Paperwork
This week’s blogging question is, “Do you have a lot of paperwork for Coraline?”
For me I am going to use the analogy of when I was caught in a wave on Bondi Beach many years ago. I was near the shore. The shore was in reach but I felt myself swirl around in the wave, out of control. I felt myself dragged along the sand. Finally I emerged. Stunned. Over the past year and a half with the paperwork I have to do for Coraline, the chasing calls I make and the chasing emails I send, I am in and out of this wave. Mostly in it. My emotions go from 0-100 with another email unheeded or another plea from us as parents unanswered. We have brought about change for Coraline but there is continually so much more change to bring about. And it does not come unless we are vigilant. A separate point is that in general the day-to-day form filling and administration take up about half of my hours each week. Yes, we do have a lot of paperwork.
Kevin and I are fine. We do a lot of mindset work. I am actually going to seek therapy for myself for the amount of anger I feel at how many hours we have had to push and the impact it’s had on me. This has all come about over the last year and a half since we began working on putting Coraline’s EHCP in place (Education Health Care Plan stating legally binding provision of support required for Coraline) and missed provision in it. It’s not just anger of course, it’s tears too, and feeling bad about myself when I stand up about things as that does not come naturally to me. And the tiredness. The paperwork, and the coming up against a system which is not working, dominates my life and my emotions. I attend webinars, call helplines and ask amazing friends for help with the process. All this is with an EHCP in place.
But something must come from this.
Us helping others. Us understanding so we can help others. Sharing what we know and what has swung stuff for us. And sharing the knowledge that there is another way other than to sit in the anger and despair. That actually we must ride the waves.
The other way is a way I am discovering.
The other way:
- Involves shifting my energy to full on love for all difficult situations: putting this energy in rather than frustration. As Kevin points out, the “getting mad and sad” way isn’t working
- Realising it’s all about our attitude
- Visualising the outcome I want
- Speaking up immediately and directly about what we would like to see happening.
A new strategy I have learned:
- If I am feeling stressed, take two short breaths in and one long breath out as this activates the parasympathetic nervous system (thank you @hubermanlab podcast which Kevin is always asking me to listen to).
- Oh and asking Kevin to send the emails for me these days as he doesn’t care about being direct and he doesn’t stew on what people think
Strategies I have always used:
- Verbalising everything to Kevin, family and friends. It really helps to say it all out loud
- Exercise
- Nature
- Humour. Kevin and I laugh a lot outside of the EHCP stuff and even around my reaction to it (as well as the serious, long conversations around it)
- Helping other parents and working to bring about change. I do believe change starts with one person taking a stand. Coraline missed five months of therapies after we moved to Devon. I spent hours calling helplines and we called a complaints meeting with the Local Authority. I put weeks of time in to this. I have written articles on my own website and for SEN Jungle website on our experience and the legal terminology we used to get compensation for Coraline.
- Having a longer term vision with our business to set up a retreat. It will be for all, and we will also have tailored sessions to guide parents and carers of children with additional needs for navigating the paperwork, talks from wonderful therapists who we know and more.
Ultimate growth:
- The ultimate goal and growth here is in me learning not to worry about what others think. And for me to draft the email and wait a day before sending it. Then to send the email with the right calm energy behind it. For me to feel happy, comfortable and proud to send those emails and make those calls myself standing up for what is right. For now though I’ll let Kevin send the emails.