There’s a specific sort of grief that comes with parenting a child who is not accessing education, who is not able to partake in activities outside of the home (or outside their room!)

It’s not the grief of missing something you lost, but the empty shadow of what you never experienced.the family that can feel lonely & the sad gap of expectation & reality. The differences of your friends lives and yours, of not seeing your kid on a sports field, with a picture on the school wall, in the end of year awards on a stage, playing an instrument. Whatever it is!

For others it's never hearing their voice. Or other losses. So I am massively aware of how totally blessed I am with what we do have. Each other, words, intelligence than translates into great humour and all the rest. 

For those who are struggling- who have lost a child- or who's child finds it hard to communicate- my heart goes to you, I am so sorry, and I do appreciated every day my child being well and with us.

There is also the joy that comes with their own specific quirky brilliance. The time my son attended a team-building “fashion show” at his new secondary school & created an amazing art piece. A head-piece box that covered the whole face, minus eye holes- with the wording “I do not want to talk to you” clearly emblazoned on! The bitter sweet joy of seeing someone navigate their own way in the world. 

Parenting is always yoga in action isn't it?! Present moment awareness. Compassion & wisdom. Humour & warmth. Clarity & boundaries. Sthira sukha (steadiness & ease)….

But sometimes things feel wobbly! The island of presence feels precarious- encroached upon by the sea of sorrow for the past- for what I didn’t know or didn't do or should have done differently. Afraid of the looming cloud of future…. the worry that the lack of education will prevent him doing what he wants to do!

I know there are SO many of us in this situation now & who have experienced this in the past & will again in the future. The education system is not working. It is not fit for purpose. There is nothing wrong with our kids. Whether they talk & walk, see or hear, sleep or eat- or not. We need to meet their needs to welcome their individual brilliance & find all the ways to celebrate what they can do and want to do.

A massive thank you to all of you who message me when I struggle, and for my part here are my mini-tips incase they are of value for anyone else, with the proviso that tips can be so bloody infuriating so please ignore me/ these if that's how it is for you. We all find our own way.

1. You are a good parent and you have done what you knew how to do. Even if you’d tried something different there’s no guarantee it would have worked better. It’s often a trade off between what you have now and what you may have had in a different scenario.

2. Parenting to help your kid be themselves & be celebrated is the best we can do.

3. Present moment awareness- if you can't get them to school or if you are struggling. Sometimes just take a break. Take a breath. Jump about. Take a bath whatever it is. 5 minutes for you. 

4. Moments with the child. Try to not turn it into a battle. Remember it is hard for them. All kids want to excel (I believe) what can we do to help them experience their value.

5. Ask for support for help. Reach out. Find others who know what it is like. (and avoid Facebook!)

6. Give space to acknowledge your rage or grief at the systems in place or for what you “lost” in not having a different experience.

7. Remember all the things you gained from your wonderful, precious person! Finding ways to be grateful that you experienced a sense of loss, without the loss of the child. 

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Practical stuff:

On the practical side- I have had a massive struggle with schools & to get to see a paediatrician- never mind to get into those who might give a diagnosis. I think my main tip if you are struggling at this point is- do not rely on the school- the SENCOs don't know anything much. Go straight to the GP make it REALLY clear why you have to have an appointment with the paediatrician. e.g. child does not sleep or child struggles to x,y,z. Do not take no for an answer or ask for a second referral or complaints form or whatever it takes. 

Same story at the paediatrician- emphasize any differences & push for the assessment.

Then instead of arguing with the school re provision which they are fundamentally unable to give either find alternative provision or get yourself an educational solicitor. In other words its all expensive, exhausting and enough to enrage a Buddha! (maybe!)

Right now I am back at the solicitors to try to get the council to get the college to prove some extra provision because insomnia means the mornings are not working. It cost me 5k this time. Not available for most. But it means he can get an education hopefully and I honestly could not think of another way to do it. 

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Sending love to you & all the incredible kids & young people out there. Whatever your specific needs and wants may you find ease & love.