It all feels so unfair….
As a Mum of a SEN child who also has a number of chronic health conditions life if not without its challenges.
We can never truly relax, we can feel like we always ‘on duty’ and we can often get worn down by the constant battle to keep our children well and give them the support they need.
It is moments of joy when it can hit hardest, like sitting around the table at Christmas when my son refuses to eat.
While on holiday recently I watched other families rock up to restaurants and enjoy a family meal without drama and I know, for us, that can just never happen. A meal out is meticulously planned, there is no spur of the moment eating going on here. Not only is my son coeliac he is also autistic and eating is a huge issue. He cannot cope with other people eating what he is not allowed or the food he does want, not looking quite the way he expected.
He has never been on a sleep over in the 4 years since he has been diagnosed as a type 1 diabetic and my husband and I have never been away without the kids since then either, there is just simply no one we can leave them with who would be able to cope.
Being a SEN Mum also means constant battles with the school to make sure he is getting the adequate support he needs.
Quite frankly we are never off duty and it often feels like a full time job.
All of this can lead you to feel like life is very unfair at times.
This is not how family life was supposed to be.
A Period of Grief
I went through quite a long period of grief, coming to terms with a child with a range of difficult needs hit me hard. I spent a long time being angry, thinking why me, why can’t my child just be like everyone else and often thinking this is not the life I dreamed of.
Letting go of these feeling was a really important step in moving forward, yes it is not the life I imagined, but it is glorious in so many other ways
The Importance of Support
I am fortunate to have amazing friends who provide a support network for each other. We laugh together and one of our favourite sayings is ‘can you even imagine that’ when we hear of a child achieving the normal everyday milestones, like sleeping! Finding the funny side of a situation really is such good medicine, just the other day we were laughing together at all the names our children have called us.
Self-compassion
Laughter and self-compassion have helped me to heal and come to terms with what our life looks like now. Also letting go of judgement, my favourite saying is unless you walk a day in my shoes you don’t get to judge me. I no longer compare our life to others, our life is amazing in so many different ways.
Self-care
Looking after myself with what I eat, getting outside to exercise and the connection I have with others are all parts of my survival kit. I try and reduce my stress everyday so I can be more present and available to my son whenever he needs me. Taking just a small moment every single day to pause, reset and prioritise my own health is a vital part of my self-care routine.
We couldn’t be prouder of every step my son takes towards independence, we celebrate every small win and stand by his side as he navigates his way through life.
I have a real passion for supporting parents of children with special educational needs.
Please do get in touch if you think I can help you navigate this journey too.