Are we any further forward?

This week, it isn’t my son asking the questions, but me. And the question I keep coming back to, over and over, is:

“Are we any further forward?“

It was Monday and the first day back at school after the half term holidays. Given how the Sunday had gone I hadn’t much hope that my son would willingly go to school and when we woke up on Monday I knew he wasn’t going and he didn’t go. We are now well versed in these school absences, we no longer have much upset about it or any major meltdowns, I don’t cry on a morning anymore, I have almost (not quite, but almost) accepted that this is currently the situation we are in. And so on this day I accepted the situation, I started work early, as I didn’t have to do the school run. I set my son up in his bedroom with what he needed (which was to lay in his bed in the dark with his favourite things) and I worked and periodically checked on him and played Uno with him. Then the post arrived, and amidst the usual letters, I saw an official-looking one addressed to me. Bracing myself for the dreaded fine for all his unauthorised absences, I opened it. But it wasn’t a fine. It was a letter from Early Help.

I had referred us to them in May following a really traumatic incident on my birthday that still haunts me now, and I asked for help for my son. This resulted in a Early Help assessment being carried out and an Early Help Plan putting in place which I was pleased about because my son was in distress, and is still in distress now and I thought that if you needed help you should reach out and ask for it and Early Help is in Children Services – that’s what they are there for aren’t they?!?! Families in distress?!?! I had to give a worry statement and score it on a scale of 0-10. My worry statement was that my sons sensory needs weren’t being met at school and I rated this a 0. The Early help worker was lovely, she really was and it felt like I finally had someone on my side. And as this case progressed, “the most complex case she had ever worked on”, she too was shocked at the attitude of school. And we are now 6 months since I made that referral and nothing has changed at school – my sons sensory needs still aren’t being met. So when I opened that letter and saw it was a letter confirming to me that the case was being closed to Early Help I was shocked. I still rated my worry statement as 0. Nothing was happening at school. I couldn’t understand it because the last time I had spoken to the early help worker I told her this, in fact I told her that where we were at now was worse than where we were at in May when I first referred us in. I sat down at the table in despair….again….and I didn’t even have the tears, I just asked myself

“Are we any further forward?”

In the last 6 months in between working, and my other child, and trying to have some sort of a life we had had a CAMHS referral sent in with the waiting list being 4-6 years, I had attended numerous Parent Led CBT sessions, my son received counselling, I received Family Support from a local charity attending face to face meetings with them and having telephone calls, our family received support from Early Help again attending face to face meetings and having telephone calls, I attended NHS Sensory training, my son had a sensory assessment carried out by a local OT service, I got the GP to refer my son via the Right to Choose pathway and I filled out all those forms, I filled out all the forms for the Right to Choose process. I had had numerous meetings at school firstly with the SENCO that had now retired, and now with the new SENCO. I had spoken to the headteacher on numerous occasions, I had even sent my mam round to the school who had words with the headteacher. I had spoken with SENDIASS and with the Local Authority SEN team. I sent email after email after email, phone call after phone call after phone call, form filling after form filling after form filling. I researched things on the internet and social media and I found a group of similar people and joined their network. I had a notebook full of notes from each and every step of this journey and were we any further forward? Really?

There have been positives. We’re now on the Right to Choose Pathway, where the waitlist is a shorter 12 months. The private OT assessment recommended sensory treatment, which will start soon, and my son seems excited about it. I also joined a “Clan” online—a support network for parents in similar situations—and being with people who get it has been a huge relief. These small wins mean a lot.

But what hasn’t been achieved is the biggest negative and that is school. Day to day we were still struggling with school, and not just struggling, just not going. For a year I had been hounding school asking for something to be put in place at school. I had wanted something in place before it got to the point we were at now and I had been fobbed off and fobbed off. I had even been misled by the previous SENCO, either deliberately or by mistake I don’t know but when this was raised to the headteacher he fobbed us off too. I don’t think of myself an assertive person to be honest, so there was a big part of me that thought this was all me, I’m not saying the right things, or asking for them in the right way or I’m just not pushy enough but my story is not unique here. This is happening a lot and I needed to remember that.

And although it seems like there is a lot of positive stuff ongoing, and there is, the one negative completely counteracts everything else. My son, and all children, spend 30 hours a week at school and without that being right for them then with the best will in the world and all the expert knowledge its pointless.

And so today when I received the closure letter from Early Help once again I felt despair. Because it felt like she was on my side. She was championing getting help at school and she had left me without even resolving it. How can that happen? Yes I guess she had signposted me to all the right people but I still needed help.

The next day was another tough morning and my son didn’t go to school again. I got a phone call that day from an Education Welfare Officer as she was concerned about my sons attendance. I have to say she caught me at a bad time and I gave her it all listing all of who I had been in contact with….Daisy Chain, SENDIASS, Inside Out, Time4You, the LA, meetings with school and so on and so on, but surprisingly missing out Early Help. And then she said it seems like you have done everything you can. Yes I have. I have. And look at where we are at. And then she said…

“Have you tried Early Help?”

Someone give me a break. Someone give me a f**king break.

So I guess the answer is no we aren’t any further forward because there is no further forward. Its one big vicious circle with no way out.

There is no further forward.