The Challenges That Come With Independence

So, its been a while since I blogged, all reasons beyond my control.
Well, Little man is officially a teenager now. On the 1st October he turned 13.
As a result his special school felt that he was ready to make a huge step forward into the world of independence.
Instead of of being collected by the school bus every morning he would walk to the train station through the park, take the 20 minute train ride followed by short 5 minute walk to school. Was I hesitant? Of course I was, what mother wouldn’t be? You see, little man had an intense ‘Special’ interest in trains that lasted many years. He was therefore very excited about this big new step he would be taking! Me I was worried sick that firstly we may find him over obsessing about transport once more. It may seem harmless to most but when a child with Aspergers is obsessive nothing else in the world matters.

This however was not my only concern! Little man is a child that struggles to sleep of a night time and if he had experienced one of he’s ‘All Nighters’ then how could I possibly let him ride the train to school? He could fall asleep and spend hours going back and forth to Hayes and Central London… What if he woke up in central london? At least if he was getting collected our morning battle would come to an end once I’d physically removed him from his bed and got him on the transport. But he hated everything about the new transport system, the one he had been placed on this September with little warning of any changes! Little man was used to taking a taxi with two other children and an escort which is provided for by the councils SEN team. This September no more than one day before the return to school he discovers that his escort has gone and will be replaced by another. He also discovers that there is no longer a taxi but a mini bus with a new driver and a heap more kids too. The battles to get him onto the bus were anything but easy! The last week before his independence training started someone from the SEN travel coordination team called me to say that little man was on his last warning! Apparently the new escort couldn’t handle the children, especially little man. I hear a fight broke out between my son and another boy. As a result the escort was pushed (not by little man but another child who as a result had been taken of the bus for good).

So, with this and little man’s pleas I decided that the transport plan drawn up by the school would probably be best at this current time.

To cut a long story short, since little mans been taking the train his had more days off than I care to remember! The first few days were fine. He loved the feeling of independence traveling to school gave him (he still does) however, his sleep pattern has once more gone up the wall and getting him out the door has been a fight that I’m losing. Even when he has left for school his been leaving late. With this and the constant warnings, Little man is on his very last chance and this time its with me!

I’ve made the decision to reintroduce the melatonin despite how its effects make him more drowsy during the school day. What else can I do? It gets to 4 am and I’m seriously at my wits end! Just the other night (well, I say ‘night’ but really mean early morning) I found myself screaming at him… “Why can’t you just go to sleep?” Only for him to look and me and reply “I want to but I can’t… I just cant.” its frustrating… Its frustrating for him, for me… And for the school, especially when they can see his a bright young boy with heaps of potential.

I find myself becoming so angry at life, for we go through these battles, get over them only for them to resurface months later. Its one hell of a rollercoaster, one I have no choice in riding.

Little man doesn’t tend to talk about thinks that may have upset or confused him during the school day, which sadly can lead to all sorts of difficulties, leaving me playing the private eye game. Switching of isn’t easy for most, especially when we have worries and troubles laying heavily on our minds. This for little man, a boy who has difficulties expressing them worries, a boy who already lacks precious sleeping hours, is a struggle on a level most would fail to reach. Its stuff as such as this that makes those morning and night battles that little more difficult than it currently is.

I do sometimes wonder how many other parents there are out there… Going through the same nightly and morning battles that we do. I know there are plenty but at times its a real lonely place.

Tips For Parents Of A Child Entering The Assessment Process.”

1) No child should receive an Aspergers diagnosis on a first appointment or assessment. That’s not to say it doesn’t happen. Yes, you maybe dead certain it’s Aspergers though professionals have a duty to explore every avenue and give your child a detailed assessment clearly observing them and then providing you the parent with a detailed document of his or her findings.

2) Be prepared, its likely (what with these awful cuts) that your child will not see the same psychologist more than once. You will feel that the continuous string of professionals are not making the assessment process any easier when you find yourselves being bombarded with the same questions over and over. ‘Yes we often ask ourselves… Do these people communicate with each other’

3) When assessing a school age child for Aspergers the team involved will usually request feedback from your child’s teaching team and school SENCO. Is your child’s school acknowledging your child’s condition? If not this can really slow the entire assessment process down. In the end the communication team at CAMHS had to go into my sons school to assess how he coped and acted in the school environment.

4) Remain on the ball. Often we are Frobed off by professionals with statements like they are awaiting a certain professional to get back to them or an appointment slot for your child to meet with the SALT therapist for an assessment. It’s at this times you often find yourselves dangling in thin air and before you even realise it its been months… Your slowly slipping through the net. Bombard the team working with your child with daily phone calls. Who cares if we are getting on their nerves? If we are silent we are forgotten and no one wants to be forgotten.

5) Keep all reports and assessment papers and letters filed within their own folder. This will help you to stay ontop of things. You will have dates at hand and be able to produce any needed documents at ease.

6) Keep your own written records. I’ve found that I’ve been told a lot of stuff of the record that could Potentially help my child but won’t in its undocumented state. I therefore make everything formal but taking notes at every meeting, during phone calls and any other time my child’s case is up for discussion.

7) Try not to miss important appointments as you will often find that its months before contact is even made and new appointments given.

8) Ask questions no matter how silly you think they may sound.

9) Trust Your Instincts. If you don’t agree with the professionals conclusions its your right to ask for a second opinion.

10) Its a long road, be prepared, don’t just go with it, be part of it! After all its your child and diagnosis could be a way to the services you require.

Sleeping Issues

Having a child with Aspergers can be difficult but having one that hardly sleeps is Incredibly trying.

For this reason little man’s school attendance is suffering and so am I… Big time!

Its one huge battle to get the boy to bed of a night and another to get him up. His like a monster in the mornings, swearing and throwing things about.

As his grown so has the problem. His now as tall as myself so grabbing the covers, carrying him out of bed and then physically dressing him is no longer an option! Well that is unless I want to live! Not only am I going to land myself back in court for little man’s shabby attendance I’m also struggling to get anything done during the day. Shopping is already a nightmare and I’ve given up on taking little man some time ago. This means just a quick trip to the shops has become some type of mission… One I’m not to keen on taking.

With this I have no choice but to visit the doctor and request a prescription of melatonin. Its not fantastic but given his had a good break from it, its effects will be beneficial over the next week or so at least.

So… If all the above wasn’t bad enough Little man is now spending his days bullying his younger brother rather than getting an education. Its not bully as such, its just his need for control and when his not at school or in bed catching up on the sleep his lost his doing exactly that… Trying to control everything everybody does. Its tiresome!

We are now in July and what happens in July? Little man starts preparing for his big day… Aka his birthday. Its three whole months away but that don’t make a difference… Not for the little man it doesn’t!

This year his talking computers… Macs to be precise. Yes, his not asking for anything cheap here and I think I preferred it when he was asking for them strange and wonderful items such as batteries and staple guns! There is one good thing to come out of the obsessive birthday chatter! If he wants something on such a grand scale his going to need to go to bed earlier and attend school everyday! After all he only has a week left till the holidays.

So… There you have it! Sorry its such a mini update but as you may have noticed, I don’t have so much time to get on and blog these days. Here’s hoping the next instalment is a little more upbeat.

Life In The Spectrum Bubble

Maybe you’ve noticed, maybe you haven’t, that this blogger hasn’t been the most active these past few weeks? I’m not being lazy, experiencing writers block or falling behind! No, I’ve simply been taking time out, working on other things!

As a parent, especially to one on the autism spectrum you sometimes feel as if your whole life is taken up with social skills training, advocating, battles and special interests. You find it difficult to shut off your mind, think about anything else, take real time for you, yourself as a person.

This isn’t a good thing, we all need to just be ourselves, doing some of the things we love from time to time. Its not that I don’t love parenting my son as I do his siblings, and it isn’t because I dislike blogging because, actually… I love it! I just needed a little me time.

Things at home haven’t been too eventful… If anything drama levels have remained reasonably low so I don’t have much in the way of news to report. Little man has been experiencing some sleepless nights (as usual). What’s worse is his been experiencing some awful toothache and this has affected him badly. He is very sensitive to this type of pain and is having difficulty coping with it. His senses are in overdrive, and with refusal to see the dentist I think we are both at our wits end.

I also got a letter from his school today threatening court action. Little man’s attendance is well below but when his refusing to sleep and then attacking me as I try to pull him from his bed of a morning it isn’t the easiest task to undertake. Its not that little man dislikes school because he actually quite likes it. However, changes such as new children in his cab, new teaching staff and friends leaving, makes little man want to shut the world out.

Between looking after little man and the toddler during the day, I’ve also been busy working on my own stuff. Myself and a friend have been doing some selling at bootfairs, vintage fairs and craft markets, selling mainly that of vintage items, jewellery and other lovely bits. I actually love doing this, especially during the warmer months. Not only does it raise some much needed funds but it gets me out doing something, meeting new people.

We have to remember that just because we are parents of children on the autism spectrum, it doesn’t mean we can’t have interests, time spent on other stuff! We should be able to do this without feeling guilty too.

I’m not denying that when your child is on the autism spectrum life becomes a bit more hectic, it does! However, you adjust and adapt, making routines and adjustments as best you can.

Its easy to find yourself stuck in the autism bubble, you’ve just got to pop it, remembering that before your child’s diagnosis you concentrated on other stuff! After all,its not healthy to do nothing but study the best therapies and educational resources all day long.

We are far better parents when we are more relaxed, free from stress and happy overall.

All my children need a sane mummy… And I’m just working hard to avoid myself becoming anything other than that! After all I’ve been there and it isn’t a pretty place!

The Children And Families Bill 2013 – Are You Worried?

Worried about the child and family bill 2013? Well, if your child has SEN or a disability then you should be!

This is a post I’ve needed to write since I first read the published Children and Families Bill 2013 but ended up having so many questions flying around in my own head that I couldn’t find a way to relax enough to put them in to words (well, words that made sense anyway).

I have now been given the opportunity to head up to Westminster on Monday, to meet with the Minster Ed Timpson where I will be able to put those questions and opinions forward! So…I thought it would be a good idea to share them here with you guys first and also see if you had any opinions to add.

If you remember the post I wrote last year relating to the Green Paper you will know that back then I had already developed grave concerns relating to the proposed reforms relating the that of Special educational Needs (SEN). Now reading the Children and Families Bill it is only fair to say that those initial concerns have now been greatly heightened and with good cause too.

1: One of my major concerns surrounded that of the removal of school action/action plus. The green paper offered little indication on what was therefore being implemented to make things easier for those children without Statements/Education Health Care Plans [EHCP] to obtain appropriate support and services. Looking at the bill it seems that as I feared, “Nothing” is actually being put in place that will truly benefit the child who doesn’t fit the criteria for SEN. The Department Of Education (DFE) has stated that these children will have some degree of support through that of the “Local Offer” Though it should be noted that the bill as written states that the Local Authority (LA) are required to make information available relating to the education, health and social care services it “expects” to be available within its local area! This seems to hold no legal duty and therefore leaves these children in a somewhat similar situation than the one they are already in.

2: The Bill states that it has expanded the list of schools parents can request as a preference when naming the school in their child’s EHCP. This maybe so, but the fact the LA can still claim that for the child to attend the parents preferred school would be an inefficient use of resources, therefore meaning they wont name that school, actually means parents are in no way a better position than the one they are currently facing now! Well, I fail to see the difference.

3: At the start of the process the green paper promised a much quicker assessment process, with timescales being greatly reduced and parents not having to battle their way through the SEN System. However, the Bill fails to reflect this and actually fails to make known any sort of timescales for assessments, reassessments or appeals whatsoever.

4: The suggested requirement for parents to meet with LA officials before an application is made to tribunal is just pointless. It was first suggested that Mediation would become compulsory, meaning parents needed to take this route before applications for appeals to the tribunal were omitted. However, it was later agreed that this type of requirement was somewhat unfair, one making little if no sense! But then the the bill has stated the possibility of a meeting to discuss possible mediation etc is to be held before submitting an appeal to the tribunal! Come on… This will again make an already long process longer. If parents thought they could just pop down the LA and sort the whole mess out over a cuppa then don’t you think they would? No mother likes to endure the whole stressful notion of having to battle the LA at the tribunal, don’t you think we’d avoid it if we could. Again the whole lacking of timescales contributes here greatly. Why shouldn’t appeals be submitted at the first instance of it being denied. Its already known that it is only then that most LAs will actually start putting things into action and communicating with parents.

5: Another huge concern for me is the lack of information given on how the integration of the new EHCP will affect those children who currently have statements of SEN? Given a great deal of the law and SEN code will need to be rewritten to fit in with the new sen reforms how is this going to work with the statement! After all, if statements are going to be replaced this cant possibly be done by the time the new laws come into practice! With many of the laws that relate to those statements being written off, where is the legal protection to ensure the provision is still provided to the child who obtains that statements? Will statements be gradually phased out, scrapped and reproduced as EHCP as a result of annual reviews? What about those who have had annual reviews shortly before the legislation is made official? Will they hold a statement that offers no protection for a year? What happens when they are older will they receive the same protection if they remain in education? How will these new changes incorporate the social care side of things? Will those who have SALT on part 3 of their statement find that it then becomes a requirement of the health care system, no longer the duty of the LA to provide? A health care system that has no legal duty to provide it?

Which brings me to my next concern…

6: The lack of duty with the health sector. As it stands most of the areas which the LEA consider to be non educational are tossed over to part 5 of a child’s statement! I don’t think anybody from the health sector currently ever sees that part of little man’s statement or that of any other childs! Why? because they have no duty to provide any advised provisions, thats why! So, I guess I should be excited about the LAs joint commissioning with the health sector. Sadly I’ve already lost faith in this proposal.

The fact is that the LA have a duty to provide educational provision and regardless of joint commissioning it will stay that way! So, them “non” educational support needs will fall in the hands of the health sector right? With the guys at the LA actively communicating with those in the health sector things will now be hunky dory, right? Don’t be fooled! Their will be no legal requirements made of the health sector so basically… Nothing’s changed! Its just like having the non educational aspects of a statement tossed in part 5. The only difference is the health sector will know they are there, but in no way does this mean they will have to provide such services! What with waiting lists for a basic blood test on the rise and government funding cuts that have already had detrimental impacts on the NHS and related services, it looks like even more children will be left without the support they need to succeed. Yes, they made it sound so promising when talking about it all in the green paper, but in reality, it isn’t really that pretty no matter how much you dress it up!

As mentioned Little man receives SALT and OT which the LA tried its best to toss into part 5 of his statement. It took two independent assessments and reports, a pending tribunal case (that luckily didn’t make it to the hearing) for the LEA to throw the towel in. Which brings me to the issue of legal aid, if this ends up restricted then I guess children all over England and Wales are gonna be in huge trouble.

7: My next point to make is that of the funding issue. Again the bill has been very careful not to give many clues on the budgeting side of things. Delegations of school’s budgets for those children just outside the SEN scoop have not been discussed, and very little information on the individual funding of a child’s EHCP has been offered. Ok, so we know about the idea of personal budgets, yet the finer details are still up in the air. However, at this early stage my concerns currently surround the area of passing money to families and letting them go about it themselves. Ok, this way we know what our children are getting and we can hopefully obtain the services needed to cater for our child’s needs, but isn’t this just another way of removing the responsibility and the workload from the LA. I want to know how they are going to monitor the situation to ensure that the provision on the EHCP is being implemented? Will the parents be required to document spending of the budget having to knock up an annual spending report for the LAs records? I don’t know about you guys but I’m to busy being a mother and an advocate for all that!

8: Is this just another way to lower spends? Honestly this is a serious question, one that deeply worries me! How can we as a country struggling against a Recession with cuts already hitting children’s services the hardest, have faith that our children’s needs will be met this way. The bill is missing huge chunks of legalities that although haven’t been great have all the same protected us somewhat, giving us a case to fright for our children. With the bill being very unclear when it comes to appeals, timescales and a duty to provide services who can blame me for thinking that this isn’t a way to slowly help refill the governments penny jar. After all legal expenses are just that expensive so by removing many of the legal rights associated with the statement, less appeals can be lodged and the expenses decrease… Sad but logical!

9: Has anyone else noticed that the idea of a key worker, a single person to point us parents in the right direction, has suddenly been dropped from the bill. I’ve read many of the governments responses to the concerns raised, though I failed to uncover concerns relating to a family key worker! I therefore wonder why it suddenly disappeared without trace, especially considering it was one specific aspect of the green paper most of us parents applauded? Too expensive an idea maybe?

10: The EHCP is for those with SEN between the ages of 0-25 years. However, what most people fail to realise is that this is not exactly true! Its pretty clear from reading the bill that once your child/young person leaves education then the plan will crease. This actually makes sense, after all the only aspect anyone really plans to fulfil is those provisions given in the EHCP is that of the educational part of the plan. As mentioned the area of health and social care will have no legalities attached meaning it won’t be worth the paper its written on. It will be this part that your child will probably need most when leaving education, yet it seems that more assessments from social services to obtain the help needed to help young people with the transition into adult life may well require that of you having to fight for it… Again!

Thanks for reading my thoughts and opinions on the Bill. I actually have some strong views on the sections covering adoption and children in care and have decided to express them in a separate post which I’ll try and publish sometime over the next couple of days.

Now I would love to pick my readers brains a little and ask… “What would be the most important aspects of the bill you would want to raise with the Minster?” Please it would be great to hear your thoughts.

To access the Children and Families Bill and associated documents, click HERE

Celebrating Mothers Day The Aspergers Way

Yesterday evening the little man asked me a question that was prompted by that of one of my own!

My question to him was… ‘Do you know what day it is tomorrow?’

His answer… ‘Um, yes… Its Sunday’

I then informed him that actually it was Mothering Sunday (aka Mother’s Day) to which he replied…

‘Oh, is it!’

Then came his question that actually really got me thinking for the duration of the evening!

‘Why?’ He asked!

Followed by…

‘What’s the point? Why do mothers need to have a special day? Why don’t we celebrate our son’s by having a. Son Day?’

‘Because mothers do lots for their children and its a day for their children to appreciate this’ I reminded him! To which his response was…

‘But you tell me I must appreciate you always’

Yes… I Give him that, he has a point!

Then he went on to ask…

‘Mum, honestly… Do you not see that its just a way for everyone to make money!’

You see, that’s the joys of having a child on the spectrum! Such logical little thinkers who don’t really dress anything up to make it sound pretty.

I was then informed that unless his dad had brought me a card then maybe I shouldn’t expect to much as I know how much he struggles with drawing and colouring.

He means no offence… honestly.His just saying it how it is! Actually I wouldn’t expect anything less!

Does it upset me that he fails to notice that his sister is busy in the next room preparing a work of art with glue and tissue paper? Does it make me sad that his all zoned out chatting to his online friends about the world of Mindcraft rather than showering his mother in Mother’s Day kisses? No! OK, may it used to a little, but it doesn’t anymore! Why? Because without sounding corny he is a gift in himself, all my children are.

Little man has been off school a couple of days this week with the flu and I normally find that school is the place that gives him those gentle little reminders when such occasions as these arise.

I remember when he was in primary school and every year when they made cards to mark the celebration of Mother’s Day, little man’s cards would always feature trains or buses, normally with a stick man and an arrow with the words ‘Me.. Driving the bus’ spilled out above it. I remember standing talking to a mother as we waited for our children to be released at the end of the school day. Her child came rushing out and almost forced a card into her hand. I can clearly remember the design, one that displayed an almost 3D image of pretty Daffodils. The centres of each flower made with sections of a painted egg cartons, petals made of yellow tissue paper and pipe cleaners proudly displayed as storks. Little man didn’t run out and hand me a card he was to much in a rush to get home to his sanctuary (aka bedroom). By now myself, this mother and our children were now walking side by side out of the school gates when she suddenly asked.. ‘Where is your card’ I was half convinced I didn’t have one but before I could say anything, little man had rooted around in his book bag and had now presented me with one! I smiled… that proud mummy smile as I looked a my card that of course displayed a somewhat different image from that of the other mothers card! Yes… A little stick man, only this time, that little stick man was driving a train as opposed to a bus.

“Does mummy drive trains” the mother asked my little man in her cheeky giggly tone.

Now I can’t quite remember his response, we are talking back when he was around 7 years old and still in the infants section of primary school. What I do remember was that his response was one of the “No Nonsense Type” as he rightfully pointed out that my hair was much longer than that of the hair on his stick man and the important factor that mum wouldn’t know if she liked driving trains as she has never driven one! Mum can’t even drive a car!

The mother smiled before she went on to wrongfully state that “Mothers” prefer flowers for Mother’s Day!

I was quick to correct her mistake when announcing that actually this “Mother” prefers trains!

You see little man wasn’t really one to pick up a pencil and start to draw unless prompted to do so. He struggled with his fine motor skills and even though he was yet to receive an official diagnosis of Aspergers, I’d always known that their was something stopping him from expressing himself on paper. So, the fact that he’d actually made this card for me and drawn it by himself was actually better than that of a hundred Daffodils made from egg cartons and tissue paper.

Every year up in till year 4 of his primary school years, he made me this card (always almost the same). Sadly once in year 4 things really started changing. It was this year major concerns began to arise. It was the year of illegal exclusions, disability discrimination and constant battles with both the school and LEA. My little man just stopped picking up a pencil/pen whatsoever. He wrote less then a sentence in a whole school year and carried on this way in till I removed him in year 5. It was only once he started with a one 2 one tutor instead of attending school (at this point no school were willing to take him) that slowly he began writing and drawing again.

I guess that my point is that each one of my three beautiful children all make me proud to be a mother. For us there is no traditional way to celebrate a Mothering Sunday… In our house we tend to do things the Aspergers way like we do almost any other day!

Happy Mothers Day. Xxx

Communicating Though Technology

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

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

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

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

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

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

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

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

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

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

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

ITS TIME THAT OFSTED PUT A STOP TO ILLEGAL EXCLUSIONS AGAINST CHILDREN WITH SPECIAL NEEDS

Yesterday was a rather productive day.

Its a day that two years ago, I longed to see.

Yesterday was all about reaching out, creating awareness and getting heard.

It was those important factors above, and a few more besides that encouraged me on the given tasks I had been set. Tasks I thought would never happen but was now about to suddenly surface.

The task was that of sharing our story with the world.

Two years ago I felt as if no one would listen. I was able to successfully bring every aspect of our story to light and people would take notice… Every aspect but this one! Now I’d been given an opportunity to change this.

It all began when the charity “Contact A Family” sent me an email with an attached survey surrounding the topic of “Illegal exclusions from school” Of course I had a lot to say on the given subject. I hoped that others affected would have too. The results could finally prove the extent of the problem and finally a campaign set in motion.

Thankfully this is what happened! The results have lead to the charity “Contact A Family” launching a national campaign highlighting the results of the survey entitled “Falling Through The Net”…

The charity’s Falling Through The Net survey, collected the opinions off over 400 families of children with disabilities or additional needs.

The results indicated that more than half (53%) of families have been asked to collect their child during the school day because there are not enough staff available to support them.

• More than half (56%) of families have• been told by the school that their child can’t take part in a class activity or trips because it is unsuitable for them.

• Almost a quarter (22%) are illegally excluded every week and 15% every day.

• More than half (53%) of affected disabled children are falling behind with school work and 43% feel depressed because of illegal exclusions.

• Half of parents (50%) are unable to work due to being called to school frequently.

The charity is making the following recommendations to improve the situation:

• Where exclusion is necessary, schools must follow statutory procedure to ensure decisions are lawful, reasonable and fair.

• The most frequently illegally excluded pupils with a disability or additional needs are those who have conditions which affect behaviour. Schools should take early action to tackle the underlying cause, and to put in support before a crisis occurs.

• Schools and teachers should work closely with parents to understand a child’s condition or disability and their extra support needs and ensure the child gets the help they need.

• Ofsted has an important role in identifying unlawful practice in the course of an inspection. School should be offered additional support to help them improve their practice. A grading of “inadequate” should be considered if schools continue to illegally exclude children with a disability, SEN or additional need.

Looking back through some of my blog post that I had written back when Little man was being regularly excluded from school (both officially and unofficially) I am reminded of the sheer frustration and anger this situation was causing for both myself and my child.

I’m reminded of them painful days full of tears and disbelief as we struggled to get of a never ending rollercoster of emotional terror.

My post remind me that I am in fact a much stronger person than I myself give credit too. Despite the forming of depression and a certain degree of hopelessness, I never once give up… even though I often found myself close to the edge I remained there by a thread… A very thin one.

It wasn’t just our family feeling the pressure, although at that specific moment in time I felt like the only one and that felling was a somewhat lonely one! There was many more like me and it was during those months that followed that I discovered many others like myself living in fear of the daily phone calls from their child’s school demanding they collect their child for whatever reason.

The Boy With Aspergers Facebook page which is an addition to this very blog has some 5,800 + members, many looking for the same answers, huge numbers struggling to work together with their child’s school in a productive manner. Instead these parents found themselves on our page asking the same question… “Are they allowed to continually request I collect my child from school and bring him home?”

Yes, they are…. But only if the statutory procedures are carried out by the school. Its when they fail to put these procedures into action to ensure such decisions are lawful, that they then become unlawful.

What happens to the schools who chose the latter? In most cases if not all… Nothing!

You see the Education Act states that it is a parents responsibility to ensure their child is educated once they have reached compulsory school age. If parents fail to ensure regular attendances AWOs (Attendance and Welfare Officers) likely step in and local authorities proceed to take parents to court if they fail to fulfil this parental requirement (for whatever reason). This can leave parents with a hefty fine to pay or even in some cases a prison sentence to serve. The thing is parents can be found guilty of an offence under section 441 or 441(a) regardless of the reasons behind the absences. Its simple if you are (a) the parent of the child and (b) they never attended school everyday regardless of the reasons, then that parent is automatically found guilty of 441 (the lesser charge of failing to secure school attendance) and will end up with a fine or find themselves on some type of parenting order. Its the law, plain and simple!

My point?

Your child’s school phones you up, sometimes on a daily basis and requests you collect your child as they are unable to contend with their challenging behaviour. You take your child home as the school requests you do, only the official routes are not put into motion… There is no exclusion letter setting out the reasons for your child’s exclusion. This therefore means that the local authority have not been notified and your child’s school have broken the law. Maybe you don’t know this at the time but when you eventually discover this to be the case you take action. Written complaints to governing bodies, LEA officials and ofsted! Yet nothing at all happens… Instead the school seem completely disregard it all and continue to operate in such a manner! How is this allowed to continue? If parents are taken to court and hit with hefty fines then why ain’t schools? After all laws are laws.

When I was called at the ridiculous hour of 8.30pm and asked that I keep my child away from school on the same day as a planned Ofsted visit I had finally been pushed enough. I took myself and child to the school and as he throw himself around the reception area in sheer anger and frustration I just stood demanding I speak with the visiting ofsted officer.

Next thing I knew she was stood behind me, placing her arm around my shoulder as she lead me to an empty class room for a chat. I remember it all becoming to much and I sat telling her through sobs and tears, the extent of the schools treatment towards myself and my child, paying particular attention to the ongoing illegal exclusions (including the one he was currently meant to be serving). I passed her evidence I’d collected, diary notes and some written thoughts from the little man himself. She agreed that the schools activity was illegal and promised to investigated. I tried making contact with the officer as the weeks turned to months but never had any luck. I was horrors with the schools final report and grade of a “Good” school. There was absolutely no mention on the subject. It even stated the schools understanding of children with SEN and certain disabilities. To say I was horrified is an understatement! I then lost every bit of faith I had left in a failing system.

Yesterday morning I gave a live radio interview to Paul Ross on the BBC LONDON 94.9 Breakfast show.

That same afternoon I found myself agreeing to a LIVE TV interview with SKY NEWS. Now I’ve done TV interviews before and have appeared on the news as well as sharing stories in national and local newspapers, but a LIVE interview was something new to me and admittedly as I stood waiting to enter the news room my stomach did an array of huge summersaults making me feel a tad sick!

I had to constantly remind myself of the pain we suffered… How awful life was for little man during those dark days attending mainstream school. I then collaborated a huge mass of messages in my mind, all surrounding the questions parents of excluded children would leave on our Facebook page messages I’d read on the Facebook page all searching for answers and support.

I just had to remember that by doing this I could help contribute somehow to making a difference for children like my little man and their family’s too! This combined with the great encouragement given to me from some great supportive people across social networks such as twitter and Facebook, was the virtual kick in the butt I needed to get in that news room and go for it.

Thankfully I was joined by Srabani Sen, Chief Executive of Contact a Family and the whole thing went pretty well.

So… Here’s hoping together we can bring much needed changes to the way schools deal with the challenging behaviour of children with additional needs.

Would be interested in hearing from others who like myself and many others have had fight this battle. If your interested in featuring in a post I’m planing on this subject please email me via the address on my contact page.

Links to media articles on this subject…

An article on the guardian blog from a teacher who says illegal exclusion needs to stop! Click Here

An Article in the guardian newspaper (I myself contributed too under a different name) plus it features the wonderful Mama Owl (aka Juile Sheppard) and her beautiful boy Logan. Click Here

Enable – The official Contact A Family Report featuring mine and little mans experiences Click Here

Contact A Family Article on their findings Click Here

I’m afraid I haven’t been given the permission to broadcast the Sky News Clip as yet. It was showed at 1:50pm on the 19th Feb 2013 live on Sky news (Sky and freeview). If you are a Sky account holder You maybe able to view this on Sky Go today if you would like to see it. I will share on the blog as soon as I have permission to realise the clip.

Tips – Parenting a Child With Olfactory Dysfunction (Hypersensitivity to Smell)

Children on the autism spectrum often have traits of SPD (sensory processing disorder) which could affect any one, if not all of their seven senses.

In my last blog post I gave some tips on parenting a child with Tactile Defensiveness (Hypersensitivity to touch) today I want to write about Olfactory Dysfunction (Hypersensitivity to smells).

Its important to note that not all children with sensory processing problems will be hypersensitive to sensory stimulus. Some children will experience under sensitivity (under responsive to certain sensory stimulus). Where others, like Little man, can experience both.

Yes, in some areas, our Little man is known as a Sensory Seeking” But though this is true we have found that he is more hypersensitive than under sensitive, especially when it comes down to tactile stimulus.

Although little man does have difficulties with all off his senses, olfactory (smell) fortunately, is one of the least challenging (well, compared to that of his tactile senses). Nonetheless, it does still make things difficult for him. Luckily, Little man is given Occupational therapy as part of his statement and as a result he is learning ways to deal with certain types of hypersensitivity. However, he hasn’t always undergone Occupational therapy and as a parent I’ve had to learn what his triggers are and how to avoid heightening them.

Tip: Change Washing Powders!

If you use a highly Fragrance washing powered, this could well be a tigger for your child’s meltdowns. Try using sensitive washing powders that are fragrance free. I found that the fairy washing powder works well for us.

Tip: Reduce The Amount Of Perfume You Wear When You Are With Your Child.

I used to wear a certain perfume that drove the Little man nuts. It actually gave him headaches so I didn’t have a choice but to stop wearing it in his company. The fact it wasn’t cheap and priced at the higher end of the market made no difference to little man. Seriously… It was, and still is my favourite scent ever! yet I can hardly ever wear it!

Tip: Experiment with foods

Your child may say he/she doesn’t like a certain type of food without even tasting it! Little man could so easy be put off something simply due to the way it smelt. Sometimes its better to use different cooking techniques as some ways of cooking certain foods let of less smells than others. We could never cook scrambled eggs with little man in the house. Even his sister or brother eating a bag of wootsits or other cheesy snack within distance of him would set him off.

I’ve found that certain brands of the same food are less fragrant than others. Sometimes its just better to avoid certain foods altogether, other times I cook them when little man is out of the house.

Tip: Natural Cleaning products

Not only is it cheaper to make your own cleaning products but for a parent who’s child is hypersensitive to certain smells, it can be a way of removing a meltdown trigger. Using lemons and vinegar mixed with borax and bicarbonate of soda makes a great solution to tackle household dirt and grime. Fresh lemons will provide a fresh scent throughout the home, that isn’t too over powering for your child.

Tip: A Good Sensory Diet

Use different scents together to create fun sensory play. A good idea is to gather certain objects together, make the child close their eyes and then guess what the item is your holding simply by smelling it. Of course there will be smells they are hypersensitive too but this way you won’t only discover which smells they cannot tolerate, but those they like too. This means you could then try introducing more of these scents into the home. Maybe you discover that they like the scent of strawberry! You could then replace air freshners with this scent. Plus, by playing such games regularly your child could adapt to certain smells, therefore reacting to them much less in the future. Make sensory games fun, offering certain rewards for correct guesses making children more inclined to want to play.

Tip: Good Social Skills Training

This may seem odd but in fact its very relevant. Children on the autism spectrum can be quite abrupt! They have this tendency to say what it is they are thinking out loud. This is regardless of whether its Inappropriate to do so or regardless of hurting someone’s feelings. Basically if they think you smell funny then nine out of ten times they are gonna inform you you of it, no matter who’s listening! It may be simply because a friend is wearing a perfume they don’t like or maybe the teacher has bad breath. Teaching a child when its OK to say things can help reduce social problems.

Little man got into really big trouble at mainstream school when he told the head teacher that his breath smelt like a dogs… so could he please not talk close to his face. The fact the whole school was gathered in the hall really didn’t help the situation whatsoever.

Social skills training is beneficial for the child on the autism spectrum for countless reasons… This is just one of them.

Big fat Yawns

Yes, I’m tired… I look like poo and feel like it too. The past few weeks have been anything but leisurable.

I’m laid here on the bed blogging from my mobile, I can’t even be bothered to turn the Mac on as that would require me to sit up and right now that feels like an impossible mission.

So… An update! Little man went back to school last week having been off for an entire week with a sickness bug and a very sore cold sore (when you have Aspergers and a string of sensory sensitivities a cold sore is highly unpleasant) whats more his sleeping pattern became highly erratic which affected us all as a family.

Now I’m used to little man not sleeping to the early hours but something had to give. Little man wasn’t sleeping throughout the night at all and come the beginning of this week there was no signs of this getting any better. Having spent another entire night awake Little man started to settle down and become sleepy at around 6am. I, however had other ideas and decided I couldn’t take another day nor night of it and instead of crawling to my bed like I so wanted too, I instead used what little energy I had left in me, keeping the little man awake.

He wasn’t impressed and bad tempered was an understatement but in order to get him so tired that he’d have no option but to sleep that night I had him feed and dressed ready for school at 8.30am… Despite an entire sleepless night.

Some may say I’m evil and I guess in a way, yes I am! Yet it worked. Ok , he didn’t have the best day at school and my guess is he didn’t feel none to lively, neither, but he got home, ate dinner with half closed eyes and fell crashing into his bed at a somewhat alarmingly early 6 PM… Something I thought I’d surly never see!

Still, this hasn’t erased all his problems when it comes to sleep, he still struggles greatly…. Nonetheless, what it has done is remind him of the pure yucky feeling that comes with a day at school when you haven’t rested your eyes or mind for over 24hrs… And no one actually wants to feel that poo do they?

With this his been more eager to try to sleep at a reasonable hour. Its not been a 100% success story but when one wants to rest their mind it does become that much easier. With this there has been a slight decrease in the nightly antics! These include… Acting out his favourite WWE superstar entrance scene, talking non stop WWE to ones self and that of his constant note jotting on ideas for Mindcraft builds at crazy O’clock! I think maybe his trying to have a catch up, I just wished my body clock would now jolt so I could join him and do the same.

So… Now I’m yawning big fat yawns. Looking at the mess around me (seriously, there’s a fair amount) I think to myself… “Sod It” and instead I’ll bid you all a good night (or should I say good morning)?