Spike is eloquent and clever. But he is young for his year, he has missed huge chunks of education due to ill health and he is far behind his peers.
The pressure to conform to the school week and for our child to reach government expectation has had a huge impact on Spike's self esteem and on my wellbeing.
Vulnerable children like Spike need to be supported through the challenges of mainstream school.
I would drop Spike off at school, race home to do as much as I could before the inevitable phone call asking me to pick him up again. Spike would come home feeling miserable, either in pain, with his stoma bag falling off or just exhausted.
This lack of routine left me feeling resentful and guilty. I was never able to complete a task, let alone eat lunch, My mind was preoccupied with all the things I had failed to do and I felt overwhelmed with the list of things to get done. I felt that I was failing Spike academically and both of my children emotionally.
Things had to change.
So we came up with a Plan A and a Plan B and with the support of our outreach nurse we told school what we were doing.
Plan A - Spike would go to school Monday, Tuesday, Thursday and Friday and he would stay at home on Wednesdays. Didn't work.
Plan B - Spike would go to school from 9 - 1:00. SUCCESS
Schools do most of their work in the morning - Education.
By staying for lunch he gets to play with friends - Socialisation
Spike has fewer hideous and embarrassing situations - Emotional calm
I have the certainty of 4 hours - I feel more in control!
Spike re-boots in the afternoon or if he has energy we go off and do the things other children do after school.
I can't believe that I tortured myself for years thinking I had to conform.
I must also note here that Spike has an Education Health Care Plan with a dedicated teaching assistant. He also gets 2 hours of 1 to 1 tuition a week funded for by the Department of Education, we had to fight!
I recommend you read the Education & Learning advice provided by Contact.
If you are a parent, like myself, and are struggling please do email me.
And if by some miracle you are reading this article and feel that you can support my fight with the Department of Education please please help us to make life less stressful for the families of vulnerable children. contact me.
Lastly, here are some of the resources we have used to support Spike's education from home. Some are free, some are challenging and some cost but we apply for a grants. I will be writing more about these in future blogs.
Toe by Toe - Is your child struggling read?
The Step Programme
The Speed Writing Programme