A statement of special educational needs to include up to 6 hours of family counselling…

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I remember being told, “Your son is on the autistic spectrum, it’s in a milder form, however his speech, language & communication disorders, further impacts on his frustrations, anxieties, resulting in aggressive behaviours.”

I knew his frustrations resulted in aggressive outbursts, we witnessed up to eight on a good day and exceeded well over thirteen on a more stressful day, and just occasionally the whole day was one big melting pot of crying, screaming, hitting, biting, spitting, head banging, soiling and smearing and throwing whatever came to hand.

At that time my husband was struggling to understand or accept the situation. He found it difficult to bond with our son, even a trip to the park wasn’t straight forward, our little boy didn’t like swings and didn’t know how to interact with the other children. The other dads played ball with their children, but our son had no co-ordination or interest in a ball, and would prefer to spend his whole time chasing ducks, looking for squirrels and being in his own world. Our marriage slowly began to fall apart; I felt exhausted by the time he got home from work; I couldn’t be bothered to engage in a conversation; our evenings relaxing together had disappeared and was replaced with running up and down the stairs trying to settle our son to sleep, sleepless nights took its toll too; we became to tired to bother about each other and my focus was 100% on the children; I resented the fact that he could come and go at his leisure; he maintained his hobbies; I felt I was barely existing.

Family members struggled to understand our sons behaviours; I felt they blamed me, I felt everyone blamed me; all their unhelpful advice, all their comments, they didn’t know what to do or how to help. Friends from playgroups stopped seeing us because often our son became aggressive towards theirs or he would make a mess in their house.

At the time we had a dog, a springer spaniel called Harry, he barked endlessly whenever he was left alone, which of course irritated our neighbours. My lowest point, was a day I will never forget, its a bench mark for the rest of my life, when I’m feeling low I reflect back to that day and think to myself ‘Is this as bad as that day?’ That awful day when I was called into a meeting at my sons pre-school, they reported nine incidents in that one day, they had also contacted social services to do a home check because my son kept having bruises (he has a stiff gait in his left leg and constantly trips over and bumps into things); when leaving the meeting I walked past a child’s mother who was in floods of tears because my son had seriously hurt her son; when walking to the car he tried to run away from me screaming extremely loudly, “I no go car, get off get off” I had to wrestle him into the car, whilst many of the parents and children stared; when on that day I collected my daughter from school she wouldn’t talk, and later shut herself away in a cupboard claiming the bullies cant get her there; when we returned home that day my neighbour was standing waiting for my return, and hurled verbal insults at me because of Harry’s barking, I also found a note posted through my door stating that the police had been notified because of the noise; my son cried all afternoon whilst my daughter sat pale faced in a cupboard refusing to come out; later that evening my husband got home from work, he had had a good day and when I released upon him the carnage of my day, I could see in his face his regret at coming home, which broke my heart.

These days are much brighter, both of my children are doing really well, settled and averagely happy – My daughter thrived in a new school and has entered typical teenage life, we have a beautiful relationship. Obviously my son struggles on a daily basis, but he is supported, understood, loved and accepted for who he is. My husband is no-longer my husband, but has become my friend, he lives close by and has become a wonderful supportive father.

In this blog i’m trying to explain how isolated my life had become. I felt I had been sucked into a world I had no control over, a world where I spoke another language and no-one understood or heard me, it was a world against me from every angle, I felt attacked and alone.

Today I work as a counsellor for adults with learning disabilities. Part of the university requirements for my counselling degree is to have 25 hours of personal therapy a year. This made me wonder if my sons statement had included six free hours of person-centred free counselling, would the beginning of my blog read something like this:-

I remember being told, “Your son is on the autistic spectrum, it’s in a milder form, however his speech, language & communication disorders, further impacts on his frustrations, anxieties, resulting in aggressive behaviours. Our findings have shown that in some cases, families and even siblings find it helpful to talk about this with an experienced SEN counsellor. It may be hard for some members of the family to come to terms with this, or simply just to have someone to talk to about it especially if for instance, they are a single parent without a supportive network, they may find it helpful to talk through what options/dilemmas/worries this may present. A sibling might not understand, and wish to speak to someone other than their parents about what it means to them to have a brother or sister with a disability. We have even noticed that in some cases it has been beneficial for some members of the family to experience how it feels to have counselling; some feel it’s not for them, however others decide to use the full six sessions and then continue for further sessions.”

I initially thought counselling cant be for me, that’s only for people with addictions or suffering some kind of abuse or mental breakdown – How wrong I was!

I believe that counselling would have benefitted my family, myself, my husband and even extended family members, either in group family sessions and/or individually. I had pre-empted counselling for my daughter by discussing things with her school teacher, they offered her three sessions with a school counsellor, which she said really helped her being able to speak to someone outside of the family.

So back to wondering and my question, “When a child is given a diagnosis and a statement of special educational needs, would it be beneficial for that statement to include 4 to 6 hours of free counselling sessions?

I would be interested in your comments, as I will be doing my degree research project on this subject.

Thank you 🙂

PDA – My 8year old son – The facts

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During my pregnancy, my baby was scanned so many times, suspected there was something amiss, his head circumfrance seemed too big, then too small – Birth was helped by ventouse due to a dropping heart rate, but all was fine. From birth my beautiful boy suffered from a distended stomach, excess wind, vomiting, constipation leading to painful spasms of the stomach, which meant he only cat napped (2 hrs at any one time for almost two years) Suspected Hirschsprung’s disease resulted  in a bowel biopsy and a Barium x-ray both negative but had left him suffering massive additional stress and more sleepless nights. After being told my son was not getting enough breast milk, went on to bottle and formula, then being told he was taking in too much air from the teat, then being told he was hungry, then starting early on solids (which actually did help with his constipation a little) a dietician referral put him on a wheat free, gluten free diet, the only results from this that we noticed was, less wheat did help a little with the bloating; after a while put him back on a normal diet reducing his wheat intake.
My sons speech was, and I know this due to his little red book (personal child health record) which I thankfully kept updated. By 9 months he knew six words and by 11 months it deteriorated down to two words. By 19 months he had four words and by 24 months it had increased to around eight – He had hearing tests which showed that his hearing was very good. He had the worst tantrums, head banging on floors, biting and hitting. Potty training was horrific because he enjoyed decorating the house with his poos (that went on until he was four ). Mother and toddler groups were a nightmare due to his aggression and I felt other parents looked at me like I was a bad parent. At nursery, he was put on the ‘Action Plus’ programme, a monitoring programme. Home life was difficult, in so many ways. His sister, four years older struggled with the constant crying and tantrums from her brother – and I struggled to know what to do for the best… he only seemed truly relaxed and happy when he was swimming. His speech did start to improve slowly from the age of three, and then little by little he began to link words.
Noticing he fell over a lot and found it difficult to run properly and to judge distance stepping up and over objects, his nursery obviously had to follow up on all the bruises, a brief home visit soon put any questions to rest and a diagnosis from a physiotherapist called it a ‘stiff gait’, possible issues with his gross motor skills. More meetings, more unhelpful advice, more tiredness, more battles. An initial diagnosis from a doctor said ‘Speech and language delay’. Feeling he wasn’t ready for school his nursery kindly agreed to keep him for another year. They struggled to understand this complex child, but they were caring and tried hard.
SCHOOL – After his first permanent school exclusion from a speech and language unit, another doctor recognised that he met the criteria for autism, well not quite, because my son had always given good eye contact, enjoyed big hugs and  wanted to play with the other children. He was given an ASD Statement of Special Educational Needs which included Speech, Language and Communication Disorder, and to cut an Extremely long story short… After three permanent school exclusions from three different types of schools, home schooled for eight months whilst being rejected by many, many other schools, a CHAMS report, a Meath Examination, a battle with the County Council SEN department, a newspaper article, some campaigns involving letters to local MP/Ombudsman/ amongst others, an Emergency review meeting/more reports/ more battles /more letters… and so…
Where are we today now that my son is almost nine years old…
His ASD condition is called Pathological Demand Avoidance Syndrome (PDA), he is mentally five years old, with Speech Language Communication Disorder and Dyslexic. Although his stomach/ bowel problems are still an issue, it is manageable. He currently goes to a special needs school who have some experience with Autism, EBD, ADHD, ODD etc But more importantly they have a flexible manner, a gentle and understanding approach with a low stimulation, calm environment. So far both my son and the school teachers/carers are coping and learning from each other, and are relatively happy.
Some signs of PDA
  • Panic attacks /challenging behaviour:  aggressive tantrums, outbursts, kicking,biting, hitting, swearing, shouting and throwing  (fight or flight, often with no obvious triggers)
  • Communication abnormalities:  Echolalic speech, literal understanding of speech, neologisms (using idiosyncratic words instead of conventional speech), language disorder to varying degrees, inappropriate speech for social context
  • Social communication
  • Lack of turn taking and difficulty understanding  social rules and play
  • Difficulties knowing how to react to another person’s behaviour
  • Difficulties accepting that there may be other perspectives, not just a single perspective
  • Limited gesturing
  • Rigid thinking
  • Accumulative levels of stress
  • High anxiety and Low self esteem
  • Sensory issues – materials, noise, overstimulation, sunlight in eyes, sensitive to temperature
  • Mentally five years old

But he is loving, handsome, kind, sensitive, qwerky, has a great sense of humour, enjoys cuddles, gives full eye contact and tries desperately hard to be accepted from peers and the confusing neuro diverse world.