Thursday, December 10, 2015

An unexpected EHCP emergency review


Just as we were starting to feel hopeful about finding our way as a family, and getting the support from a school who understood our Son's needs more than we could possibly hope for, we are faced with the words that we had prayed we wouldn't need to hear again ....


We are unable to support your son's needs, and are requesting that he be found a different school setting as he is at risk of permanent exclusion

So after just 61 school days in his new school we are now faced with an emergency review of his EHCP, and the very real possibility that he will have to change schools again.

The tidal way of emotion since finding out the purpose of the meeting called by the school has hit me hard, as I am faced with trying to ensure the best possible outcome for my Son in a situation where I have very few insights on what is best for him.

Sunday, October 18, 2015

What I learnt applying for an EHCP

Thursday, October 01, 2015

Finding hope in a new school



We have started in a new school and are hopeful that our struggles are behind us. 

The Deputy Head and school teacher came to meet my Son to see if they felt that they would be an appropriate setting to support his needs, and seemed so supportive of trying to help. I didn't know how to react when they told them that they would do everything they could, so I smiled, closed the door and burst into tears.

We will do everything we can to help your son
--Deputy Head of our new school 


At last there was someone with a kind word, an offer of help and some assurances that we are not facing this on our own. We have now started at the school, and I truly hope they mean those words as it has not been an easy start.

Saturday, September 05, 2015

Why the right school is so important to us





So the first day of school has come and gone - and we are still at home waiting for a decision on where my Son should be schooled.

We have an appointment on Monday with an ARP (Additionally Resourced Provision) who is considering taking my Son - not sure what is due to happen or long it will take for a decision, but we hope that it will be sorted out next week.

For us finding the right school is about so much more than his education.

Wednesday, September 02, 2015

Granted an EHCP, only to question the stated provisions

ehcp without a school

We have an EHCP! Unfortunately we don't have a school.

As everyone excitedly gets ready for a new year at school, we find ourselves unsure of where to send our son as we wait for a decision to be made on the best place for him to go.

I can't believe that it is over 2 months since my son was asked to leave his previous school, and just one day until the new term starts. It is even harder to believe that we still have no uniform, bag, travel or childcare agreements for when we are at work and no confirmed plan for school!

So how is it that with just a day to go, we still have no plan for school?

Saturday, June 27, 2015

Without a School

school exclusion autism


It has been 20 weeks since I posted in Rage Against the Machine about our race to find help and support for our Son before he is excluded.

due to his aggressive behaviour when he is in a state of anxiety

My 5 year old son is now without a school, having been told a week ago that we need to withdraw him immediately from the school or they will permanently exclude him. This is due to his aggressive behaviour when he is in a state of anxiety, and the challenges that this was presenting for his teacher and one-to-one support assistant.

I was so right when I wrote that we didn't have 20 weeks to wait for the support that we were hoping to get with our request for an EHC plan.

so right when I wrote that we didn't have 20 weeks to wait for the support that we were hoping to get with our request for an EHC plan

In many ways we have come a long way in understanding the causes of his negative behaviour within the school environment and the link to high anxiety levels, however this increased knowledge has been of little use in getting him the help he needs and avoiding an exclusion.

Since our Son was diagnosed with Pathological Demand Avoidance (PDA), we have learnt more about his resistance to everyday demands, the associated anxiety triggers and more importantly some of the techniques to help to reduce his anxiety and the resulting negative behaviour.

We also know a lot more about our Son's rights to an education and the process to receive an EHC plan, thanks to the resources, guidance and support of numerous charities and helplines (listed here).

I have tried every avenue to see what can be done to ensure that my Son is provided with an alternative school place

For the past week I have tried every avenue to see what can be done to ensure that my Son is provided with an alternative school place however this seems to be one challenge too far. With so little time until the end of term there is little that can be done to find an alternative school, and so we are forced to wait until he is either provided with a mainstream school or we get a provision for a specialist school in an EHC plan.

This has highlighted to us the importance of trying to get the right provisioning for him so that we don't end up in a similar situation in a few months time. And for this we only have the hoped for EHC to rely on, which means being able to clearly state the specific and quantified support we believe he needs.

we have decided to focus on our EHC needs assessment and requesting the right provisioning for him rather than fight against the exclusion

Despite my heartbreak, frustration, and anger about my young Son being denied his last 3 weeks to see out the term with his classmates before moving onto another school, we have decided to focus on our EHC needs assessment and requesting the right provisioning for him rather than fight against the exclusion.

Now I just need to figure out what the right provisioning for him is.


Sunday, June 14, 2015

What a plastic 5p taught us about dealing with meltdowns

techniques for managing meltdowns in children with autism


Saturday morning started with a game of playing shop with my 5yr old Son and 2yr old daughter. It was all going so well, until my daughter had to pay for her shopping.

My son, the shopkeeper, had determined that the total cost was 15p and my daughter only had a 20p coin. No big deal - she pays with her 20p coin and he gives her 5p change. WRONG!


Sunday, May 31, 2015

EHC Needs Assessment - Past the First Hurdle

what is took to get a yes to doing an ehc needs assessment

This week we were told by the LA that they had reconsidered our case, and will carry out an EHC needs assessment for our Son, just a week before we were due to go to mediation.

We were beyond excited and relieved to get that phone call as it has been a long 3 months. In that time we have had some highs and lows, as we struggled to gather together the evidence required to support our EHC needs assessment request.

Sunday, May 03, 2015

A well deserved break - time out from all things Autism


I have quickly found that you need super human powers to successfully navigate the many twists and turns that come with trying to get a diagnosis, obtain an EHC needs assessment and maintain positive relationships at school in a challenging situation.

After months of trying to run as fast as I could to get help for my Son, I had to call time out on Autism.

Tuesday, April 14, 2015

Using mindfulness to reduce stress and anxiety



I love my Son dearly, however there are times he completely winds me up and leaves me feeling completely exhausted, out of control and unable to cope. 

My day usually starts when my Son bounds into the room, switches on our bedroom lights, jumps on me and demands instant attention.

Trips to the supermarket can be a full on battle when he wants to steer the trolley, usually into the path of other unsuspecting shoppers.

More recently we have been caught completely off guard when my son has gone into complete meltdown for trivial things such as crumbling his weetabix when he wants it whole.

It is at moments like this when I think there must be an easier way.

I anticipated that reading the "The Family ADHD Solution" would provide some answers for explaining some of my Son's behaviour.

What I found was that book touched on the challenges presented by ADHD, but focused more on helping parents manage their own emotions when things get tough and to appreciate the good times without dwelling on past incidents or worrying about the future.

The art of mindfulness helps to manage stress, stay in balance and objectively problem solve. This involves using frequent meditation to help focus on the present without excessive criticism or judgement.

It is now been a couple of weeks since reading the book and have been trying to practice mindfulness when with the kids, to focus on the present despite everything else that is going on around us.

I don't know how much is helping with reducing the overall anxiety and stress of everything we are going through, however it has been helpful in getting me to try approach things differently and to stop moving through each day on auto pilot without stopping to appreciate the good moments.


Have you got an tips for helping to manage the stress and anxiety from dealing with challenging behaviour?

Sunday, April 12, 2015

My Son - more than Autism


This year has been a blur as we try to get a formal diagnosis and support for my Son, whilst trying to come to grips with what ASD (Autism) actually means for him, and what we as parents need to be considering in order to help him successfully navigate his way through life.

Despite our best efforts, we are facing an appeal with the LA as we were turned down for an EHC needs assessment and are in danger of permanent exclusion from school.  Without the assessments we have little idea of the best option going forward as we know so little about his particular challenges and needs.

The ongoing battle on all fronts has been exhausting and draining. 

Sunday, March 15, 2015

Threatened with Exclusion - An open letter to our Sons School

school exclusion parental letter


This week our Son's school is trying to force us into agreeing to a reduced timetable with the threat of exclusion if we don't agree. I am having to carefully craft a letter in response to this, however this is the letter I wish I could send them.


To our Son's School

We decided to place our Son in your private school as we wanted to do the best we could for our Son, and thought he would benefit from the smaller class sizes and the variety of activities that you are able to offer as a school.

Before he started school we didn't suspect that he had Autism or ADHD, or that he would struggle so much within the classroom. He had been to nursery and apart from a short period of time early last year, when there were a lot of major changes going on in his life, he had never given us any cause for concern at home or at nursery.

We thought we were doing what was best for our Son

When he started school and you reported that he was often causing trouble in class and with the other boys we struggled to understand why he was behaving this way, and were dismayed by number of incidents reported. He was not like this at home.

We asked if there could be an underling problem, you told us that many of the boys had trouble settling in and that we should wait and see. So we didn't do anything.

Initially we were dependent on you to understand what the issue might be

Before we knew it, you were calling in the Pupil Referral Unit who specialise in helping children with behavioural issues.

You never suggested the possibility of an underlying problem, and never called anyone in to get him assessed to try understand why he was behaving the way he was.

You never advised us to get our Son assessed. We had to figure this out for ourselves when we started to think that there might be more to it than just a boy struggling to settle in. We have now reached out to every professional we can think of to try find some answers, but this is going to take time.

A lack of advice meant a delay in getting a diagnosis and support from the right people

When you called us in, you told us that our Son's behaviour was causing issues at the school and that he would not be able to continue at the school without addressing these issues.

When we said that we had seen a psychiatrist who said that there were indications of Autism and ADHD and were trying to get a formal diagnosis, your first reaction was:
  • Autism was too complex and difficult for your SENCO to get involved in 
  • There was no appetite for training your staff on how to deal with Autism and ADHD related behaviour
  • There was nothing you could do to provide any support in the classroom
  • There was nothing you could do to provide any supervision, or a quieter space, at lunchtimes when most of the behavioural incidents tended to occur

You only mentioned the possibility of an EHC plan to the necessary support when we indicated that your initial suggestion of our paying for one-to-one support was not an affordable option.

You never explained what the statutory assessment was or how to approach this in order to ensure we have the best chance of getting what is needed for our Son. Once again we had to find out the answers for ourselves, and have done everything possible in submitting our request for a needs assessment.

It would have been nice if you had tried to work with us to identify options about what could be done to prevent the behaviour from occurring. Together we might have been able to come up with a solution that worked for everyone.

Instead you took the defensive stance that we had three days to come up with a plan to collect our Son on days that you felt his behaviour was too challenging for you to manage. In addition you felt that the 2 hours it took us to commute back from London was too long - so we had to find someone close by who could do it in less time.


From the start you focused on Exclusion rather than trying to help us find support

We appreciate the fiddle toy, the wobble cushion, the catch me cards, the 5 times he has been rewarded with a story when he has got 5 cards, and the tent in the classroom to provide a space for reflection in the classroom.

For these we are extremely grateful, but unfortunately they don't go far enough to ensure our Son has access to all aspects of school life - both in class, and at lunch times.

You have said NO to all of the following which could help avoid many of the incidents occurring
  • A visual timetable
  • Providing opportunities, such as nurture groups, for positive socialisation
  • Training your staff on autism and managing autism in the classroom
  • Providing any support in the classroom 
  • Providing supervision or a quieter space at lunchtimes
  • Escorting my Son rather than have him walk in line with the other boys when walking to lessons, such as music, which is known to be a trigger for my son

We have all seen the impact that this is having on our Son, and the people around him.

The number of incidents are increasing, he is now referring to himself as bad and naughty, refuses to do in work in class, and talks about his greatest difficulty at school as having to run faster than the other boys who run away from him when he wants to play.

Whilst we realise that these measures all take some extra effort upfront, it is likely that the effort you need to spend dealing with refusals to co-operate, incidents at lunchtime or in class and meltdowns in the classroom would decrease. This will also mean less stress for your staff and the other boys.

A lack of making reasonable adjustments has resulted in the escalating issues

You frequently tell us that you are "being nice" by not considering exclusion unlike other schools who would be considering exclusion due to the behaviour being experienced. You are not being nice. To me this is a veiled threat!

Your failure to make reasonable adjustments to ensure that my Son is able to access all aspects of school life is a likely breach of the Equality Act 2010, and the SEND Code of Practice.

You repeatedly comment on the impact on your staff and how upset they are getting. This could be reduced if you provided them with training on working with Autism in the classroom, and through the provision of some additional support for them from your existing resources, such as your SENCO team.

Your comment that "my Son is an intelligent boy who is able to more than capable of verbalising what has happened" when he has been sent to the office for time out after incidents on the playground shows how very little understanding you have of Autism or the challenges he faces.  

"Autism is a lifelong developmental disability that affects how a person communicates with, and relates to, other people. It also affects how they make sense of the world around them."
--- National Autistic Society


My Son is not being naughty, he is struggling due to a disability and needs help

We are unable to support a move to a reduced timetable as we work full-time and can't afford additional child care to cover these hours over and above the school fees, weekly therapy sessions, private assessments and existing after school care costs that we are already paying for.

Your emails and letters trying to force us into considering a reduced timetable or face the possibility of exclusion are putting us under tremendous pressure as a family at a time when we should be focusing on identifying our Son's specific challenges and how to address them.

While you have a legal right to formally exclude a child, this should be done only as a last resort and when you have tried all possible reasonable adjustments

I realise you are not a mainstream school, but I want to highlight that in a mainstream school this is not legal.

"Asking parents to collect their children early or putting them on part-time hours is against the law and fails to address the underlying need for schools to make reasonable adjustments to include children with autism."
--- Ambitious About Autism 

Taking my Son out of school will not help to reduce the likely number of incidents which happen when he is at school as it does nothing to address the underlying reasons for these incidents. In fact, it just teaches my Son that if he behaves in a negative way he will get to go home. I know my Son, and it won't take him long to work this out.


Informal or Permanent Exclusion Does not help my Son in any way

We are not asking you to employ additional staff to provide our Son with one-to-one support, this is what we are applying for the EHC plan for.

We are asking you to think about how you can use the resources available to you, such as your SENCO team, to provide some additional support as an interim measure whilst we try to find our Son the help he needs in the long term.

We are asking you for the time to allow the assessments to be completed, and the support put in place, rather than force us into a rushed decision which could be detrimental to him in the long run.

We wish you could be supportive in the short term until we can get our Son the help he needs

As parents we are doing everything we can to get help for our Son, but this is a long process and takes time. We are actively trying to push things forward so that things can change for everyone. We do not relish the impact that this is having on your staff and the other boys in the school but there is only so much that we can do.

My Son will not remain at your school as you are obviously not the best place for him, however I will not be rushed into making a rash decision to move him until I know where is the best place for him to be.

My Son is not going to be the last boy that you come across with these types of difficulties.

I wish that you and your staff were better prepared for dealing with this situation so that the possible need for assessments and additional support could be identified early before things reach a crisis point, and that you could help and support the child and their family through a very difficult time rather than adding to the pressure of the situation.


Have you had to deal with temporary or permanent exclusion? If so, were you able to get support in challenging the exclusion and getting the school to change their stance?
Spectrum Sunday

Thursday, March 12, 2015

Sent home for behaviour when he should be getting support



I am numb.

I have spent all my energy in the past 6 weeks trying to hold it together and following every possible route to try get help for my Son before he gets excluded from school. I failed.

Today he was sent home from school because of his behaviour.

This comes off the back of a particularly difficult time as we are currently are at a stand-off with the school. Yesterday the school told us they want to start him on a reduced timetable which means we would either need to change to working part-time or pay someone to look after him.

As working parents we can't support a reduced time-table, and our Son needs more support at school not more time at home

We refused as we don't think it is the best thing for my son, who is only going to view time off school as a treat. Also as working parents, this is not something that we have the ability to support - even if we wanted to.

Saturday, March 07, 2015

SOS SEN - A day of advice on the EHC needs assessment

SOS SEN - helping with Special educational needs



Our thanks go out to the volunteers at SOS!SEN.

A week ago we travelled to Molesey and spent the day with another mum also in the process of requesting an EHC needs assessment and two SOS!SEN volunteers (mums with kids on the spectrum) on a workshop which focused on Requesting an EHC needs assessment and appealing refusal to assess. This was the personal view that we have been looking for!

Sunday, March 01, 2015

Collaborative Negotiation to get to a positive outcome


collaborative negotiation with school and EHC needs assessments


3 week since our EHC needs assessment request, 3 weeks to a decision on whether an assessment will be carried out and, if agreed, 17 weeks to getting an EHC Plan.

My head is swimming with everything that we need to consider and everything we need to do to get support from the school and get an EHC plan from our Local Authority.

I don't know how I will be able to face many of the difficulties we have heard from other parents said that they went through trying to do this.

27% of parents have waited over two years to get appropriate support  
--- NAS Parent Survey 2015 

The thought of battling with the school, the Local Authority and possibly even lawyers & the high court, if we have to go to appeal, is really daunting. I am trying to focus on what is needed now and not worry about challenges we may never face - not an easy thing to do. So, I am trying to take things one week at a time and doing what I can to make the most of our chances at each stage of the process.

So time for a little strategising!

Saturday, February 28, 2015

Finding training and resources to understand more about autism

where you can find answers and understand more about what autism is, and what it means for your child


I have been looking into training both for us, and the school, as we want to understand more about autism and the thing we need to consider.

I also want to be able to let the school know what training they can go on, in the hope that they will consider going so that they can understand how to support my son and successfully address the challenging behaviour they have been experiencing.

So here is what I have found.

Parents/ Carers


EarlyBird/ EarlyBird Plus 
Support programmes for parents and carers, offering advice and guidance on strategies and approaches for dealing with young autistic children

Autism Berkshire Training
Training for people on the autism spectrum, parents, carers and professionals working with people with autism, promoting understanding of autism and issues associated with autism.
The courses include an introduction to autism spectrum conditions, advice for parents and carers, and life skills for autistic adults
http://www.autismberkshire.org.uk/training/

National Autistic Society Training Courses
A range of training courses, including online training.

Training includes:

There are also a range of downloadable resources available on the NAS website www.autism.org.uk 

Schools

Buckinghamshire Learning trust
The core moral purpose of the Trust is to increase the number of schools and settings giving good and better provision to children and young people and to reduce the number of schools and settings falling into Ofsted categories.
One of their courses is Autism in The Early Years - details can be found by clicking here 

They also have half day courses on understanding autism spectrum conditions, like the one introduction to autism one listed here.

Inclusion Development Programme 
Part of the government’s strategy to improve outcomes for children with special educational needs
and was first outlined in Removing Barriers to Achievement information 

They have an online course for supporting children on the autism spectrum in the Early Years

These include Inclusion Development Programme a free interactive resource for headteachers, leadership teams, teachers, teaching assistants and trainee teachers.

National Autistic Society
There are a number of resources for Educational Professionals available on the NAS website.

This includes a 2 day TEACH programme which aims to develop your understanding of how to support people on the autism spectrum using the TEACCH programme.
http://www.autism.org.uk/professionals/training-consultancy/courses/teacch.aspx


Autism Education Trust (AET)
The purpose of the Autism Education Trust (AET) is to improve the education of children and young people with autism, and has a range of training resources, all of which are accessible from their home page.

There are a number of training hubs which offer nationally delivered face-to-face training for professionals
http://www.aettraininghubs.org.uk/schools/training-hubs/

They also have a range of online resources including a schools autism competency framework has been developed by the Autism Centre for Education and Research (ACER) at the University of Birmingham in collaboration with consultants with expertise in autism.
http://www.aettraininghubs.org.uk/schools/competency-framework/


Wednesday, February 25, 2015

Facing the EHCP Assessment Process

autism education health and care plan assessment



With less than 4 weeks before the LA make their decision on whether or not to carry out an assessment, I have been trying to get a sense of what will be involved and what we can do to ensure get a yes.

With the decision looming, I seem to be permanently on edge and my main focus is on trying to find any piece of information which we can use to help us get ready.

What is an EHCP

The EHCP was introduced in September 2014 and there are next to no stories from parents who have been through it - so we are unable able to get any insights beyond the general guidelines explaining the process.

This means we don't really know what to expect, what rookie mistakes to avoid, or how much evidence the LA needs in order to think that we can't be supported by the resources already available within the school.

I don't really know what I should be doing, and this is so frustrating.

Based on our current situation, I can't help but think that this is our key chance to get help and that the decision made will have a HUGE impact on our lives and our Son's chances of success within school.

I have never let my schooling interfere with my education.
--- Mark Twain

I am sure that there will be other options, but for now we are fully focused on doing what we can to have the best possible chance now.

So, what is the Process

The EHC needs assessment will take up to 16 weeks, will require numerous assessments from different professionals and if a plan is granted this will be completed within 20 weeks. 

After this, the plan will be into place within 2 months. A decision not to carry out the assessment, or create a plan can be appealed.  

Useful resources

Both the IPSEA EHC Needs Assessment Overview and the NAS EHC Needs Assessment Overview provide an overview of the process, from making a request to appealing a decision if necessary.

I found the NAS overview has some useful resources, including a template letter which can be used to make the initial request to the LA and a toolkit which can be used to gather the views of your child

We also got a booklet from the LA in the response acknowledging our request for a needs assessment. This  explained the process, names of people who will be in contact to explain the process (still waiting to hear from them) and the details of a local organisation (FACT Bucks) who work with the council to represent views and help share future provision and policies.

A little more information to add to our fact files!

Rounding up the troops

I don't think there is a professional body or charity that I have not tried to get hold of over the past few weeks, in the hope of trying to find some help.

I have tried to get the ball rolling by reaching out to an Educational Psychologist, Occupational therapist and Speech and Language therapist, who all accept self-referrals, and have asked them to assess our Son and hopefully provide treatment. 

I am not sure if this will help or hinder us, but at least I feel like I am doing something, rather than waiting for things to happen whilst my Son continues to struggle.

We also have appointments over the next week with someone from the SEND IAS team, and someone from the Leonard Cheshire Disability team which we found through the Bank Workers Charity (supports current/ former banking workers) who are able to offer advice and support through next few months.

Fingers crossed, some of them can provide us with some of the insights we are looking for!


Have you been through the EHC assessment process? Was there any organisation or resources that helped you through the process? Would be great from others what support they were able to get ...

Tuesday, February 17, 2015

School exclusion - finding out about our rights in an independent school


autism school informal exclusion, equality act


This week I am a little less fearful about my Son's future at school as we have found out a few more facts, and we are starting to feel like the odds winning the game of "Find Help Before Our Son is Excluded" a.k.a "The Gameare a little more in our favour.

Fear comes from not knowing what to expect and not feeling you have any control over what's about to happen. When you feel helpless, you're far more afraid than you would be if you knew the facts.

-- Chris Hadfield (Astronaut)

We now know that since ASD and ADHD is a recognised disability schools are bound by legislation when dealing with behaviour linked to this disability. In addition we have identified people/ organisations who can join us in meetings with the school, and guide us through the EHC assessment process.

This knowledge has given us increased confidence to discuss options with our Son's school, and the disorientating feeling of not knowing where to turn or what to do is starting to fade.

The Legislation

Informal Exclusions are unlawful in mainstream schools
In mainstream schools informal or unofficial exclusions are unlawful, regardless of whether they occur with the agreement of the parents.

Unfortunately independent schools are not required to comply with exclusions legislation and guidance, however an informal exclusion may be challenged if informal exclusions are not contained as a Sanction in their Behaviour policy.

Equality Act 2010
All schools are bound by the Equality Act 2010 which states that schools have a duty to make reasonable adjustments to both to their policies and practices when dealing with behaviour attributable to a disability.

This includes providing auxiliary aids and services, including additional support or assistance for a disabled pupil.

So what is classed as reasonable?

This seems to be a subjective judgement based on the associated costs and resources available to the school, which makes it tricky to know what  exactly what would / wouldn't be considered as a reasonable adjustment if we don't get an EHC plan.

That said it does seem, based on the advised received to date, that the school may be required to provide some support for our Son, even if we don't get the EHC funding.

Hopefully one day this legislation will go further, and it will be easier to access support for children in school, even in private schools, which would mean a lot less stress for the family and the child.

Getting Advice and Support

National Autistic Society
I have read almost every word on the NAS Website website including their guide Asperger syndrome: a school's guide, which is a great source of information.  

We received invaluable advice during a phone appointment with the NAS School Exclusions Service, which they followed up with an email containing a customised 20 page report detailing the points discussed on the call.

This report was an amazing source of information - outlining our legal rights, advising of potential training courses and providing contact details for organisations who can offer support, including those that can offer free legal support for challenging exclusions.

Send IAS
The other great source of support was from Bucks SEND IAS who also advised us of the legislation and our rights, and are able to provide independent advice and support during discussions with the school. They also offer support for the EHC process.

Looking ahead

While the thought of a legal challenge is very unappealing, it is good to know our rights and where we can turn to should we find ourself in a situation where we forced to fight an informal or permanent exclusion.


Have you had to deal with temporary or permanent exclusion? If so, were you able to get support in challenging the exclusion and getting the school to change their stance?

Tuesday, February 10, 2015

The frustration of facing Informal exclusion

autism informal school exclusion

In my life,each time I have faced obstacles I found a way to get through it.  

Those battles seem like nothing when compared to this week which has felt like a full on war. A war against uncertainty, a war against “the system” and a war against time.

School has implemented an informal an "informal exclusion" process

Our son's school have implemented an "informal exclusion" process which means we will need to collect him on "bad days", and they will review whether the school is the right place for him if things don't improve. 

The teacher is struggling with his behaviour and it is causing issues for the other boys in his class.

It is difficult to hear the reported behaviour. Frequent throwing of toys at other children, lying on the floor howling, biting, destroying other boys’ work and kicking the teaching staff. 

This doesn't sound like the son I know, we don’t see this at home. There must being something in the school environment which is triggering this behaviour, and so that is where he needs help and support.  

School say that they can't provide support

The school say that there is little they can do to provide additional support due to a lack of teaching resources. 

They are reluctant to consider training which they feel would just be a “sticking plaster” since they are not experts in behavioural issues. 

Their suggestion was for us to pay for dedicated 1-to-1 support in the classroom. Not an option for us since I forgot to buy a lottery ticket the week our numbers came up.

It doesn't seem right, but Private Schools are not bound by the same policies as mainstream schools and don’t have the same obligations in terms of supporting special needs and putting in reasonable measures to avoid exclusion. In addition we are told that within a private school setting is is harder to access to the same services which can be provided in mainstream schools. 

And now all our local mainstream schools have no places to take him - so we can't move him.

It feels like our Son is paying a high price because we decided a year ago to put him in a private school where we thought he would benefit from smaller classes and would have more opportunity to experience extra curricular sports such as swimming. 

In trying to do what we thought was the best for our son, we seem to have put him at a disadvantage. 

We need to apply for special funding through an EHCP

Our hope is to apply for funding from our Local Authority and request an Educational Health Care  (EHC) plan, but we have been told that they are less willing to provide this to children in private schools. 

We have sent off our request to the Buckinghamshire SEN team, and have 6 weeks for them to respond on whether they will do an assessment. If they agree, it will then take at least 20 weeks before the assessments are completed and a decision on funding is made.

The problem is we can’t wait 20 weeks.

Trying to find help before exclusion

We are now playing a game of “Find Help Before Our Son is Excluded” – a cross between a treasure hunt, Snakes & Ladders and Don’t Panic. Not the snappiest of names, but it is a game the keeps you on the edge of your seat.

The rules of the game:
  • Hunt on the internet for anything to do with autism, Aspergers and ADHD - trying to find out about available therapy, training courses (for us/ him / the school), helplines and other advisory services
  • Follow up with phone calls/ emails/ letters to try find people to discuss your situation with, and identify some advice and guidance on things that might be worth considering 
  • For every successful call and piece of advice obtained, you get to advance forward however there are also the setbacks as you are passed from pillar to post or a promising option turns out to be a no-go either because the information is outdated, you don’t fit the criteria for consideration or they don’t quite know what to do as your situation is “slightly different to the norm” 
  • The game is won when you get help for your son, and lost if the school permanently excludes your Son and you are forced into a school far from home as none of the schools in your area have any space in their reception classes

So far we have contacted a child psychiatrist, educational psychologist, occupational therapist, Pupil Referral Unit, the Buckinghamshire Schools Admission Team, two local mainstream schools, an ASD Early Bird Training Programme, three support charities and two helplines. 

And we are still trying to getting help within the school.

And so the game goes on, and we continue to wage the war.

Friday, February 06, 2015

The week we found out

asd autism

This week we were told that my 5 year old son likely has high functioning Autism Syndrome Disorder /Aspergers and ADHD.

For the past 2 years we have been regularly called in first by his nursery and then by his new school to talk about his behaviour which seems to get worse as the class size gets bigger. During this time we have struggled to understand the behaviour being described, as we rarely see the same behaviour at home.

We escaped the terrible twos, didn’t get much sibling jealousy when our daughter was born 2 years ago and apart from being a little “in his own world” we never really had much of an issue with other kids when on playdates or at the local soft play centre. So why at the age of 3 and a half did he start causing issues for his teachers and classmates? 

Now we know.

I have to admit that as I sat listening to the specialist explain what Aspergers I was filled with feelings of guilt, sadness and relief – and barely paid attention as she went on to explain that it was a neurological disorder and that what is currently a weakness can also become a strength.

Guilty about not having sought help earlier, for being a working mum who isn’t always around to support him and for wishing we didn’t all have this mountain to climb.

Sad for the loss of a life that I had dreamed for my son – a life where he would flourish at school, be surrounded by friends and grow up feeling happy & secure – and sad to think that he is more likely to be misunderstood, encounter bullying and face challenges at school and in later years.