HOPE…..The beginning of my SEN Journey and beyond…
My name is Athene and if you are reading this then I expect SEN is part of your life story, be it yourself, someone in your family or perhaps you want to learn more in order to help support someone you know. If you are directly affected, because you’ve recently had a diagnosis for one of your kids.. well… I’m navigating my SEN journey just like you!
Something that I think I should mention about this journey is that it’s exactly that! A journey, a never ending opportunity for learning. So please don’t put yourself under pressure to reach a point where you have ‘got this’ and where things are completely under control. As a former control freak this may have been one of the most challenging aspects of this ride to accept! Although please don’t lose heart. Things can.. and WILL.. get better, behaviours will come and go and challenges will shift and morph into new ones and at this point the world is our oyster because the reality is NONE of us know how this is going to turn out, or how our children will potentially develop… so there is ALWAYS hope. Don’t forget that.
We were an extraordinary family from the point of view that Jack was a much wanted first (for me) child, later in life, something I’d always yearned for and actually had wondered if it would ever happen. Working hard freelancing in advertising I was a bit of a multi-work hat wearer. Actress, Voiceover artist, Freelance Head of New Business (sales) I was living my best life but I was the archetype child of the Thatcher years - We were told we could have it all and we were told we had time to wait… so wait I did… watching Bridget Jones on a yearly Christmas repeat pilgrimage. Identifying on a soul level with the character, as I too ‘fannyied around with the press releases’ and hit Christmasses single and unimpressed.
I never met anyone that I clicked with…. And then I did.
Jack, our miracle baby, turned up early in January 2019 via caesarean and despite that fact, he was so large he was ripped out with forceps. So large and jammed in.. that I was thrown from side to side on the gurney as they shook him out. At the time I was so out of it I didn’t think about it but now I wonder if that violent entry into the world was the beginning of our troubles. A violated nervous system and damaged blood flow to the brain (if you’re interested look up The Neck Connection by Dr Ali Mosaraf - It’s his belief that all neurodivergence and ill health in general is caused at birth with the impact to two ancient veins that feed the central part of the brain… I think there is a lot to this…)
Jack didn’t sleep much, but newborns are up a lot aren’t they? I struggled with breastfeeding going 50/50 since birth and I pretty much felt that I had been electrified, dragged behind a juggernaut at 80mph and kicked in the head from the side… I had a horrible time in the hospital with a particularly mean nurse who was offended as to how I took my meds (water in mouth and drop in those feckers so they don’t touch the sides) and who on my ‘can you get out of bed unaided’ assessment so that I could go home, set me up for failure by lowering the bed to the floor so my first instinct was to try to sit up, and that's when I learned what it is to have your stomach muscles cut in half… I seriously thought I was paralysed.It was horrendous and unkind and she smirked at me as she told me that we wouldn’t be able to go home until I could do it.. I went into a total spin… Luckily, I was saved the following day by a lovely nurse who just asked me to swing my legs out of the bed and to stand up… I know it’s virtual sacrilege to criticise the NHS but the further along I go on this journey and the absolutely horrendous and challenging conditions a lot of families are left to endure, I feel very definitely that they stem from the child's first entrance into this world… Wish I knew then what I know now…
The point is… what I am perceiving… is we still live in the dark ages. We think we are all progressive and civilised but the system that ‘cares’ for Mothers and children both at birth and then beyond is seriously wanting, and seemingly populated with cruel souls whose main interest is control and dominance… That’s in terms of the mainstream… alternatively there are some breathtaking minds and hearts challenging the mainstream narrative on cause, effect and how we can best support our SEN kids to operate at the best of their capacity. So… those are the people we will focus on, in the main.
The others will bring you down… so on this journey you will also need to have your identifying superpower switched on to 11. Your cloak of invincibility and protection visualised and ON… Mental and emotional protection will be the saving grace for you, and more importantly for your child. If you want to be an advocate for your beautiful baby then you really need to get in the habit of caring for YOU. Numero UNO.. then your RELATIONSHIP and together with your partner, your child. The first two aspects are the absolute foundation for life moving forward. That means conscious decisions, space, togetherness and family. This is what will make up your self care.
If you are a single parent, then once I’ve got up off the floor grovelling at your feet, worshipping at the altar of your superhuman capabilities.. then all I can say is SELFCARE… really loudly! I’m going to write it in the steam of your once a month shower, at the bottom of your shopping list, in the dust accumulating on the shelves and in your ear as you perhaps doze for a small portion of the night. You absolutely HAVE to put a system of support in place. If you have family who are around and able to help…AMAZING… if you don’t, then talk to your local health visiting team, your doctor, your local council and get some respite care. This is non negotiable if you want to survive.