CAROUSEL OF CONFUSION

Attachment or not attachment that is the question…

We are on diagnosis number six for Buster. So far in the roll call we have: ADHD (Attention Deficit Hyperactivity Disorder), ODD (Oppositional Defiance Disorder), FASD (Foetal Alcohol Spectrum Disorder) Neurodevelopmental delay, mild autism and separation anxiety (more commonly known as attachment disorder).  These various diagnoses have come out of paediatric and CAMHS assessments.  We are utterly confused as to the best way to parent and what this all means.

CAMHS initial treatment was to put us on a parenting course called “The Parent Child Game” which was in equal parts patronising and unhelpful.  “Extreme ignore” is a session I never want to repeat as it ended in a full scale meltdown which had me and Buster in tears in front of a two way mirrored audience.

So the picture that emerges for us is; it’s complicated. Buster has a myriad of issues that require a myriad of strategies.  There isn’t a silver bullet/gold standard parenting style that will help. We have read heaps of books and attempted dozens of strategies but none work in isolation. Bits seem to help.  But the problem is, a child who becomes so easily dysregulated  has poor impulse control and school especially aren’t able to cope with his outbursts.  All we know is: he’s scared.

We still believe that attachment disorder underpins a lot of his behaviours because they are, without fail, much worse when we are not around.  He spends a lot of time in a state of high anxiety and we are the best ones to soothe him when he gets overwhelmed. Some of the triggers that set him off  we are aware of (busy spaces, loud noises and either one or both of us being away) but a lot of the time it’s educated guesswork.

Traditional parenting really doesn’t work. Lots of carrots and a couple of sticks does, sometimes.  Taking things away simply reinforces his already low self -esteem. He is occasionally motivated by sticker charts but soon disinterested in them. I think the biggest shift for us is in recognising that when he does have meltdowns, it’s because he is petrified and we can learn from him what it is that scares him. We recently attended a Great Behaviour Breakdown course and I have never heard so much sense spoken about our children. Fact: early trauma and loss has a profound effect on our children and the more we understand trauma, the more we can help our kids and our struggling families. 20160501_144255 (1)

A GOLDEN TICKET

Being told we were to receive a fully funded EHCP for Buster was the equivalent of finding a Wonka’s Golden Ticket. We were elated. A year of painful school meetings, social work meetings, paperwork, arguing, advocating, appointments with various doctors, CAMHS and support services, more paperwork and lots of stress had paid off.  Full funding basically meant that Buster would get 1:1 classroom support and hopefully this would increase his chances of remaining in mainstream school.545

If anyone had explained to me, at the beginning of our adoption journey, the amount of advocacy I would have to do on behalf of my adopted children I would never have believed it.  Prior to adopting I had a rose tinted view of the world that our children would be cushioned by a net of societal support and understanding. This is no longer my view.  If your adopted child has issues, be prepared to fight. We stood on the precipice of a massive sink hole with school and Buster almost got washed down it.  It makes me effervesce with anger that support has to be so hard fought.  I have a sound working knowledge of the education system after teaching for so many years, but what about families who don’t have that kind of knowledge?

Other than people within my immediate social circle I also gleaned a lot of advice and emotional support via twitter.  Thank you tweeters, too many of you to mention but in terms of groups…massively helpful twitter accounts: @AdoptionSocial  @TheOpenNest  @ThePOTATOgroup  @lgbtadoptfoster   you guys rock.

Adopted children almost exclusively have difficult starts but many people working with children still believe adoption is some sort of panacea. Perhaps the biggest hurdle faced by most carers and adopters is the level of awareness schools have. Few teachers have a working understanding on  attachment issues, neurological developmental difficulties and the effects of early loss and trauma on children’s social/emotional and educational success. There is also a lot of evidence to show that many adopted children have problems with executive function which impacts on all areas of learning.

You may be lucky enough to be in a school with a strong understanding of your children’s needs, but if you are not, then you may have to be the one enlightening the staff and pushing for entitlements.

EHCP

 

In the previous weeks school meeting we had been told that our chances of getting an Educational Health Care Plan  (EHCP) were extremely slim, it would also take a long time (hence the school’s push towards a PRU).  Anecdotally I had heard the same over the years and knew it would be a battle.  EHC plan’s replaced the old statementing system but basically amount to the same thing; your child gets funding for support in school that can be either devolved to the family directly or to the school. The support usually takes the form of the school finding a learning support assistant who works alongside your child, crucial if you have a child with extreme behavioural difficulties and problems self-regulating.

The school SENCO agreed we 20161118_140532should try and go for it and so she set the ball rolling for EHCP application and an educational psychologist came in to asses Buster.  Operation; we will get an EHCP, began.  A note to the wise: if you have a looked after or adopted child keep absolutely EVERYTHING you can in terms of paperwork that would ever support a claim your child has difficulties; luckily we had. We had kept every doctor’s report, CAMHS assessment, Ed Psych, Speech and Language Report, pediatric assessments,  nursery and school reports, exclusion letters, hospital letters… you get the idea. We had boxes and boxes full of letters and we sifted the most relevant and attached them to our application.

There are several organisations around that can help fill out the form (which has ridiculously tiny boxes for vast amounts of info, I attached 14 appendices ;0 ). The free agencies out there to help are : http://www.familylives.org.uk/      http://www.sossen.org.uk/    https://www.ipsea.org.uk/

We received stellar advice that helped us put together a very convincing case for our son to receive a fully funded EHCP. All we had to do after the hard slog of putting together our application was wait.