SEN and Autism
“Hello…” from SEN and Autism
I’m a parent of a special needs child in the north of England, UK. A child who has a diagnosis of ASD (Autism Spectrum Disorder) or condition depending on which page of the report you read and also ADHD. Wether or not ADHD is part of ASD is another question for a later article.
There is also presentation of PDA, now we are into the contentious area with this one, as there is clear and present everyday occurrences, yet we cannot at this time get PDA added to a diagnosis as PDA “is part of ASD” (or does it even exist at all!) We think it is and should be recognised as its now the main trait causing trouble.
Also, very rarely but valid is the odd ODD afternoon or evening.
We have an EHCP (did have Statement of Special needs) and two ring binders of paperwork. School is currently mainstream but this might have to change due to the stress of upper key stage 2.
Life used to be fine, but recently it’s got much harder as our child is getting older but lacks enough maturity to be safe in everyday situations.
We are most grateful for the help and support we do get, but often as our child changes, this support does not keep up with the pace of change, hence the endless meetings.
We would love to do more for the family, but often we are so tied up in the “process” of SEN, that it consumes a vast amount of our time. Everyday goes by and there’s some issue to resolve, or another meltdown due to a minor event. Getting our LEA to do what they are supposed to do and on time is difficult. We even have special software to read encrypted email as most of these conversations are “officially sensitive”.
As we also have an open CAF (common assessment framework), we have the bizarre situation of having CAF meetings at the same time as EHCP meetings.
Talk about needing s glossary of terms. So as you can see we have had to learn a lot and quickly, but with carers coffee mornings, independent support, family support workers, doctors, education psychology and autism teams, over the years we have managed to get most things done, all be it slowly. The problems come as child gets older and school life gets more difficult with the ever more difficult curriculum.
So why SEN and Autism..?
As you can imagine having been heavily involved in the system for a number of years through primary school, a knowledge of the system has built up and it’s time the share this, along with the need to do some campaigning to get what children need and deserve in terms of supporting them. As unfortunately we live in a country that does not fund mental health well enough especially 0 to 11 age group. You will see me talk about lack of support, lack of money, no services. This is sadly the norm.
We have learnt to cope the best we can, and if we can help others, then we can all understand what it means to be a special needs parent.
May 2017 by SEN and Autism