A blog that explores the concept of PDA as well as offering an insight into life with a child with PDA

I have been a bit quite, to say the least during the past few months, for a variety of reasons.  Sometimes, the roller coaster that is life and all of the ups and downs that it has to offer can leave the best of us slightly flat and deflated. Hopefully, I will soon be back to speed and updating my blog on a more regular basis.

On a more positive note I am thrilled to share with you that Tracy Rose is raising money for the PDA Society by bravely jumping out of a plane at 15,000 feet.  All of the money raised will be donated to the PDA Society to support them with the work that they currently do supporting families affected by PDA nationwide.  As a small charity, run entirely by volunteers, the PDA Society would, I am sure, be extremely grateful for any donations.

Due to the ever increasing awareness of PDA among professionals and parents alike our flagship charity needs to grow at the same pace as the increasing amount of people that call on them for support.  In order to do this they will require donations and support from us, their members and families affected by PDA, so please spare whatever you can, no matter how small, for this worthy cause by following the link provided.

Sky Dive for the PDA Society

Many thanks in advance for any donations that are made and the very best of luck to Tracy.

 

Please Sign my Petition

Hello to all of my readers and followers.  I have spent many years trying to raise awareness of PDA in order to raise the profile of this deeply misunderstood condition through my blog, my book, support groups and facebook.

I have also spent countless hours trying to support other parents via the above mentioned media and I have also given a lot of parents one to one support via email, the phone and PM’s on facebook.

The reason for my passion and my drive is because I know, only too well, that without the correct support and understanding many of our children spiral into into the darkest and deepest of places.  Due to the intertwined relationship between parent and child this means that the parent often travels with them into a bear pit of anxiety, depression and despair.

Now that PDA is receiving far more national coverage and awareness I am pleased to say that although improvement is slow we are gaining ground.  Compared to five years ago, which is when I first joined the PDA community, awareness has simply mushroomed. More and more parents are requesting to join support groups because PDA has been mentioned to them by a professional.  Also I am aware that we have a steady growth in NHS clinicians diagnosing this presentation of ASC.

Sadly, in Stoke on Trent and Staffordshire as a whole there is still no diagnostic service available for these children and their families.  So I am asking if you can now support me and help me to raise awareness of this condition and the need for a diagnostic service for the parents in my home town.

Please sign and share the following petitions in order to help me secure support within my local area.  Your help would be most gratefully appreciated.

Petition for the commission of a diagnostic service for PDA in North Staffs

The manager of the NAS Stafford branch is also working hard collaborating with me in order to assist and help parents in South Staffs, again your help would be very much appreciated.

Petition for the commission of a diagnostic service for PDA in South Staffs

If you would like to start a campaign in your own area then please do read the post on my sister blog for guidance on how you may proceed with this Campaign Guidance

If you do decide to start a campaign the very best of luck and I hope that your efforts pay off.

For more information about PDA please visit The PDA Society , The PDA Resource and PDA Guidance

Another One Bites the Dust!

On my last post about Mollie and education I described how demand avoidance was causing a noticeable decline in attendance at Mollie’s alternative provision.  I had hoped that things would improve following the Christmas holidays when the building pressure of Christmas had been removed.

Sadly things continued to decline and she only managed two sessions following Christmas and has now not attended at all for weeks. Knowing Mollie as I do and being familiar with how these patterns ultimately turn out, I made the decision to not pursue this placement and informed the relevant professionals.

From the beginning of the placement I was aware of factors that were likely to possibly contribute to difficulties.  I tried to ensure that these factors were addressed as a preventative measure but sadly no further support was forthcoming.

Mollie had requested a to return to school at the end of May 2015 and we are still months away from a finalised EHCP and therefore a suitable and correctly supported placement.  I won’t go into the fine details because I feel that it would be inappropriate to do so at this time.  All I will say is that due to huge delays in this process from beginning to end we now find ourselves going through the horrible process of ‘Formal Complaints’.

The school were wonderful and I have nothing but praise and thanks for all of their efforts.  They did everything that I asked of them and worked collaboratively with me to try to ensure success.  But with limited support from the LA we were both greatly restricted with what we could put into place to support Mollie.

It has been a very difficult period that has required an awful lot of resolve on my part. In order to stay strong and supportive for Mollie I have to try to emotionally detach myself from the situation.  This is so difficult for any parent to do when you are seeing your child so visibly crushed and her emotional well-being plummet through the floor.

So where do we go from here?  Well after much discussion, Lee and I have decided that she needs time to recover from these experiences.  Quite frankly she was destroyed, living day and night in her bedroom and skin picking was off the scale. While the LA are standing firm on saying that they are unable to provide Mollie with suitable support until the completion of the transfer of her statement to an EHCP, we see little point in setting her up for another failure by starting another provision that will also be restricted by hours and support.

We are therefore going to keep her at home and allow her ample recovery time. We are currently making progress with her, following several weeks of self imposed confinement to her room I have been able to tempt her out, re-engage with her and we have recently managed a couple of trips outside of the house.

For the interim we are hoping to secure an on line home education package.  This will allow her to meet other pupils online from what, we hope, will be her final placement. Will this be agreed, well your guess is as good as mine?

To the many parents who are currently facing similar battles stay strong, keep fighting, never give up and the very best of luck.

Some of you may find my new resource ‘PDA Guidance‘ helpful for you in your journey.  It would be a shame to put all of my recent research to waste.  It may not have benefited me, other than knowing how to present a complaint, but it may help you.

Time to go and look for an extra bottle of emotional detachment and strength me thinks!

Alternative Provision SEN

A child with SEN may be receiving an education at an alternative provision for a variety of reasons.  The child may have been permanently excluded, informally excluded (which is illegal) or be waiting for a suitable SEN provision to become available to name just a few.

In addition the parent’s of a child that has previously been home educated may have informed the council that they no longer wish to home educate their child.  This may be because the child has expressed a desire to return to school or because they no longer feel that home education is sufficiently meeting their child’s needs.  Where responsibility lies for the child’s education in this scenario is not readily available which may provide a grey area.  However I have found information on the Government Ombudsmen’s webpage that appears to clear this up.

“When councils have concerns about a child’s education or, as in this case, are alerted to a family who no longer wish to home school, they have a duty to ensure those educational needs are met.’ council duties to home schooled children

It is also worth noting that during the period of home education the LA should annually review the child’s statement or EHCP and state on that statement/EHCP a suitable provision for the child to attend should, I presume, the child wish to return to education.

p.g 215 (10.32) In cases where the EHC plan gives the name of a school or type of school where the child will be educated and the parents decide to educate at home, the local authority is not under a duty to make the special educational provision set out in the plan provided it is satisfied that the arrangements made by the parents are suitable. The local authority must review the plan annually to assure itself that the provision set out in it continues to be appropriate and that the child’s SEN continue to be met (see Chapter 9). Where the local authority has decided that the provision is appropriate, it should amend the plan to name the type of school that would be suitable but state that parents have made their own arrangements under Section 7 of the Education Act 1996.SEN Code of Practice

Alternative provision for a child can be commissioned by schools or by the council. In some cases, if the cost of the alternative provision cannot be met by the schools SEN budget or by the child’s EHC plan funding, then the council should provide top up funding. But what should parents be expecting from that alternative provision with regard to hours and any special education needs that the child may have.

Hours and SEN

According to the SEN Code of Practice 2015

p.g. 216 (10.39) Local authorities must make arrangements where, for any reason, a child of compulsory school age would not otherwise receive suitable education. Suitable education means efficient education suitable to a child or young person’s age, ability and aptitude and to any SEN he or she may have. This education must be full time, unless the local authority determines that, for reasons relating to the physical or mental health of the child, a reduced level of education would be in the child’s best interests.

p.g. 216 (10.40) Where this education is arranged elsewhere than at a school it is commonly referred to as alternative provision. Alternative provision includes pupil referral units, alternative provision academies and alternative provision free schools. Local authorities must have regard to statutory guidance on alternative provision and on the education of children unable to attend school because of health needs. This guidance specifies that the education provided should be on a par with mainstream schools.

p.g. 216 (10.41) Local authorities, schools and post-16 education providers may commission alternative provision for other children and young people who face barriers to participation in mainstream education or training.

p.g. 217 (10.42) Alternative provision must be arranged in line with a child or young person’s EHC plan. Local authorities may need to amend a plan where, for example, a child or young person is no longer attending the institution named on it. They should also consider whether the EHC plan needs to be reviewed to ensure that the child or young person’s SEN will be appropriately supported. Where alternative provision is specified in a child or young person’s EHC plan the local authority must arrange that provision.

p.g. 217 (10.43) Where a child or young person in alternative provision has SEN that are not specified in an EHC plan then the alternative provider should employ a graduated response to these needs.

p.g. 217 (10.44)  The support that will be provided for children and young people with SEN, with or without an EHC plan, should be agreed as part of the commissioning process. To allow for continuity of support, mainstream and alternative providers should promptly share appropriate information on a child or young person’s SEN. Commissioners of alternative provision should ensure that there is a clear plan for pupils’ progression and keep the arrangements under regular review so that they can be adapted in response to the needs of the child or young person. Where an alternative provider has concerns that a child or young person may have SEN that are not being appropriately supported then they should raise their concerns with the commissioner and agree how these potential needs will be assessed and supported.

p.g. 217 (10.45) Alternative provision includes providers of online learning. Whilst it will not be appropriate in every case, online learning can offer certain benefits where there are significant barriers to a child or young person physically attending an educational institution. For example, online learning can provide for real-time teaching support, allow access to a broader curriculum and offer opportunities for students to interact with each other. Decisions on whether to arrange online learning are for the local authority or institution commissioning the provision to make, although they should take into account the views of professionals, parents or carers and the child or young person.

p.g. 217 (10.46) In making this decision, commissioners should give particular consideration to the support that will be provided for children or young people’s SEN, as well as their social, emotional and physical development. Where feasible, online learning should be accompanied by opportunities for face-to-face contact with peers. Any decision to use online learning from a child or young person’s own home should include an assessment of his or her suitability for independent learning and home

What if your child still has a statement?

Ipsea Guidance if your child still has a statement

What if your child is transferring from a statement to an EHC plan?

p.g. 15 (x) SEN code of practice 2015 If your child still has a statement there is a statutory transitional order accompanied by transitional guidance, to facilitate the transfer of those with statements to EHC plans.  They ensure that during the transition period local authorities must continue to comply with elements of the Education Act 1996 in relation to children with statements.

p.g. 7 (2.2) Transition to new SEN & Disability system There is a transition period during which children and young people with statements of SEN and young people who receive support as a result of an LDA will – where they meet the criteria for an EHC plan – be transferred over to the new arrangements. To help ensure these children and young people continue to receive the support they need, and to maintain their rights and protections, transitional arrangements are in place. The Transitional and Saving Pkrovisions Order 2014 maintains during the transitional phase elements of the 1996 Act and the 2000 Act, relating to statements of SEN and LDAs respectively.

p.g. 22 (5.6) To transfer a child or young person from a statement of SEN to an EHC plan, a local authority must undertake a Transfer Review. This will require them to undertake an EHC needs assessment under section 36 of the 2014 Act. The Transfer Review will allow for outcomes to be developed for inclusion in an EHC plan and provision identified to support the child or young person to achieve those outcomes. Until the Transfer Review is completed the local authority will remain under a duty to maintain the statement of SEN and arrange the special educational provision set out in the statement.

What can you do if you do not feel that the council are fulfilling their duty with regard to alternative provision.

In the first instance you need to make a formal complaint to your local council to allow them the chance to put things right.  If your complaint is not dealt with to your satisfaction you can then complain to your Local Government Ombudsman.  Please read all of the Local Governments Ombudsman page about how to complain very carefully and read all of the links contained within the page because there are a lot of caveats regarding what types of complaints the Local Government Ombudsman will or won’t investigate. making a complaint

 

 

 

 

 

 

 

Demand Avoidance Kicks In!!!

Well, Mollie managed about four weeks of school before the tell signs that all was not well began to show at home.  What I have learned is that Mollie, at age 12, now has a different presentation of PDA than she used to have.  With maturing years and better emotional regulation she now falls into the category of compliant child at school, where she masks her difficulties, compared to how she used to present which was explosive in all settings.

She was also masking her anxieties and fears at home because I was not detecting any inner angst or difference in behaviour at home. But eventually she could mask no more.  During an eight day period we experienced two massive internal / emotional meltdowns.  Again these were different than the past because they didn’t involve violence but did involve hours of sobbing and being in complete inner turmoil.  We haven’t seen the likes of these for years but Mollie has quite rightly linked this change in her internal state as coinciding with attempting to access school.

She has also described the intense emotional meltdowns as far harder for her to cope with than the explosive ones.  She states that an explosive meltdown gets everything out enabling her to be able to recover and move on from the incident far quicker.  Her desire to not show those behaviours is a huge internal battle which results in an emotional meltdown which leaves her exhausted, very low and can take days to recover from.

In a nutshell the demands and expectations that she has placed on herself by wanting to go to school and to do well by complying and trying to be ‘normal’ (her words not mine) have caused her to, in her own words, devolve.  Consequently she has withdrawn from school and only attended for three out of the past ten days.

She describes herself as being in a state of constant fear and experiencing a constant internal battle.  She desperately wants to do well and to behave in a typical fashion but her demand avoidant side is constantly battling against the compliant side telling her to avoid, throw things, shout and scream and so on.  She describes it as like having two Mollie’s in her head, two alter egos both trying to dominate the situation.

When demands are low and she is in full control the compliant Mollie becomes the stronger alter ego but when any pressure is applied either real or implied or even from Mollie herself then the demand avoidant alter ego becomes the stronger of the two.

I have become so used to living with Mollie and making the necessary adjustments for her that is has become second nature and totally normal for us.  I had even thought that the child often described as having an extreme presentation of PDA had perhaps, due to time and the correct handling strategies, become far less severe in her presentation.

The reality is that her avoidance and anxiety is as extreme as ever when she is not in the safe bubble of home.  The outward presentation may appear calmer and more accepting of demands but the internal fear of not being in control is as strong and as dominant as ever.

Mollie has proven that within the home the more control she has, the less that she is restricted by others and the more choice that she has over her own life the more she is able to succeed.  Let’s just hope that we eventually manage to secure this same flexibility and choice within education in order to give her a chance to succeed and to escape her emotional cage that has kept her a prisoner for so long.

So what to do now, well, all we can do is to try to reduce any triggers and to give her more control at school by making fair and reasonable adjustments in line with her SEN, while simultaneously ensuring that home is as calm as possible.

Hopefully by stripping back time and time again when her anxieties rise we should eventually be able to help her find a suitable plateau where demands and tolerance become more evenly balanced.  Will this be enough, well, only time will tell? Hopefully as soon as more support can be released we may be able to create a more flexible and less structured school day for her.

On a positive note I have learned a lot about Mollie and how she will cope in school and what type of provision may be suitable.  Although Mollie has come on in leaps and bounds over the past few years her extreme anxiety over demands and not being in control will mean that she will still require maximum support and flexibility within school.  Even following a very short timetable has been too structured, too routine and therefore to demanding for her to follow.

Tomorrow is another day and a fresh school week, so we’ll get up, dust ourselves down and try again.

 

Mollie Goes to School

Following on from one of my earlier posts which you can read  here I thought that now would be a good time to give you all an update on how things are going.

Following my request for interim provision to be provided for Mollie, until a permanent placement has been identified and her EHCP finalised things have come on in leaps and bounds.

For many parents the thought of a child with PDA attending a Pupil Referral Unit may simply be seen as a disaster waiting to happen.  We may often assume that such a setting may be inflexible and rigid with tried and tested behaviour management strategies that have served them well for many years.  So it was quite a pleasant shock when I went to visit one and found the reality to be the polar opposite of what I had previously perceived.

Mollie, during her initial visit, immediately took to the head of the school and the wonderful facilities that are available for their students.  Learning is very much based around doing projects and there is a strong leaning towards creative topics and encouraging artistic flair.  Perfect I thought but now to the hard bit,  you know it folks, the bit where you try to explain PDA to a professional has only recently heard about it.  Not to mention that you need to follow this introduction to PDA with a request that they completely throw away all of those tried and tested methods and accept a whole new approach to behaviour management.

Thankfully this did go very well and the head was open and willing to learn about PDA and the necessary strategies that would be required in order to keep Mollie’s anxieties low when she is in school.  After all, if you can keep her anxieties low then this in itself can drastically reduce overtly challenging behaviour.  Following this initial meeting I forwarded the Head some links on PDA which she duly read and shared with a hand picked selection of staff.

We then attended a meeting with six staff members, including the head, and discussed PDA, Mollie and how her needs could best be met in more detail.  It was at this point that I shared with them a document that I had created outlining Mollie’s condition, how it presented in her and what I felt would be the most suitable provision and support for her.

Mollie Sherwin – Education

The following evening we took Mollie back to the school and each member of staff from the meeting had prepared for her a menu of topics that she could do in school.  The head went through each list with her and Mollie could choose which things she fancied trying and which things she didn’t want to do.  From this list a timetable of short sessions was drawn up and a very nervous Mollie attended school the next day for the first time in over two and a half years.

It is now two and half weeks later and she has attended every single day for a period of between approximately two and four hours a day.  She has enjoyed one to one sessions with six different staff, which is an amazing achievement.  Her lessons include maths, English, IT, Art, Urban Art and Environmental Science.  Each lesson she chooses from a prepared list of activities what she would like to do.

We still have a long way to go and this may of course be a honeymoon period but I do have high hopes.  I am not experiencing the spike in behaviour, that is all to familiar for so many of us when our child is holding things in when they are with others.  In fact since starting school she is actually, on the whole, happier and calmer at home.

It has taken us twelve years to reach this wonderful milestone, and I don’t mind admitting that it is a milestone that I certainly never thought would happen.  I do believe that the years of radical unschooling have been instrumental in calming Mollie enough in order to be able to access education some two and a half years later.  Other contributory factors to the vast improvements that we have recently seen are, I believe, Mollie’s maturing years, puberty & hormones and finally her total and utter awareness and understanding of her condition.

A big thank you to the wonderful provision that is currently supporting Mollie and helping her on her journey back into education.   You have made one little girl, one big brother, two parents and three grandparents very, very happy indeed.

A thought to end on is that when it comes to schools it really isn’t the type of provision that is always important but the flexibility and willingness from the staff who work there!  Therefore never judge a book by it’s cover or from what you may have heard from others, open the pages and have a read for yourself because you may be pleasantly surprised at what you find.

 

Living with PDA is no small feat and can often require the complete and utter sacrifice of the main carer. This ultimate sacrifice can simply but completely be the sacrifice of oneself in every shape and form.  This is not true in all cases as many children are affected to varying degrees by their condition but, for me and for many more parents that I know via support groups, it certainly is, was and will be the case for many.

Every essence of me, and of who the person that I was simply had to be sacrificed in it’s entirety in order for me to meet my child’s needs. I had to wipe blank my whole personality and my needs as a human being in order to support my child.  I, in effect, became a robot who I often felt was only there to service my child with her every want and whim and to remain emotionless during the numerous meltdowns, violent and verbal abuse.

Infact, it was whilst I was seeking help and support from ‘Mind’ that my councilor informed me that my mind set was similar to that of a person who had suffered domestic abuse.  I could no longer describe who I was or what my purpose in life was. I was to all intense and purposes simply an extension of Mollie and of PDA.  I was gone and PDA had become the only description of who I was.  Without PDA there was nothing of me left, such had my caring role consumed my life and every aspect of my inner soul.  However the sacrifice was one that I had to make, there was no choice, my child needed me and if that meant complete self sacrifice then that was what I was going to have to provide.

In time my life and Mollie’s simply became two brains, two bodies and two souls walking the same path linked by an invisible membrane that kept us inextricably together and would not allow us to part along individual paths. A parent recently said on a group that she and her son where simply one life, conjoined together and inextricably intertwined. This analogy is so very true for Mollie and I.  Our lives did indeed become one, at times it often felt that the union was not a fair and balanced one but at other times we were so completely and utterly in tune with each other.

Together we battled the injustice of being so totally and unfairly misunderstood, her as the child and me as the parent. Together we reacted the same, we fought tooth and nail against the misunderstanding of others and then exhausted from the battle we both retreated to the safe haven of home.  Together we both mourned for the loss of the outside world that lay in view outside of our window, we mourned for the acceptance that we both craved but which alluded us at every turn and we mourned for the loss of being able to be our true selves.

Eventually we learned how to co exist in harmony with each other.  After years of me having suppress my inner being in order to nurture and nourish Mollie she began to let me be me again.  Also after years of the world and I trying to make Mollie be something that she simply couldn’t be I learned to accept her just as she was, thus giving her the freedom to be her again.

We still need to both adapt to each other due to our very different mind sets, ways of dealing with things and our own individual priorities.  We are two very different people but through PDA we did become united as one single entity with a very real and shared experience of coping with the outside world when you are perceived as being different, at fault and not accepted.

With maturing years Mollie has naturally and through teaching, adapted her behaviour so that it is acceptable but without having to squash the true nature of who she is out of her.  I have also had to adapt my behaviour in order to fit in with Mollie’s needs, at times I did have to completely squash the true nature of who I am out of me in order to do this.  However as her mum and the adult this is surely my place to do so.  But slowly and in time she allowed me to re piece the inner me back together and I am gradually beginning to feel like me and to feel whole again.

We crumbled together, we fought together, we withdrew together in order to protect ourselves from further harm and now we are healing together and beginning to find ourselves and to step out into the outside world together. We are one life, one experience, one true understanding of each other and we will always be forever inextricably linked in our shared experiences and understanding of each other. Only we truly know and understand what each other has gone through and endured during our journey with PDA.

Now that we are both growing in confidence and healing from our wounds it appears that the membrane that forced us to stay so close together is relinquishing it’s hold and gradually stretching.  Mollie is now wanting to mix with peers, attempt school again and have a life of a typical teenager.  I am going to slimming world, the gym, spending quality time with my husband and doing arts and crafts.  PDA and the reactions of others forced us to become one and while we will always have that unique bond of our shared journey we are also becoming individuals again and finding an individual life for ourselves.

We have driven each other nuts over the years and life has been tough and unbearable at times.  But now the light of hope is shinning bright and strong, beckoning each of us in different directions.  Mollie is becoming a wonderful, strong and funny young lady who wishes to find friendship with peers and I am beginning to find me again.

Hello me, it’s nice to be back and to feel like me again. I am stronger, wiser and more knowledgeable from the experience. I will never be the old me but it is exciting to see who the new me will be.  The most important aspect is that I am now free to be the person that I was perhaps destined to be and maybe PDA was the signpost that I needed to find that true person and to fulfill the role that life’s grand plan had in store for me!

Was I really destined to own a bed shop for my natural life or was I destined to do something more, something that would reach and help far more people than simply selling them a bed. Perhaps this is also true for Mollie, was she destined to be a run of the mill kid or was she destined to make a difference for the benefit of others.  I like to think that the latter is true, there have been times, and there still are, when the thought of life’s true destiny and it having a plan for both of us is the only thing that has kept me going.

Thanks to a wonderful head and team of staff at a local Pupil Referral Unit who have taken PDA onboard, read and learned the strategies as well as valued our input and who have also gone to extreme lengths to meet Mollie’s needs, with great humour, enthusiasm and no pre-conceived judgment, things are looking even brighter than I ever may have even dared to hope for.

Tomorrow my courageous and brave daughter is attending school for the first time in over two and a half years, but that will be another chapter and another blog post. The purpose of this post is to give hope to those who are still fighting for air and battling to adapt and to survive in the bear pit that is, at times, life with PDA.

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For more information about PDA please contact or view
http://www.pdasociety.org.uk/
http://www.thepdaresource.com/
http://www.autism.org.uk/about-autism/introduction/what-is-pathological-demand-avoidance.aspx

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