The Officious System - A Two Headed Snake.

If you are still with me, I thank you for your interest and I hope that this blog will be a great space for you to begin to feel community and to get some ideas on how to stay sane moving forward. The beginning of the journey is definitely the hardest. You are dealing with the shock of the situation and all the denial moments come back to you in waves. 

‘He’s a big boy, his energy has gone towards growing, he’ll talk in his own good time’ the officials who say ‘Ahhh he’s still so little, he just needs a bit of time’ 

‘Don’t worry, all children are different and do things in their own good time’ 

No. No. No.

I’m here to tell you as a brutally honest friend who you don’t see often but who you trust to be objective and kind… NO. The more research I do, the more I learn about brain development and if something is not happening in its allotted window it’s a red flag. That’s not to say that whatever the issue is that it can’t recover or readjust but these issues are signposts to something that isn’t developing as it should be and there are things you can do to stimulate the brain and to help your child develop in a healthy way. 

Do NOT listen to someone saying that you should wait.. and it's nothing to worry about… because if it’s someone in the system you are talking to, then they have an agenda. The explosion of ASD and other developmental issues is off the scale and the system is creaking so you will be left as long as they can put you off from demanding that someone take you seriously and begin the process for the assessments. The only positive going in our favour was that Jack was suitably severe enough in his presentation that there was no denying that there was an issue... Both a blessing and a curse…

We began the process with home visits from the local Speech and Language assistant (who was utterly lovely!) The special needs HV (one of two in the county!) came to see Jack at home and at his new preschool. We received an appointment with a Paediatrician and we were on our journey to a diagnosis. At this stage Jack was 3 and since the disaster at the Kersey nursery we had found a lovely village preschool near our new home, which was more like an old fashioned playgroup. They tried their best but (in retrospect) the more we began to discover about Jack we realised that the space was too small, he loved to be outside and they had a tiny yard, it was too noisy, there were too many children and this led to some quite severe episodes of dysregulation and violence. I remember getting a phone call from the school and Jack's key person said that Jack’s behaviour was severe and it wasn’t something he was just going to grow out of.

I was devastated.

I look back and I wonder how I didn’t twig but Covid, moving, severe sleep deprivation and working.. you just keep pushing on through don’t you..and Jack being my only child, I just didn’t see it as clearly because even though he didn’t verbalise other than the occasional ‘up’ I felt like we talked all the time. The bond I have with my son is unlike any other that I have experienced. I know what he wants at any point and it feels like there is a flow between us. Just like you and your child.

You KNOW…. You can feel it when you tap in.

So we agreed in April 22 that Jack needed a new setting and went about finding an amazing Montessori preschool with a huge outside space, chickens, Cars and scooters, and the loveliest staff who had extensive experience of SEN having 8 in the cohort the previous year and Jack would become one of 4. This in itself gave us a bit of comfort that Jack was no longer ‘the troublemaker’ or the ‘difficult one’ in a space that wasn’t conducive to supporting him in the way he needed. So we had some settle days in the July, ready for a September start. In the meantime I reeled between trying to organise private speech and language, disabled horse riding (this was a disaster but hopefully something we will go back to) and discovering that we couldn’t just go somewhere spontaneously with Jack, and trust that he would cope with unknown spaces, or attend to instructions.. and I was struggling with living in a county where I had no friends and didn’t know any other SENmummas.

This last part is still the case in the main. I have a handful of fabulous women that I know in Suffolk, one of them being a SENmumma that really helped me on my journey to fight for Jack’s school, but at that point the only contact I had with anyone who wasn’t my husband was mainly the NHS team who were busy assessing Jack. It didn’t take long to realise that actually the people being assessed the hardest are you the parents. Are you doing this or that correctly, are you doing all the online courses that are required to stay in a system that is just going to tell you ALL the things that are wrong with your child, in reports that are worded to shred your heart.

A spiritual assault of negativity with no real solutions designed to cater to your child's individual needs. Your eyes will be opened to all sorts of truths that you won’t want to see… You are on a quest my friend, and as such you need to gather your magic objects to keep you safe and powered up to move with wisdom and protection on this journey battling monsters.