I was reminded yesterday that Jack has now been out of education for 7 weeks.
It has been hard and is having a significant impact on us all. I am having a flare up of my fibromyalgia which is making me so incredibly sleepy at the moment. Jack is just sitting around in his pants and dressing gown, watching TV and looking unhappy.
Yesterday we reviewed the EHCP, to a point, and discussed Jack’s future.
An EHCP is an education, health and care plan and replaced the “statement of special needs” a few years ago. It is a legally binding document and if a school fails to comply, they are breaking the law. Our school has tried to comply, but Jack refuses to enter the building.
Yesterday I summoned my inner Queen, and my Warrioress, to allow me to fight the corner for my son.
Much like a Queen, I have sought counsel where I feel it is necessary. I have logically processed my decision and I have made my decision based on what I know would be best for Jack. I have named my top three schools in an email to Elaine, our representative from the council.
I also had the opportunity to give absolutely damning feedback to the representative from CYPS (Children and Young People’s Service, a replacement for the Child and Adolescent Mental Health team). It should not have taken me 14 calls to get a call returned about whether someone would attend a meeting. We have also had our formulation appointment cancelled which is disappointing. However, Jack is going to be receiving Talking Therapy very soon with an OT, and his ADHD assessment has been concluded. He does not have ADHD. We have been told we cannot have a sensory assessment done and that all it would give us is a “sensory diet”. So I just told her, “No problem, we will take that.”
Our next step is to finalise the EHCP, adding in quantification of the occupational therapy, speech therapy, and any emotional well-being activities they will be doing. It is also important to include that Jack has the potential to lash out – because that is his go-to method of communication when words fail him. It’s rare but he needs adequate supervision to ensure the safety of his peers.
It is incredibly stressful, depressing, and indeed a strain on anyone, to have to talk in so much detail about my son in an exclusively negative light.
I even cancelled a school visit just last week because actually, I just couldn’t bear to go and talk about all the negative stuff to one more person.
I genuinely feel that if I give in to tears and start crying, I will actually never stop crying and will dehydrate, shrivel up like a raisin, and die, pruney, gross and alone.
And so the next steps for us, are to chase up my son’s provision for the Talking Therapies, to fully review the EHCP documentation with school, to ensure EOTAS (education other than at school….tutors basically) is applied for, and to just keep going. It’s hard and it is tiring but I need a plan to help us keep moving forward before I go insane!
While this blog may sound very self-centric, I just want to emphasise that my priority is Jack – but he cannot advocate for himself or fight his own corner, or complete his own paperwork. And so the stressful task of ensuring the papers are correct, adequate and completed in satisfactory detail, falls to me. It is not an easy job either – schools often try to use vague language and it in fact needs to be very, very specific to ensure the provision is actually delivered. Vague language such as “Jack would benefit from up to two sessions per week of speech therapy” allows them to say “Well it doesn’t say how long we have to spend so we did 5 minutes twice a week.” A better sentence would be “Jack will participate in two sessions of speech therapy per week, each lasting a minimum of 15 minutes”.
And so we may have started it all yesterday but there is still a very long way to go to ensure it progresses as it should.
But we made a start.