Educational Needs, Getting Started with Statements” still has that personal feel, after all it’s written by a mother of two son’s with autism who has fought the same system! Nonetheless its also a very well written resource and guideline for parents facing the same battles.

 What’s nice is the fact that Tania is providing a much needed service for fellow parents and is doing so as a parent and not a professional. This is something most parents of children with SEN prefer, advice from a parent not a professional. Sadly it gets to the stage when you feel fellow parents are the only valid source of information when you are going through such a process and battling against your very powerful Local Education Authority.

 What I found very appealing throughout the book, was Tania’s words of motivation, and having gone through the process myself, can verify that at this stressful time encouraging words are most welcome, you cling to any positiveness with both hands right till the very end.

 Tania has done very well to draw attention to some very interesting and important points, such as, “How a child’s social & emotional needs must be taken into consideration when requesting a statutory assessment” I myself hear all to often on my facebook page, many mothers stating, “They told me I can’t apply for a statement, as my son is too bright” (Ok, so it doesn’t matter that his social communication is so poor it makes them depressed, or the child can’t  cope at break-time etc., etc….) Tania very clearly wipes out these myths making the statementing criteria easy to understand.

WAS THERE ANYTHING MISSING

 I wouldn’t say that their wasn’t anything missing, however I would state that it would have been a nice touch to have added a little jargon buster (explanation of some of the terms used) Even though Tania has been excellent at keeping Jargon to a minimum, not all can be avoided, a little list would have just been nice, through not essential.

 From a parent who has embanked on such a journey, with that added pressure to secure an independent special school, who has succeed in both, I think the book is a spectacular resource that will benefit many parents and carers who are desperately trying to secure a statement of SEN for their child.

I highly recommend this book for those who have children going through the ‘Statementing Process’

If that’s you then fly over to Amazon and get yourself a copy either in the format of an Ebook or the traditional paperback

Click HERE

DO YOU WANT TO WIN A PAPERBACK COPY OF THE FABULOUS

“SPECIAL EDUCATIONAL NEEDS-GETTING STARTED WITH STATEMENTS” ? 

Then enter our super comp

ALL YOU HAVE TO DO IS POP RIGHT OVER TO TANIA’S FACEBOOK PAGE, GIVE IT A LIKE AND TELL HER

“A BOY WITH ASPERGER’S SENT YOU TO SAY HELLO”

THEN LEAVE A COMMENT INFORMING ME YOU HAVE DONE!

(NOTE THE ABOVE IS A COMPLUSORY ACTION)

ADDITIONAL ENTRIES

(1) LIKE THE BOY WITH ASPERGER’S FACEBOOK PAGE. LEAVE ADDITIONAL COMMENT TO VALIDATE. 

(2) FOLLOW ME ON TWITTER (LINK IN SIDEBAR) LEAVE AN ADDITIONAL COMMENT TO VALIDATE.

(3 )TWEET THE COMPETITION USING THE TWITTER SHARE BUTTON. LEAVE AN ADDITIONAL COMMENT TO VALIDATE.

(4) SHARE ON FACEBOOK USING THE FB SHARE BUTTON. LEAVE AN ADDITIONAL COMMENT TO VALIDATE.

PLEASE LEAVE A TWITTER ID OR EMAIL ADDRESS SO PRIZE CAN BE SENT IN THE EVENT THAT YOU WIN.

Competition is for UK residents only! The competition willclose at Mid-night on the 30th November 2011

Winners will have 48hrs in which to respond, failure to do so may result in a redraw. You’re mailing address will be sent to the brands PR team who will then send our the prize for the lucky winner. All participants must have a valid email left with their comment.

Monkey So, Monkey Do

Ever heard of Lisa Edge? 

Well, if you haven’t you will soon!

 Lisa creates divine quilts, and accessories out of beautiful fabrics. She’s known for her gorgeous patchwork quilts that are all handmade and totally stunning. 

 She sells via an online store, but seems to add most of her products to her facebook page which is like an Aladdin’s cave of gems.

 Lisa creates these unique & beautiful pieces as part of her business Monkey Sew, Monkey Do.

 I was thrilled when Lisa asked if she could send Little Harley a bandana bib to review.

 We really were not disappointed, the black and grey pirate design was absolutely fab, a real tread-setter. 

 At first, little H looked at me as if to say,

 “No, way baby you’re not putting that think on me mamma” 

 I did the mummy blackmail, lowered my bottom lip and looked sad, to which he responded with an, “OK, mummy” (His new favourite words)

 Harley will not wear your every day standard bibs, he’ll pull at them almost taking his head off! 

Bandana bibs are smaller than your average bib, they suit a toddler so much better than the conventional bib, that can look a little odd as your baby gets over the one year milestone.

 These also work well to keep the neck warm making an ace replacement for a scarf. The fleece lining is really warm and also comfortable around the neck, no itchy wool, they are really tactile friendly.

 Once the bandana was on, Harley quickly forgot about it, which I think was down to the lovely fabric. It’s great for little dribblers and those that get a little mucky when eating out and about. 

 Lisa, is clearly very good at what she does, not only did she send me a beautiful well made product to try, but she also gave me excellent customer service via email, and made the delivery of the parcel that bit more personal, by adding a hand written note thanking me for trying the Bandana, and a few little care tips (how to wash etc.) as well as one of her pretty little business cards.

 If bandana bibs are not really for you, don’t write her off just yet! Lisa is a dab hand at all sorts and can do so much more than bandanas and quilts. Other beautiful handmade products include, pretty cushions, including awesome kids designs and personalised items.

 Little man (my eldest son who has a diagnosis of aspergers) would never wear bibs, which I now think was a sensory related issue! Maybe if Bandana bibs were around then (his almost 11 now) these may well have suited him better. He doesn’t really like stuff around his neck but the fleece material may well have been tolerated. 

 All in all, we were totally impressed with the bandana bib we were sent, the design was spot on and was a welcome change from teddy bears and sailing boats (which you often find on baby and toddler garments). The material was lovely and the product was really well made. 

  Myself and the little guy, highly recommend you check out Lisa’s designs over on the monkey Sew Monkey Do facebook page.