We’ve had a really rubbish week. Horse riding was cancelled due to storm Christoph, and because of storm Christoph we’ve had some rubbish nights sleep, some nights only getting 2 hours because of the wind and the rain. Part of Charlie’s sensory processing means that he’s unable to filter out background noise so the storm was really terrifying for him. We honestly can’t win, in the winter months we are battling storms and windy weather and in summer we are battling the heat, which makes Charlie’s skin really sensitive. On top of the noise from outside and the light of the day coming in from the street. Having the windows open because he can’t cope with the noise of the fan, yet the windows open means there is a lot more noise outside! It really is never ending. But I choose winter every time as it is a lot more kinder on Charlie than summer.

Anyway, I digress,,, Monday was point blank refusal and melt down. I’ve noticed the transition from weekend to weekday is starting to affect Charlie so I’m going to have to put in place some changes to help smooth that transition. Unfortunately this will mean no more later nights and no more treat/movie nights. It seems incredibly unfair, but if it’s the transition he’s struggling with then there must be limited transitions, and this is a way I can limit them.

Tuesday was of course horse riding which was cancelled. Wednesday was awful! Thursday slightly better, and Friday there was no school but I did manage to get Charlie out in the car for a drive. Other than the couple of school runs he hasn’t left the house at all and it is really difficult. The sensory overload he has when he leaves the house means that leaving the house is minimal to reduce demands and anxiety.

Anxiety! Thursday, I had a call from the community paediatrician waiting list team to book us in for an appointment. I explained to her, the secretary (who are all very lovely) that community peads wasn’t what we needed and that a referral to CAMHS (Child and Adolescent Mental Health Service) is what we needed. I explained why, that it was because of medication. She stated she would investigate and get back to me, I didn’t want to take up resources and time of an appointment for something that was unnecessary. A few hours later she rang back with an appointment for Monday….. with a community paediatrician. Apparently the secretary went back to SPOA (who I raised concerns with that we had been referred to the wrong department in December) and they have suggested that Charlie is too young for medication.

I am exhausted! The months Charlie has been without support, and there is no support, I have tried there is none!!! And then the alternative is medication, and now it feels as though they are gate keeping this medication. And being selective over who is able to be prescribed it. I know 100% this is not the correct way of determining if Charlie can have medication.

This week has left me mentally drained, it is also January the worst ever month of the year. And the no progress at school is also so draining. I have to give a shout out to the family liaison officer who is always so positive and willing to try, even though I must sound so exasperated by it all! Her energy really does drive me.

So new plan for school next week. This is a welcome change for me for sure having Charlie settled in an educational environment is still the main aim and has got to be my number one battle. But Charlie is one of 3 children and right now my middle child is suffering and needs my attention and it is causing such a lot of mum guilt for me. I have taken the decision to send my daughter to my sister’s for a few days, so she can get the attention and space she deserves. It is insane that the family has to physically fall apart and break down before help and support is allocated. It makes me wonder how many other families suffer and get to breaking point, or do in fact break before the services they desperately need get involved and make them a priority.

I wish I wasn’t as drained as I am. I wish I had sufficient breaks and support. I wish I wasn’t a solo parent and that there was the person equally attached to Charlie to lighten this mental load. I think some of the issues I have is that I expect there to be an equal person and there isn’t. That support is not and has never truly been there, and I have to leave that expectation at the door. It really is a double ended sword because I need that person to step up to the responsibility to give me the support and breaks I need, to be at the very best I can be to deliver care to our child. It is very unfortunate that it is not there, more so for Charlie and his siblings, it is only them that misses out on the gift of 2 parents that are equally dedicated and committed to their children.

I will try to update on Monday! No guarantees unfortunately. I also have lots of topic blogs to write, on personal care, sensory processing and being a sibling in a family with a child with disabilities. So will definitely try and get those written.

Georgina x