Monday, 17 February 2014

Part Time Time Table and Exclusions

Part time timetables and school exclusions are subjects that cause me great cause for concern. For anyone who has had the iron constitution to read their way through my blogs you will know how mainstream education catastrophically failed Isaac. His last months were very part time and packed with exclusions.

I just wish that I knew then what I know now. I was given the impression by those experienced in education that the part time time table was in Isaac's best interests as he couldn't cope with any more.

The reality was they couldn't cope with him and didn't know what else to do. I feel so angry now that I complied for so long but I truly was desperate to help Isaac and I am sorry to say that if some one had told me that standing on my head whilst singing Bohemian Rhapsody would have helped my little man then I would have done it!!

When I look back Isaac's first "absences" from school happened when he was only in reception. I would get a phone call around 8 am to say his TA was ill, they could get a replacement but they knew Isaac wouldn't like that so what did I want to do? Well, what a loaded question!!! Do I send him to school, into certain disaster as we all knew he wouldn't cope or do I keep him at home. It was Hobsons Choice..... I had no choice. I failed to ask how he was marked absent on these days, I assume it was " authorised absence", that doesn't tell the true story does it!

On a few occasions I accompanied Isaac into school as his TA when one wasn't available, I refused to keep him at home and said I would support him...... and I did..... its only now when I look back I can see how wrong this whole situation was.

As the situation deteriorated Isaac's education went down to 2 hours a day, even then he could easily get excluded within those two hours. The Head Teacher told me she had spoken to the head of the LEA who had authorised as much flexibility as was required in these extreme circumstances even though it was not protocol. Why the heck hadn't I realised at that point they had no idea, they were out of their depth and they were breaking the law but it was draped under the banner of "exceptional circumstances".

Wrong, wrong, wrong, wrong, no, no , no!!!!

I was fed the line that it was in the child's best interests, and as I was desperate at this point I went along with it. For a meeting near the end of Isaac's mainstream education I wrote a 3 page document about the detrimental effects this situation was having on Isaac.... I received no acknowledgement.

It was then we walked away.

Isaac is now in a small BESD school, and guess what..... he is in full time education!!! So, it turns out he doesn't need part time, he can cope with full time. Only it has to be the right full time.

Up until the end I still clung to the fact that we all had Isaac's best interests at heart, but in those last few meetings I had comments such as " Isaac's mum consistently fails to adhere to the exclusion protocol and will take him ice skating and to have fun with his grand parents whilst excluded". I refer back to the document we had submitted regarding Isaac's emotional ad psychological well being. We had stated how damaging the exclusions were, he was withdrawn, covered in eczema, had developed an eye tick, and needed " to wash the smell of school of him" when he got home, so yeah we didn't further chastise him but we tried to scrape his self esteem off the floor. This was never acknowledged.

I consider that we are so lucky now. We have found a school were Isaac is beginning to spread his wings. It is slow progress but I am still very cross at what happened to my child.

I know Isaac is not an isolated case, I hear so many stories of children who cant go on school trips, or attend school discos or be taught in the class room, or need part time education. I suspect in reality actually non of these are the case and in fact it is the failure in the understanding of autism and the failure of the support that leads to these conclusions.

In view of what we have been through I was so excited to read about a campaign called Ruled Out, instigated Ambitious about Autism. http://www.ambitiousaboutautism.org.uk/ruledout

They are bringing to the fore everything that I have just said was wrong with Isaac's mainstream education.

2013 Research highlighted that 20% of children with autism have been excluded in the last 12 months.

4 in 10 children with autism have been excluded illegally during their time at school.

Over half of parents of children with autism say they have kept their child out of school for fear that the school is unable to provide appropriate support.

Please go to their page and sign up to stopping the illegal exclusion of ASD children.

They have a great guide for parents, a video, and a link to write and inform your MP along with a  petition to sign.

Please look and make a difference. I know from the online group I am a part of that children are unfairly excluded from many aspects of "normal" school life on a daily basis and it goes under the radar that it is in fact illegal.

It needs to stop.

Thursday, 30 January 2014

One Year out of Mainstream Education

I have just realised it is one whole year since we walked away from mainstream education amidst chaos from those who had no idea what to do with our son. He had spent over a term on a very reduced timetable, he would not integrate with his class any more and he couldn't go into his classroom. He was failing to integrate with most activities that were presented to him and he was totally in charge of his situation within school. I have written many times how Isaac, by the end was in control of his schooling. He knew exactly how to behave to get himself thrown out and excluded. It was like watching a moth go back time and time again only to be hurt each time but not knowing what else to do.

School had made adjustments for Isaac but it was evident that reintegration plans and behavioural plans would not work because if Isaac chose not to engage he could just run away, climb on the bike shed roof, play chase with the teachers through the school. There was no incentive strong enough and no boundaries secure enough to contain him. During week 5 of a behavioural reintegration plan, with him being in school a few hours a day he was excluded everyday. Isaac was so stressed, becoming withdrawn, was covered in eczema, had developed a persistent eye tic and was increasingly violent. We said enough was enough and we took him out of school, despite the horrendous circumstances the information and advice that was given to us was shocking.

First we were told we were breaking the law, then a lot of pressure was placed on us to say we were home schooling. We consistently said we were not home schooling but we were not putting our child back into such a damaging environment.

We researched locally were would be appropriate to send Isaac, a process through which we had absolutely no guidance from the LEA. We found a small independent BESD school but the LEA said this would not be funded and consulted two local special schools which we visited and knew from the start were wrong. This was a paper exercise by the LEA having visited the schools told me they were wrong for Isaac but this consultancy period had to take place.

Eventually it was agreed Isaac could attend the BESD school (this was mainly achieved through the unwavering, and I am sure for those on the receiving end, the down right dogged persistence of daily emails by the other half).

Despite all that had happened my feelings towards a  "special school" were negative. I knew how clever my little man was and I didn't want him to have to go. I really had trouble letting myself accept
this was the right path. On reflection, I was having to let go of what I had planned in my head for my son and accept this alternative future. I am a midwife and have had to help numerous parents cope with birth defects and trauma with their babies. We look at the concept of "the loss of the perfect child". The loss of the ideals that we as parents have in our heads. Well, this is what I had to face. Its not that I didn't know, its just know I was about to change both his world and mine and it was unknown. I was scared.

Isaac started his new school at the end of May. It has been a rocky road and remains so. We have good days and bad days, but more good than bad. He will never be excluded and this factor alone is vital. He has his own class room but is beginning to choose to access lessons with the other children when he feels able. There is a great reward structure in place. Most importantly, he is accepted. Neither he nor I are "blamed" for his behaviour and this has boosted both our self confidences. Most importantly the amazing people there see Isaac for who he is, and they are the only other people I have come across who know and understand what makes him tick.

Had I had a crystal ball to see what was achievable I would have walked away from mainstream sooner and not tried to comply with their "integration" plans. If a child has got to the point that they are attempting to educate in a corridor or they are being repeatedly excluded for their additional needs then I would seriously consider getting out. By the time you are at that point the writing is quite literally on the wall!

 I feel lucky that now Isaacs needs are being met. Everyday he is hard to get up, and out to school that is just a part of PDA, it still takes on average 5 mins to get him out of the car BUT last Friday he said, he wished school was on a Saturday too as he was really enjoying it!!!!

What a difference a year makes!

Monday, 27 January 2014

How does a Marraige Survive PDA?

How does a marriage survive PDA? I haven't got an answer, I am asking the question, how does it?

I started thinking about this as I was thinking about the holiday we have booked for the summer. We are going on a ferry to Holland, (we cant fly as we know it is just unachievable for us, I feel bad that my children are the only ones out of all their peers who haven't flown but on the other hand no one ever died from lack-of-plane-itis!!!) We are going to Centre Parks for a week, we have pushed the boat out and booked a really great chalet with a Jacuzzi and a sauna. Isaac needs to spend the majority of his time in his " secure base" so this give us space to holiday in a house! He can tolerate short bursts of activity at the right time but the needs to retreat. We also have two other children they need to get out, socialise and experience. I am trying to instil in them they can travel and go where they desire. We intend to do what we did last year and catch a train to Amsterdam and explore. We experience together, we learn to read the train timetable, we struggle with the language, we order what we cant read on the menu and delight in what we get. Number 1 and 2 child adore our expeditions, be it to Leeds to try Sushi or Amsterdam to ride on the trams, we are stretching our wings together and for me this is so rewarding, we are a team taking on the world. But.... part of the team is missing, it is back at base. Since understanding PDA strategies and learning from bitter experience we are not going to place this stress on Isaac when we know it is not achievable but yet again the hubby and I are leading separate lives.

Getting to were we have has been a rocky road. It has been full misunderstanding and at times bleak misery. I know we have at times both strongly considered walking away..... but to date we haven't. Due to employment difficulties my husband has worked away 5 nights of the week since Isaac was 1. As the years have gone by and difficulties have arisen we have accused and misunderstood each other as we knew no better. Experiencing the behaviour difficulties on  a weekend he felt the kids played up for him and were better during the week. I got cross as I didn't realise I had developed PDA coping strategies which he had no idea about and was cross that he would miss manage. When parenting is going wrong all you can do is tighten up those traditional values of obedience and parental control, every parenting course advocates this. What we know now IT DOESNT WORK AND MAKES IT WORSE!

Our sheer trauma and frustration as Isaac fell out of mainstream and was home educated by me nearly finished us off. Neither of us had an outlet and we stopped communicating. The pain of seeing what was happening to our son  was almost unbearable. We fought as a team but were very isolated from each other. As Isaac's circumstances have improved so have ours. Understanding the type of parenting Isaac needs has really helped and I truly thank the SALT who Dec 2013 mentioned PDA. It has been a life saver.

We still get very little time together, I need to work one day of every weekend, which leaves us with one day left of the weekend. We don't really get to go out together as baby sitting is down to my parents only. Our lifesaver is I believe, a stupid sense of humour to laugh at the trivial. We both have so many fears for the future that we have given up planning. All we are trying to work on is every day security and consistency. I had a parenting advisor in a few years ago who gave me advice and when I asked how my other two children could be a part of the programme too she couldn't advise me how I could split myself in 3!!!

So with all that stuff going on how does a marriage survive?

I read a post on fb today about a couple who had been guarantors on their adult child's flat trying to help him have a home and he had trashed it leaving them struggling to sort it. I hear families who are investigated by social services as their child's behaviour is apparently due to their failures. Husbands and wives are driven to breaking point, when a little understanding and support could have saved this.

How does a marriage survive?

I've no idea!

(but I think a bottle of wine and him doing the ironing on a weekend helps!)

Wednesday, 15 January 2014

Private Diagnosis..... How can it be Ignored?

Pathological Demand avoidance is apparently still an emerging concept, for us who live with it has readily emerged and is literally slapping us in the face on a daily basis! The problem is many of those working in direct contact with our children either haven't heard of it or know very little about it.

This lack of awareness makes it very difficult for us parents. Children who present with PDA are challenging and it is easy to see the behaviour with out seeing the underlying struggles. So many of us parents have been on parenting courses, despite the fact we are successfully raising other incredibly well balanced children ( in fact more well balanced than most as they live with PDA sibling). I believe it is true that you do not get to see many of the more "recognised autistic traits" until you have the PDA under control with behaviour management. Which is why to most behavioural difficulties is the first and only concern. What us PDA parents know is that typical behavioural management wont work and the Autistic related difficulties underneath will remain unseen and undiagnosed.

I am sure it is true for many parents that when we first heard about PDA it was literally a "eureka" moment. For the first time we had discovered something that truly represented our child. For us Isaac was diagnosed with aspergers and ADHD, as had our eldest son a few years before. In our naivety we expressed how different two children could be with the same diagnosis. What we know now is that this diagnosis is totally incorrect for Isaac. So as Isaac was traumatically failing in mainstream a SALT mentioned PDA, I read up and I knew from that instant that was him. BUT I was a damaged parent who had my parenting, life and family looked at by many who thought they could teach me how, with a bit more effort I could sort this child out. I mentioned PDA to other professionals in meetings, non of them had heard of it and I was literally told, there there love don't fixate on something that is unlikely. The anger I still feel towards these people is massive but I do intend to go back to each one of them with information in the run up to the next PDA awareness day ! As a result I was reluctant to put my head above the parapet and shout about PDA as it was not "professionally diagnosed". Last PDA awareness day I struggled to put the PDA aware logo on my personal facebook page as I was paranoid of looking like a Munchausen mum!!!!! this year we are still unofficially diagnosed but I damn well know what we are and I damn well know what "they" don't!!!!

So coming back to diagnosis....... still not got it....yet!!! What I have now got is agreed funding from the clinical commissioning groups to fund a diagnosis at the Elizabeth Newson Centre in Nottingham. I was refused first time round but I wrote a long essay on PDA and related it to many aspects of Isaacs life and struggles and the second time of asking they have agreed to fund the private diagnosis. I don't know if it will be PDA but if it isn't I will run naked through Hull with chip spice tied to me (its a Hull thing!!)

So two days ago I had an apt with a psychiatrist from CAHMS re Isaac. I don't take Isaac as it is too stressful for him. It is actually regarding medication but as Isaac doesn't currently take any it is a bit of a waste of time! Isaac has been on the emergency psychology waiting list for over a year and has not yet got an appt. In a much appreciated frank expression from the Dr he said he doubted if CAMHS would even exist very soon as he thought caseloads would be outsourced to private companies and during the disintegration he had no idea where this left Isaac on the list to be seen. I asked the Dr if he knew much about PDA and he said no, as it was not recognised in their assessment criteria.  I then explained to him from a parenting perspective the management differences between aspergers and PDA. I stressed that a diagnosis of high functioning autism was a spectrum within itself required totally different and specific management. Now I had the confidence to tell him that I strongly believed my child had PDA and I did not feel like a paranoid neurotic mother doing so! I did not mention to him that I had CCG funding to Elizabeth Newson Centre but he suggested to me that I could look for a private diagnosis. I then asked him that if CAMHS did not see PDA as a diagnosis what good would my private diagnosis be? At this point he shrugged his shoulders and said he did not know!!

So the CCG are funding a private diagnosis as they see it is in the best interests of my child but when I take the trust funded private diagnosis back to the trust they wont recognise or act upon it. Errrrm, is it just me or does this not add up???? 

I now realise I have some questions to take back to my Trust and with the forth coming PDA awareness day I feel ever more empowered to do this. Seriously, we really need to stop this miscommunication and all sing from the same hymn sheet. Come on PDA awareness... lets bring it on!!!!
   

Monday, 6 January 2014

Living with "Final Destination"!!

Have you ever seen the films "Final Destination"? I think now there are about five of them. If not, in brief it is about a group of people who escape death because one of them sees a vision of their demise and takes evasive action to save them all. The only thing is Death now is cheated of what it should have had, so one by one the group meet their inevitable fate in a wide variety of cringe worthy ways!

The thing with Final Destination is that there is no killer, the killer comes in the form of death, or in fact, life itself. The ease of incident that the film portrays serves to highlight our own mortality. The bizarre deaths at the hands of everyday items are uneasily funny when you are watching the films but may be not so much afterwards when you are driving behind the lorry that is carrying logs or flammable liquids or when you go over that bridge over the river. Not when that car passes you too close and too fast or when you realise that oven glove was just a little too close to that gas ring! Suddenly, nothing is safe, nothing is under control. The everyday world suddenly seems suddenly very frightening and unpredictable.

This may be quite a macabre introduction but I want to explain a little more about why I have mentioned this. My husband and I have joked between ourselves that safeguarding Isaac is like trying to predict the most unpredictable scenario that could happen, as in Final Destination, then trying to protect against it. When you have an impulsive child that does not see danger you are on constant alert and can see dangers that no other parent would even dream of. Occasionally he throws us a curve ball that even we didn't see, such as getting trapped in a bathroom display unit in B&Q but I am sure we have avoided many more scenarios by possibly predicting the bowling ball will roll off the shelf, that will hit the cat, that will turn on the radio that will play the song he likes that will stop him jumping out of the window. Far fetched, but I hope you understand what I mean!

This has led me then to consider Isaac and the anxiety he faces all the time. Learning about PDA has been a vitally important step for me. It enabled me to see that his behaviour was driven by something, it wasn't just him being "naughty". I have tried to put myself in his position and the closest I can get is thinking how Final Destination makes me feel! I need to hide my eyes and hope that this will stop what I fear will happen from happening, I want to hide and not look. I WANT TO AVOID. If I don't participate I could may be protect myself from what I fear, from what is out of my control, from I cant cope with.

With age Isaac's fears and anxieties are growing. We love rock climbing, the outdoors and physical challenges, we are seeing Isaac's ability to participate in these decrease as his fears increase. He is also at times able to verbalise these to me. We were walking across a bridge over a river a few weeks ago and he expressed he was scared as he felt the wind might blow his cardigan off his back into the water and this was making his heart go fast. In the summer when we went on holiday on a ferry he got really distressed just at the fear of the whole experience and verbalised that he wanted to jump off the side then it would all be over. After that we kept him in the cabin and played endless films on the lap top. He then totally panicked in the middle of the night as he could see a "red eyed spider", once we had turned the stand by light off the television and he had got into bed with me he was much more settled (I did pass the night with him lying on my head but hey ho!).

I am really trying to see the world from the PDA perspective. I have sat thinking about fatalism, pre determinism and determinism, all which are perspectives about how the future unfurls. It is mind blowing psychology and I am not sure where I sit but what ever I think I know  I am not paddling like mad to be in control. I can cope, but I see how the PDA child can't. Just as I watch the film and I hide my eyes like it will protect me....so does my son. BUT for him it isn't a film, it is his life. During 2013, with the failure of mainstream education, Isaac virtually withdrew from life and is currently making steps to reintegrate, but it is difficult. Today, as a treat before school restarts tomorrow, Isaac, myself and his brother and sister thought it would be good to go into town and have lunch at our favourite cafĂ© (hudl, I pod and Nintendo in bag). In the multi story car park I parked in the spot to have my car cleaned and handed over my car keys to the guy. When Isaac saw this he tried to punch the guy and get the keys back. Horrified in the moment but on reflection, Isaac cant even bare to throw away an empty shower gel container (he has a stash under his bed that I carefully filter out as time goes by) so why would I give the keys to "Bruce" ( our car) to a stranger!

I cant protect Isaac and his fears from crossing a bridge or from getting the car cleaned but what I can do is to try and understand how he really feels. I cant always shield him either, he does need to be exposed to fears to help him see how he can cope. What I can do is keep him in my head how fear makes me feel, to help me understand him.




Tuesday, 22 October 2013

A Weighty Issue!

We have a new issue to tackle..... Isaac is putting on weight!!! He is far from being fat but has got a little chunkier than his usual form

This might not sound a big issue in amongst all the other stuff that is going on but it is a concern.

We are having to look at two areas in his life, that of exercise and his craving of sweet things.

It is over a year now since Isaac was a participant in mainstream education. He was never able to participate in play ground sports such as football but he was going out to run around in the play ground 3 times a day. To some extent he was still doing PE lessons although how much he participated was extremely variable. In the 6 months he was out of school I tried to keep him active with biking, swimming, ice skating, rock climbing and walks again the amount was related to the coping ability of the day. He now attends a small independent special school so the structure and nature of the children means he is not running outside 3 times a day. All the way through the summer whilst his peers are free playing out in the streets he has been at home. He has some friends over, they play on the trampoline but the exercise level is not as free and consistent as those playing out. He is strongly attracted to the pc and playing on minecraft, I take him away and we do activities but he quickly gravitates back when these have finished. He has very little ability to entertain himself and if not on the pc he roams around looking for others to wind up and quickly ends up demanding my full attention to sort out what ever it is he has started. So minecraft is companionship and entertainment for Isaac and a peace keeper and baby sitter for me. Resulting in him spending far more time on it than I would like. The end product of all of this is an inactive child putting on some weight. I am trying really hard to address some of these issues such as regular exercise but his life remains more sedentary than most 9 year olds. I have searched high and low but can not find any activity groups that are suitable for Isaac. We tried a group for disabled children but it really wasn't equipped for a child with such behavioural needs, they catered more for the physically disabled. All his activity is done with a parent, this is getting boring for a 9 year old and keeping him engaged with the same old faces gets a bit boring! Again a child like Isaac has no where to go to meet his social and physical needs and I can see the complications for the future mounting.

The other area we are addressing is Isaac's ceaseless craving for sugar. He is massively motivated by sweets and sugar and if allowed would eat massive amounts. In a year of such change I have at times used sweets as little rewards when he has had small triumphs like most parents but I am now substituting this with other things. The difficulty is hiding anything with sugar in in the house! I often find things such as empty jelly packets hidden under his bed and any sweets have to be securely hidden or they disappear. I have been trying to ensure he eats foods that give him prolonged energy rather than peaks and troughs but he still has that constant desire for sugar. Compared to many ASD kids Isaac eats a wide variety of foods and does eat a balanced diet, I hope with the prolonged sugar reduction the cravings may start to reduce. I have read that many other children like Isaac crave sugar or for some refined carbohydrates and it makes be wonder what do they feel that the sugar imput is such a strong motivator for them.

Isaac has so many issues to face as he develops that I do not want the potential of gaining weight to add to this. Another challenge faces us!!!

Now I have to finish this as his pc time is up and he is literally jumping on my head, does that count as 5 mins of exercise?????




Tuesday, 1 October 2013

The Future....... The Great Unknown

A conversation with a friend this week has led me to dwell on my fears for the future more than usual. This friend along with a couple of other ladies had started a local ADHD support group about 6 years ago (PDA was unknown at this time but ticks a lot of boxes). Their children were in secondary school and facing the multitude of difficulties that "these children" do. These mums were pro active, they gave up their time to support others, they organised study days, they fund raised, they got together professionals and parents, they sat on multi disciplinary panels and met with M.P.s . Their vision was to enlighten and create a positive for their children. Today 1 child is in a secure unit, 1 is in prison and 1 is failing to function and cope with an adult life.

Scared????? I am!!

Isaac is going to be 9 in one week. Behaviour that was deemed acceptable from a 5 year old is now very unacceptable from a 9 year old. The only thing is ...... he isn't aware of this! His social functioning is grossly impaired. His language ability is far beyond his years. He does not recognise any other adults, apart from myself and his dad, as authority figures and does not differentiate that adults should be spoken to differently from a peer. In many situations he could be seen as a really rude, uncontrolled child. On the flip side as he does not see adults as authority he speaks to them in a way that most children wouldn't. He can be engaging and so amusing due to his excellent sense of humour. Many a time when out and about strangers have commented how intelligent, engaging and entertaining he is.

This is what makes this disability so hard for most to understand. He is intelligent, he is verbal, then surely he must know how to behave. He doesn't.

As PDA is only just coming into recognition there is very little information out there about its development in an individual as they go from child to adult. If I could know just one thing about the future it would be to see if Isaac will develop a sense of ownership over his behaviour and actions. To see this happen would be a massive relief as it is this lack of ownership that creates a great many problems. Isaac only ever sees his behaviour as a response to something that someone else has done, therefore it is their fault he is behaving like that and not his. Well that wont stand up in a court of law will it! The anger he feels in a situation can rocket in an instant as he fights to feel in control of the situation. Yesterday I tried to move his enormously large sports direct mug that is used about twice a year to make way for a teapot. He was furious and there was no way that mug was moving. I tried reasoning but I don't think any thing I said was acknowledged. He tried to gain authority by telling me how things would be and I couldn't change and if I tried he would smash the cups in the cupboard. He looked at the knife rack and he said he wanted to stab me but made no move towards the knife. He did get my hand and try to dig his nails into a poorly finger I have. I see an amazing amount of frustration and anger and the anxiety to be in control erupt. He tells me it is my fault and in that situation I did something he didn't like. BUT that is life, people constantly do things we don't like but we have the ability of reasonable control. How do you survive if you cant moderate and apply the brakes. How on earth can you function as an adult. As he was showering me with hugs later that afternoon I mentioned what he had said about stabbing and he said he was very sorry and he never meant it. The difficulty is in the moment he is so focused on his need to control at any cost consequence pays no part in his actions and attempts to get cooperation or compromise fail.

The future is a long way away and we are working hard all the time to take steps in the right direction. I just wish I could draw comfort from somewhere that it will all be ok, but there is non to be had.



Wednesday, 25 September 2013

It really isn't my fault!

So much has happened and I have had so little time to document our experiences over the summer and our return to school. Some have been great, some less so but I do intend to blog about them sometime soon. I have just been making a cup of tea whilst Isaac is in the bath and his amazing sister is sat at the side using her gargantuan imagination to keep him absorbed in a game. My thoughts were lazily examining why I felt more positive about things than I had done in quite a while. Things are far from peachy, I have had two days of absolute school refusal, days when I have had to physically remove him and carry him into school after spending ages trying to empower him to make the right choice. I have the constant imput required to get through any simple activity, so why do I feel more positive??? I have concluded that it is because SCHOOL DONT BLAME ME FOR HIS BEHAVIOUR!!!! As simple as that ! They see he actually has a disability and try to tackle it , they don't think it is my fault! There have been many well meaning professionals that we have encountered along the way who totally just have no idea about what they are advising about. We have had some corkers come from some "professionals". When Isaac was 3 and really not managing a few hours of play group we where advised that omega 3 would resolve all our problems. In year 1 of primary school the head asked me not to put jelly in his pack up as this should then sort out his problems!! I have been on 3 parenting courses and have concluded " you cannot sticker chart autism out of the child"! My eldest has aspergers but despite the odd blip, does very well, my daughter, the middle child is an amazingly polite, intelligent, empathetic child. This leads me to wonder why do outsiders think I have chosen to screw up up one child? The answer is..... It's not my fault!! He has a disability that has not even been diagnosed properly yet. I know what he is and what he has, I am just waiting for the professionals to get him up their waiting list high enough to actually see him, then to spend time seeing who he is. In a recent school review, (after he had tried to climb out of an upstairs window that morning), it was summerised that "he didn't trust adults". No shit Sherlock..... He has been let down so badly why the hell should he. So in this tiny special school, they don't blame me. They are going out of their way to build his trust and earn his cooperation. They don't think I can tell him to behave and he will. It is a rollercoaster but the good times are outweighing the bad and progress is being made. We are a million miles from perfect, but acceptance of the child as he is, is the building block to the future. It's not my fault, it's not my parenting, he has disabilities.

Monday, 29 July 2013

At Last...... The Truth

I haven't blogged for a while, life has been busy but we are now on the school summer holidays. So Isaac was in his new school for a few weeks before the holidays, and they have been quite a roller coaster. At times it has taken up to an hour to even get him out of the car at school. We have had good days and bad. I got a report that I had asked for from school  a few days before the end of term and it was the first report that I have ever had that has actually reflected the Isaac that I know! Reports from main stream school never came close to describing what we knew about Iz. They were always lacking in understanding about him.... but this report laid it out there. Was it the quality and understanding of the teacher that made the accurate assessment, or was it because the report was now coming from a little independent B.E.S.D. school that didn't camouflage the true depth of Isaac's behaviours in order to try and cover up the fact that they couldn't cope?

For me this report was a hallelujah moment.... others were seeing my child as I did. It starts:
" In the short time that Isaac has been with us at --------- School we have noticed and dealt with a number of different and difficult behaviours, the centre of all being Isaac's focus on gaining control over every situation and every  adult he comes into contact with"

It continues
" If Isaac doesn't think he has gained control of a situation, his behaviour will escalate very quickly and he will become very aggressive by kicking, hitting, nipping, scratching, biting, head butting ad destroying property. Whilst there are some triggers for his aggressive behaviour, such as lack of control, at other times there are no apparent triggers for his change in behaviour and attitude and they can escape extremely quickly".

"Isaac has a lack of understanding of rules and boundaries and authority and believes that he doesn't have to follow the school rules and therefore believes he can do what he wants and that he doesn't have to listen to adults."

"When Isaac's behaviour escalates he will not take any responsibility for his actions and blames other people for his behaviour, believing that they have made him act that way and that it I not his fault".

There is much more but it concludes
" Isaac is very confident interacting with adults, stating that he doesn't need to follow adult instructions. However, Isaac is quite shy in a group situation with peers, and is very reluctant to interact with his peers, often choosing to be on his own rather than interact . When Isaac does interact with peers he can become confrontational and competitive as he tries to gain control over the situations and this can often cause conflict with his peers"

Yes.... Yes ....Yes..... this is him, this is what we are dealing with. This is him in every aspect of his life. He presents the same at school as at home.
I often think it is to our detriment that we cope so well as a family. It is testament to our stable and consistent and loving environment and our sheer determination to help him in every possible way that we have developed a child with his disabilities that can cope this well. I seek help from services and are consistently turned away and refused as they continue to be blind to his disabilities and needs.

Jeez.... we are not making this stuff up... at last I have a report from someone who is on the front line with him who seems to have an understanding

The lack of understanding and knowledge it catastrophically significant. Come on HCP's, read, learn and start making a difference.

Sunday, 23 June 2013

How will we survive the summer holidays?

It's four weeks to the summer holidays and my feelings of dread are mounting. I hear parents complaining about this, but then I see their children playing out in our village streets and green areas from dawn till dusk, on bikes playing foot ball, having a childhood.
My son is at home.
I can't let him out. 
He isn't safe.
Isaac is now 8 3/4, and he can not go out of my sight. We have tried as he has grown letting him to the green 1 house away from ours, we have tried letting him cycle up the street with his sister, every episode ends with an issue. He has stolen, damaged property and hurt people. All children of his age around us all go to the school he used to go to. Some of them enjoy Isaac's company but when Isaac meets up with them he has a lot of anxiety sound the fact he now goes to a "different" school and struggles to integrate. Often the children are in groups and he can't cope with that so often gets aggressive. If he does manage to play for a bit the children usually then end up going out of Isaac's very small boundaries and he can't follow that results in a very cross and upset boy.
Last time he went biking up the road with his sister there was an incident when he stopped to see some children he knew, he stopped his bike in the middle of their football game and they told him to move. This situation deteriorated into shouting and Isaac responding with swearing and picking up a stick. A dad then got involved and told Isaac he was filming him to show the police, well you can imagine his response! My brave 11 year old daughter stood between this man and Isaac to try and help him, she later said she wanted to get me but she daren't leave Isaac. This was just feet away from our house. The first I knew was when the two children flew through the door with a shouting man at their heels. 
He does have a couple of friends but they come to our house. He still has his best friend from school but he is not close enough to see on a regular basis. He is a child who is an absolute gift. He genuinely loves Isaac as a friend. He has empathy and acceptance way beyond his years but he seems to like Isaacs truly entertaining nature. The other is a neighbour who is a few years older but has an amazing affinity with Isaac. The spend hours drop kicking each other on the trampoline but when Isaac oversteps the mark this boy lets him know and Isaac values this friendship so highly he is one of only a very few sources Isaac will actually accept direction from. 
So I have to keep him in the boundaries of the garden whilst his peers run up and down the street until sun down. 
He is nearly 9, how long can I keep this up? I do my best to take him out and keep him entertained but I also have two other children and they need time at home to go out and socialise with their friends. 
We do not live in a prison, it only takes a few seconds for him to be out of the door or over the gate. A few weeks ago I visited the local police station with Isaac so when this happens everyone is aware and knows what to do.
I feel so sad, I spent my whole childhood outside with friends. He wants to go but I can't let him.
How will I manage him when he is 12, or 14 or 16?
What happens when he is an adult?
I am scared.

Thursday, 13 June 2013

Superimposing a PDA Child On "Normality"!

I have a photograph of Isaac that embodies my PDA childs' struggle with life. It was taken when he was 4 years old at the play group he used to attend 2 mornings a week. They had individual photos taken which eventually after a lot of effort he let them do but that was enough, there was no way he was going to join the group shot. When the pictures came back the photographer had superimposed his individual shot onto the group picture to make it look like he was there. Looking carefully you could see that he was ever so slightly out of proportion, making him appear a little larger than the rest of the children. They tried to make him normal but no matter what he didn't quite fit. This is also what happened with his mainstream education, they tried to get him to fit into "normal schooling" but he didnt fit. He was superimposed onto his education, he wasnt an active part. Not suprising it failed, efforts were made to put coping stratergies in place but they were all efforts to make him fit the normal, to support him in the normal. It was only with time i realised he needed the "different" for him to stand any chance of being him. The true him with all his behaviours, only then would he stand any chance of developing himself.
Isaac was at home, out of school for 6 months. I had joined home educating groups on facebook and became interested in what they called "deschooling". They describe it as the period where the home educated child lets go and adjusts from school life and becomes ready to engage in their new style of education. As a rough guide they say one month for every year the child has been in school does it take to shed the skin. I was intitially quite dismissive of  this but then I saw it in action. I saw how the reduction in demands and pressure, how the release of routine did more for Isaac's personal development than a year of school. I did not intend for him to be out of school for this period and at the time I worried significantly about his lack of education but I can now conclude it was the best thing that could have happened.
Isaac is now slowly reintergrating into a highly individualised school setting. His school life is being tailored to him, not him to the school life. I want him to live his school life not survive it.
I am now very aware that I will not let Isaac be superimposed on his life again. Its his life and he deserves to live it.


Monday, 10 June 2013

Empathy..... Have I been a Help or Hinderance?

I have read a really excellent blog tonight that has sent my mind reeling. It is a guest blog written by Jude Seaward, a learning disabilities nurse and behavioural therapist, on Jane Sherwin's blog site. It can be read at http://shiggs55.wordpress.com/2013/06/08/does-pda-live-in-the-lost-city-of-empathy/

 Here are 3 hard hitting points that Jude writes that really stood out for me as a mum living with a PDA child:

 "If a child is manipulative, where have they learnt this from, they have learnt it from the reactions of adults (they covert what they see)".

"Due to the child with PDA often mimicking others they will often use the techniques that adults use. In short they will turn the tables and use our own techniques back on us."

"Because as adults, we recognise the pressure that the child is trying to exert on us we ourselves try to regain control and exert our own values on the child."


In the last 7 months that I have I have been aware of PDA my learning curve has been almost vertical. Previously I was aware of stratergies that had more effect with Isaac but I was not understanding why. With learning I have improved on this and things have become (ever so slightly) easier, but Judes' words really made me think. Although i do try not to put the pressure on I am being manipulative..... at times i try to ensure he makes the choice so I am not applying pressure but I am realising frequently the choices I am presenting are actually " Hobsons' Choices" so are they really choices at all??? and so.... why am I suprised to see an ingenious level of manipulation coming right back at me!!!

On to the second point : I laughed when i read this! I suddenly realised how many times Isaac gives me two options of what he will do! Only today he said " I will only go into school if the lap tops are working or if I get 10 mint imperials on the way home! Ha ha ha .... there is my well meaning choices right back at me!!!!

Point three, i feel is one of the biggest hurdles/problems to PDA parents. This is were a lot of pressure comes from external sources. Our society, our up bringing, the numerous parenting courses we have had to attend, all tell us about the need for "control" and this is where so many problems stem from. The book "The Explosive Child" by Ross .W. Greene has really enhanced my understanding of this (if you have an interest in PDA and havent read this book please do!) he made me understand that my view of parenting fitted into his description of "plan A" when actually for Isaac I needed to get in a bit of "plan C" then work back up to "plan B". To sumise this basically means telling him I understand what he is saying rather than just demanding compliance (very rough summary).

All of Judes' points add up to me masking my true feelings to get compliance. I have previously written that I have needed to keep my emotion out of dealing with Isaac as I have felt he has reacted more volitile when i have displayed my emotion but have I done him a disservice????? and this is where my head is spinning now. Has my impassive face that i used to hide my fury, my sadness, my annoyance, my happiness in order to get him to do my bidding actually hindered his understanding? Have I actively hindered his development of empathy..... I am thinking yes!

I think it is time for me to start expressing and explaining my emotions. He needs to learn I am not impassive but that I feel. Then together we can start to be more honest with each other. Its time for change!

Friday, 31 May 2013

The Mental Health of Mums.... Just how Mental Do We Need To Get?????

I would love to know some statistics around having a child with PDAand the emotional wellbeing of their mothers. I can only imagine it would make for quite grim reading. Every mums experience is different but these are some of the issues I have personally experienced. I do jokingly refer to myself as mental mother but this is in reference to how the daily stress I experience makes me feel.
The most obvious and wearing issue that mental mother has to face is just plain dealing with the everyday behaviour of a PDA child, even just a "relaxed" day at home results in many behavioural management issues. I really dont think you can really understand the extent of this until you have really lived with it. Even on the days you consider to have been "good" days a high level of opposition and behavioural management  will have been used. "Good" may mean that really tough behaviours may have been less today. Our "good" days would probably considered by "normal" parents as catastrophic disaster that they would never wish to repeat. I never really talk to "normal" parents about Isaac's behaviour as I couldn't begin to explain the depth. Intolerant of me I know but I can't stand the misguided empathy "yes, little Jonny doesn't like getting dressed either". Mental mother doesn't  follow that with a "but does he try to throw a chair at your head when you ask him?" Its just too much, they can't appreciate I now have to diffuse the anger that has led up to the flying chair. I have to be neither cross nor emotional as any emotion can add fuel to his fire and prolong the episode. Whilst doing this I am also subtly reinforcing that this isn't an acceptable behaviour. Eventually after a while (good day 5 mins/ bad day 2 hours) the chair may be down the child may have calmed BUT is still undressed. Now the point of dressing needs to be readdressed. Which management strategy shall I use this time? a friendly race, a reward, bribery, a demand all of these will be employed at sometime depending on the mood. Dressing can take half a day or may be a two second job, how do you build that into your daily routine? Chances are if you need to be somewhere the stressors will have been picked up by the child and he will choose the prolonged dressing option.
So that is a little taste of what can happen around one simple (for us) everyday demand. Faced with this reaction to most things most days, can you begin to see how wearing it is? So how can we relax? a family meal out??? Well that is fraught with difficulties. Once you have considered has it got a play area but one that isn't too busy as he is likely to hit someone, have we packed ear defenders and a full "in handbag entertainment kit", and  can they get the food on the table in under 15 mins or he will be on ceiling, it kind of takes the spontaneity out of it.
So why not get a babysitter and go out without the kids?? Well we cant just get the 16 year old from up the street, a PDA child can sniff out authoritative weakness as easily as a lion can smell its prey. This would be unfair and unsafe for all concerned. It has to be someone very well known to the child. Grandparents can still do it but it has to be a totally demand free night, I cant ask them on a school night anymore as he just plain refuses to go to bed for anyone else. He can also be violent and is it fair to ask anyone else to face that?
So lets have a family holiday? Ha ha ha, I wont even go into that, my children have not yet been on a plane as we know we would not be able to get him through the whole ordeal of plane travel although we do tackle car journeys to nearby Europe.
On top of the everyday stuff we have the issue of education (or lack of it). Mismanagement by countless "professionals" resulting in horrendous experiences for the child which results in more "behaviour" but on top you get an added helping of "blame" thrown your way for your parenting skills as this child obviously has no boundaries (despite the fact older sis is a dream child and model pupil at said same school). Then there is the fighting of the education authorities to help, which they don't. Mental mother then has to put a massive amount of time and energy into unhelpful, uniformed, disjointed departments trying to find some help for her child. which is usually woefully inadequate.
BUT WHY CAN'T MENTAL MOTHER GET THE RIGHT HELP FROM EDUCATION??? I suspect this is because THE CHILD HASN'T BEEN PROPERLY DIAGNOSED YET because MENTAL MOTHER IS ALSO FIGHTING THE MEDICAL AND SOCIAL SYSTEM FOR AN ACCURATE DIAGNOSIS NOT A ROUGH BOX TICKING DIAGNOSIS.
Yes mental mothers across the land will have filing cabinets of letters and reports about their child, most of which are inaccurate, inconsistent and quiet frankly a waste of a perfectly good rain forest. We are having to fight all of these people who are supposed to be there to help the vulnerable child because they do not understand how this vulnerable child is presenting. I have had so many appointments with many different people over the years that I have now developed two "trigger phrases" they are "PARENTING COURSE" and "STICKER CHART" I swear if these phrases are ever uttered again mental mother may not be responsible for her action!!!!!
This is a very disjointed rambling way of looking at what is simmering away in my daily life but I am trying to give an impression of the everyday roundabout PDA parents face with no way to even have a break from the ride, it is perpetual and endless. Even the sanity of my work life is severely curtailed, I can now only work on a week end when the other half is home, this upsets me as I really do love my job. At times I have felt very down maybe depressed although I have never sought medication. I have cried endless tears out of frustration, exhaustion and the sheer weight of the situation. I have drunk too much wine on many occasions to help lessen that feeling of pressure for a while. I read about many mums who are in a similar situation and those who feel much worse. Some have sat looking at the pills so desperate, exhausted, unsupported and let down that they cannot see a way to the future.
So again I ask" how mental do we need to get?"...... because I think a lot of us are already there.

Wednesday, 29 May 2013

An Enjoyable Day out (!!!!)

Today we have had an enjoyable day out, myself and the three children but why am I sitting here totally exhausted? Well what goes into a PDA day out????? One heck of a lot of effort thats what!!!!!
I had planned a trip on a train as it was going to be a rainy day so I was aware this would require a number of hours of preparation!! As i suggested what we could do the initial reaction was "NO" we cant do that (faced with a new situation), the reasons included: I cant get wet, my shoes don't fit, I need to go back to bed and the train may crash and I dont want to die" I am aware I have landed a significant challenge at his door and his last excuse lets me see some of what is racing through his mind of what he thinks the day will hold for him.
Isaac gets dressed in clothes chosen for their "extra" comfortable quality to make sure there is no rubbing and wrong feelings during the day. I feed him 30 mins prior to leaving so the feelings of hunger dont upset him and come out in "behaviour" rather than him just saying he is hungry. The bag is packed with the ear defenders, an I pod and a book for travelling entertainment. The Aspie older brother is obsessional about rail travel, trains, what companies run what services so as we wait at the station his brothers nervous excitment starts to rub off so I have one pacing and one running in circles. Im getting looks from others on the platform but... whatever!!! I have to interact constantly on the train to keep things going ok. I see another child sitting, entertaining himself with a toy.... that doesnt happen with us. A very kind gentleman in  the seat behind lets Isaac film him then use an app that makes it look like a missile lands on him and blows him up. Older brother continues to be very twitchy and wants to stand/ walk/ go to the loo and I have to work hard to keep each child where I want them and happy at the same time!
We have an issue going through the ticket barriers as we leave the station as the barrier kept the ticket and he was attatched to that ticket and wants it back but after a few mins we get over that.
Next we have to walk 10 mins in the rain to get to  our destination, he doesnt like this so tries to divert with a request for food. I accept this and dive into a bakers and buy sausage rolls. On trying to leave the shop he starts to kick off saying he wanted pizza instead. I say its sausage rolls or nothing, he refuses to move. I place no demands and just wait him out, after 10 mins he has let go of the pizza thing and tells me how much he loves this sausage roll (!!) We make it to the Royal Amouries, Isaac and older brother literally nearly have a punch up over who presses the buttons in the lift. As soon as we get out of the lift Isaac disappears and I find him sitting in one of the exhibits. He then proceeds to carry round one of the stools that people can use to sit and read the exhibits, I dont stop him as I see this will cause more harm than good. Elder two children now go off on their own (this is a shame as middle girl wants to read and learn and talk but I have to sacrifice this in an attempt to keep our time there going). He likes to wander rather than look at any exhibits so we really spend our time just walking. There are so many things to look at and investigate but nothing seems to hook him in. He now wants to leave. I find a way to entertain him whilst we wait for eldest son who has just realised that his prized starbucks card has fallen out of his pocket and he runs round the whole place trying to find it.
We now have to walk back through the rain to catch the train, he starts to say he cant walk anymore but I use sweets as a bribe to get him there. He looks so cute with the rain dribbling off his Viking Helmet he is now wearing.
We get to the station, we get the sweets, I now have to count down the 8 mins until the train comes. On the train he is really relaxed and this washes over me with relief. He challenges sis and bro to make him laugh, sis leans over and says " poo"..... he laughs a gutteral laugh for 5 mins that makes us all snigger. I have a few issues with the boys and the sensor door as we travel for 40 mins but we get home ok.
Today took a lot of effort, a PDA mum is hyper aware of what is going on, from noise to expectation, to smell, to touch. But it was worth it, I dont think a day out can be much more successful than that. Yes inside i felt at times stressed and frustrated but knowing about PDA and how i should react has helped me 100%, and this is why we all need to spread  the word. When I know what to expect and what I can manage it makes me all the stronger to ignore the looks and comments from others as I let some behaviour slide. I have just heard middle girl say that she has really enjoyed today...... result!!!! I only wish the effort it takes to manage a PDA child would actually burn off calories, as I would be a PDA Twiggy!!!;-)

Wednesday, 22 May 2013

PDA and Educational Achievement

As parents of PDA kids i feel that we are aware that they are educationally going to chronically under achieve. "You can lead a horse to water but you can't make it drink" i think sums up how many teachers view PDA children. I know that Isaac's IQ is high, as a mum of three i see how amazing some of his abilities are and yet he is a child who has not been engaged in effective education for over a year. Kids love to suceed, they love to get it right but it has been striking for me how this desire doesnt strike Isaaac (in the conventional way). A few months ago Isaac had to go for more "ability tesing" I cant remember its formal name. It failed in the first 30 seconds when they guy expected Isaac to go off to a room with him without me.... I visably saw the shutters come down. So we all went into the room and proceeded to try and get Isaac to engage in his "puzzles" . Isaac responded with " if you are so clever you do it". The guy asked me for help so I did the puzzle wrong and then played up to how great I was as I had done it. Isaac cast half an eye from under his hood and said "epic fail" and corrected the puzzle. The guy then gave him praise which Isaac totally hated so he put the puzzle back wrong and disappeared back under his hood, and that was the end of that. Isaac did not only know how to do the puzzles but he knew how to do them wrong! The recognition of getting it right either meant nothing too him or the praise he recieved was difficult for him to feel comfortable with. I have already spoken how his brain works in two ways at once. How he has told me he doesnt know the answer to a question and has given me an answer at the same time, it is like two different people in the same head. If education is a demand and you are demand avoidant how is it ever going to be "conventionally successful"... it isnt. Conformity is the key to educational success in the conventional qualification way, not intelligence and ability. Many children with PDA fail in mainstream education and it is not because they are not intelligent enough but it is the inability to cope with immense level of conformity require. Intelligence is needed to achieve in education but for a PDA child their intelligence is one of their most damaging qualities. Damaging because of the perception it gives the educational providers about the child's abilities. "Well he is clever enough, he should know better". "He isn't trying he is lazy". "He is just naughty, he won't sit down and the do work we want him to". It is very difficult for them to see the underlying issues and understand the disability present. The ensuing  mismanagement often results in children ending up for significant periods unsupported out of education or being placed in " special" schools that are not right for their needs. This is reported time and time again by parents. Information about PDA must be drip fed into schools and we can all help. The PDA resource website is an excellent way to open the window and we all know people we can inform to help spread the information, which in turn will help these children. Direct anyone you know including the milkman to http:// www.thepdaresource.com/
Education needs inclusion and nurture, unfortunately many PDA kids experience exclusion and blame. Its no wonder they grossly under achieve.

Sunday, 19 May 2013

A State of Two Minds

In the last 5 months that Isaac has been out of school and home with me I have really had a chance to witness how he can work in a state of two minds. The conflict that goes on within himself is so great it is visable. Officially, if you are from the authorities, I have absolutly not home educated my child for the last 5 months..... If you aren't.... well we have covered a lot of education ground, BUT with a mighty lot of conflict on the way. (Just a quick note to any of you who home educate your PDA child....wow you are totally amazing and have my upmost respect). I could mainly engage Isaac in school work because I had built it into our everyday routine. Isaac has become particularly writting avoidant and can easily give give you 101 reasons why he can't, won't or shouldn't put pen to paper but I was really struck one day when we I had created a treasure hunt for him using a code he had made. We had taken the alphabet and given each letter a number, I had then created a treasure hunt for him to follow around the house eg. a code clue he had to crack said " look where mum rests her feet" he then realised it was in the foot stool and when h looked he found the next clue he had to decode and follow. He absolutly loved it but I was really struck by the struggle I saw whilst he did it. He started by trying to guess the next clue without decifering but soon realised this stood no chance, so next he did a little decifering and tried to guess the rest, again no joy. He was liking solving it, his whole body langusge was involved but almost in an involuntary way he kept walking away from the table then bringing himself back. I think he had a massive internal struggle on. When he doesnt want to engage in learning be it through fear, or boredom or dislike he will be very verbal but because it was something challenging he wanted to do but also wasnt easy he really had to fight his inner avoidance desire to stay on track. On  Friday it was the last day ( hopefully) that i will ever have to homeschool Iz. He was cross and anxious, It was his care workers last day as he was about to start school (she was one of the few adults he has trusted since he left school.e became adament that because it was her last day he shouldnt have to work, I challenged this and off he went in a fit that involved kicking me, trying to ht me with a chair etc. As he was being physical I asked him a numeracy probem. He started to say " how the hell should i know....." then interupted himself with "12"! One part of the brain was busy pathologically avoiding, whilst the other half with who knows how much conciousness had worked it out.. How confusing must this be? what part of the brain can he listen to at the time, how can you deal with polar opposite thoughts at the same time? No wonder PDA kids melt doen.... I think I would!!!

Thursday, 16 May 2013

School Exclusion and the PDA Child

Is an exclusion from school an effective form of behavioural management and/or punishment for a PDA child.

The thought from me would be a big fat NO! In fact I believe that continued exclusion is incredibly damaging to a PDA child. I feel it creates more anxiety and therefore more behaviour in a child who ends up feeling more isolated and rejected from the educational environment. It feel it creates a cycle of expectation for the child. I feel i saw this cycle of expectation develop for Isaac during his last few months he was in school. When the exclusions started I had no awareness of PDA, therefore I had no idea what was driving Isaac. Initially I would chastise him, I couldn't understand why he had had this dramatic deterioration in his behaviour at shool (it was always an issue but it deteriorated rapidly). During this time he was exposed to an awful lot of negativity. From school he was getting more and more segregation and consequences as they tried to control him and make him conform. With hindsight and knowledge about PDA it is obvious how this pressure was becoming too much for him to handle and his anxiety and feeling of lack of control was sky high. To top the little mans day off he would come home and get chastised and banned off play stations etc by me as I sought "to teach him how to behave". How awful must this time have been for him. (He actually developed a repetitive eye movement tic at this point which after 5 months out of school has disappeared.) He was excluded for 5 days a fortnight before the christmas holidays, I sat in the heads office and asked why 5 days, I was realising that it didnt matter how long he was excluded for he wasnt going to sit at home and reflect on it and I believed he whenever he came back he would behave in the same manner because he was being mis managed. He was being exluded for the very reason he had a statement which was supposed to support him ( I believe it was 5 days so christmas dinners etc could be eaten without being disrupted by him but that is just my opinion). It was now i could really see the impact that the pressure and cycle of rejection was having on Isaac, he would come home and strip his uniform off and shower the smell of school of him. It would be followed by up to a couple of hours sat under a duvet being very withdrawn and dare I say it "depressed". I felt totally at a loss with what to do, and it was now that PDA was fleetingly mentioned by a Speach Therapist, I read up and it was as if suddenly everything made sense. I was now ready to help start the change. In a meeting after christmas with a large group of professionals involved with Isaac I spoke about PDA (the Speach Therapist who had mentioned it wasnt there and didn't submit a report). I started by asking who had heard of it, no one had from the ed psych to the specialist behaviour guy. I had lots of info and the teaching guidelines i had printed out but I was told by the chair of the meeting it was unlikely and not to get my hopes up and it was dismissed. I just wish I had the knowledge and confidence to speak about it then as I do now but it made me realise how the people who work "in the system" do not like to be challenged (something which has now become mine and Mr N's favourite pass time!) Isaac was now on a " 6 week reintergration plan " put into place by the behavioural team (who didnt know about PDA), he had his own room, he was totally isolated he would not go near any other children and would actively run to avoid contact with his class mates. He expressed once that he felt embarrassed about himself. Isaac managed to get excluded frequently still but I now spent the time trying to support him and prop up his shredded self esteem. The cycle of exclusion was now Isaac now not "misbehaving" because of the pressure he was under but simply that he wanted to be home. We spoke loudly about how damaging this exclusion was to our child but this was never heard despite me writing a long statement documenting all of this and giving it to all concerned. A documented submitted by the head to a meeting strongly tried to blame us as parents for the behaviour suggesting it was our lack of compliance with exclusion that was at the root of the issue and I quote "Both Mr and Mrs N did not agree with the exclusion process and did not engage with it. They had made it clear to the school staff and at the Team Around The Family meeting" YOU ARE DARN TOOTING WE DID!!!!!!!! The last week Isaac spent at the school he was getting excluded everyday, sometimes he would only last 15 mins. I dropped him off and said "see you at 12" "probably before because they will exclude me" he repied!
And that was the end of that. Isaac had learnt a lesson, he know knew how to protect himself in this environment, he was totally in charge of his schooling. I know Isaac would have dropped out of main stream at some point but the exclusions made it a very traumatic journey that no child should be submitted to.


Wednesday, 15 May 2013

"I just want to be normal"

" I just want to be normal" says the child.

 Ohhhh son, do you know I would give absolutley anything and everything I have ever had and ever could be to not have you go through what you do.

The worries about starting a new school on Monday are starting to build within Isaac. He has not had to conform to a school life for 5 months now and it is going to be quite a shock to the system. He is starting to hum absently to himself again and he is a little subdued, his Barnardos care worker has also noticed an increase in his anxiety. He doesnt like to talk to people  outside of the family about his new school as he knows it is different and i think he feels embarrassed about this. "I should just go back to my old school" he said. We have talked plenty of times before about why this wasnt working and how we are going to find a happier place but he still has no ability to understand this as he has no idea how wrong and inappropriate the "education" he was recieving was. "But why do I have to move is it my ADHD". I tried again to explain it was more to do with Aspergers and how this influences the way he functions. I feel he understands that better as his brother has Aspergers and he can see some of the problems he has, I didnt go anywhere near trying to explain PDA. I am trying to make him see it is not his fault, to try and give him confidence but the truth is the way he is compelled to behave is quite distressing for him. He doesnt want to be "naughty", he doesnt want to have to live with the constant anxiety he feels during his everyday life. His behaviour does result in a lot of  "consequences" as we try to address what inappropriate behaviour. He just always seems to have the odds stacked against him. I know he feels "sorry" for what he does, he is very sensitive, but he really cant help himself. I fear for what long term effect this will have on his mental health. I have learnt along time ago to take my emotional responses to his actions out completly, it is the PDA child reacting, not the other sweet boy that lives inside. I think in a way I am lucky I still see my lovely child quite a lot, I read other posts and blogs and hear parents who of almost or totally lost their inner child and only have the PDA child, my hat goes off and heart goes out to them. Once when he badly bit my arms as I tried to restrain him (school related) he couldnt bear to see the marks and pulled my sleaves down, it hurt him he had hurt me.
"why am I different" he asks. "I dont know" I reply " it is the way you were born, its what makes you you" I smile like a childrens TV presenter, I am trying to give him confidence and love. We are still driving and he looks out of the window for a bit..... and whispers..... " I wish I was normal"

Tuesday, 14 May 2013

A Duvet is NOT an Item of Clothing!!!!!!

" a duvet is not an item of clothing you know" often comes from me. As a boy dressed in pants jumps over his discarded clothes and disappears under under the covering he shouts "it is for me!!!. He will shuffle about in it like a human marshmallow, always naked except for pants. He will sit on the sofa with just his head poking out, "its just so snuggly" he tells me. Isaac's sensory issues are an area that I am only just starting to really recognise and i have absolutly no understanding of how he processes imput and what imact this has on a daily basis. He has some ear defenders that he likes to wear in noisy places such as a bowling alley, I can understand how noise can effect you, as a mum of three I at times "can't hear myself think", is this the same with Isaac with all his senses and if it is how much does this contribute to his hyperactivity and anxiety. There are only a few times he verbalises his distress and i wonder how bad it got for him to beable to do this. One was with a support worker in pre school, he wouldn't go near her. Eventually he said she smells bad, it turns out she was a smoker and was also heavy on the perfume to mask the smell. More recently, after a really traumatic morning at school resulting in him being restrained, he came home after being excluded and asked to shower and change to get the smell of school of him ( that was a stark slap in the face for me). (Restraint and the PDA child is something i will address in another blog as there in lies a massive can of worms.) Being naked in a duvet provides a soft, secure comfort, it helps the senses to relax. How can i begin to know how to provide a duvet of security for the other senses? Well that is just impossible, but I must try to consider the wider scenario when problems and melt downs occur and i may begin to learn something about the environment and its influence on him. Its an area that is almost impossible for us "neurotypicals" to understand but i here by declare "A DUVET IS AN ITEM OF CLOTHING!!!"

Monday, 13 May 2013

"Letting go of main stream"

A post on the PDA facebook page made me think deeply today. So deeply that whilst absent mindedly walking round Sainsburys I bought some oven cleaner, pfftttt, like that will ever get used! It was about the transition of a child out of mainstream schooling and into the "special needs sector". This is happening to me at the moment as my son starts at a "special" school on Monday. After a patchy history in pre school and key stage one where there were big problems but at times showed a flicker of being "normal" it all fell to pieces in KS 2. It was inevitable but was hastened by gross mismanagement by his school. I am repeatedly reading about part time time tables, children being schooled in corridors and segregated from their peers, excluded from school trips and basically failed by those who should be helping and to be honest.... it makes me cross!
As my child started to deteriorate a very good friend suggested specialist education and i honestly felt cross. I thought "what the hell are you talking about, my child is very clever he just needs a little help" At the time i was only seeing his intellect , i didnt have the ability, insight or knowledge to see this wasnt enough to carry him through. As things got worse, as he was attempted to be educated in the corridors on a part time timetable, as he ran from the teachers, as he hit them and got repeatedly excluded it slowly sank into my denying skull that this wasnt acceptable. BUT and here is the big problem....... no professionals involved with Isaac had the balls to suggest to me an alternative may be better. Isaac was excluded for 5 days the second to last week before christmas, at this point he had no contact with his peers, he wouldnt go near his class room and spent his 2 hours in school sat on a six foot wall manipulating teachers. WHY DID I NOT REMOVE HIM NOW??????? I kept him off for the last week before christmas to chill him out.... why the hell was i not listening to my actions... he really needed to be out of there. BUT after christmas he had the behavioural support team starting, so i sent him back, not realising it was far too late. They tried to implement a rigid "autistic spectrum" time table not realising that the weight of expectation was making this PDA child worse by the day. By week 4 he got excluded 4 days in a row when he was only in for potentially 2 hours... yes it was only now i got it, he never went back. So a week after this we sat in a "Team around the Family " meeting and was told by every professional present i must put my child back in school or I was breaking the law, that that school was the best place for him..... it was at that point my trust went. I had grasped at straws. I hoped the part time timetable would work. I hoped the nuturing curriculum would engage him. I wished it would work. It didnt. I sat with the behavioural guy one morning and challenged him that it wasnt going to work and he replied that his boss would shoot him if he said this but he didnt think so. HERE IN LIES THE PROBLEM... no one will tell you its time for an alternative. They would rather stick a child in the corridor and bleed his self esteem that admit they cant cope. So I am faced with "special needs" hmmm how do i feel???? To be honest I am still struggling and this is down to my predjudices ( not sure that is the right word). THIS WASNT WHAT I HAD PLANNED!!!! As a midwife i have had lots of training in what to do when faced in the moment with a birth abnormality, it is considered to be " the loss of the perfect child". Now i knew my child wasnt perfect (!!!!!!!!!) but moving him from the only way of childhood i knew to another has been really hard and it has been a grieving process. I am having to let go of my rigid perceptions of what i believe a childhood is and open it to one i have no idea about. Even now and i am thinking i am swapping his peers from "normal" kids to " not normal ones".... it may sound ignorant, uninformed or biggoted and i agree yes it may, but I am doing my best. I realised i desparatly grasped on to the part time timetable, the corridor, the behaviour team, i thought it may work, now i laugh at that. I think i am ready to stick two big fingers up to " normal main stream" and embrace the different. I LOVE MY SON.....HE ISNT NORMAL.....HE IS SO MUCH MORE (and i am learning every single day) xxxxx