We started off badly, this week has been a total write-off if I’m honest. We’re a little out of sorts as my daughter is also off from school on a 2 week isolation period as someone in her class tested positive for Covid. So, she has been around this week which, again, has upset the balance of the house. As you may of seen Monday was particularly awful for Charlie, the sheer thought of leaving me and being separated to go into school left him with such distress that he ran off, and then assaulted a teacher. I was absolutely mortified. It’s been a good year I would say since he reacted that badly, and it really upset me to see how much he has regressed. Anxiety levels are at an all time high, and we are together 24/7. Charlie hasn’t seen his dad in 13 days, and isn’t likely to see him in the next 14 either unfortunately. All I can hope for is that there is a break at the end of the month, but only time will tell.

Unfortunately, me being furloughed means that there is literally no respite, I can do the food shop for an hour and that is the extent of my free time away from the house. Lockdown, has not helped, as where previously I could rely on a few friends that would pop in on us, which meant I would be less isolated but also Charlie would not have to leave the comfort of home. But lockdown prevents this, so no one comes in.

Next week will be even more isolating as my eldest son will be working away and my daughter will be back at school, so I will be totally isolated with only my phone for company. What a sad existence! But a reality to many of us that are in the SEN community, especially those with limited support and doubly those that are single parents with absent 2nd parents. Meditation I believe is helping, and hopefully I’ll fill out the gratitude tree every day next week to keep the spirits up, as I have no knowledge if or when Charlie will return. He should of gone back on Wednesday, however, refused. And today is another session but so far he is refusing.

The anxiety really does cripple him, and it has made me ponder along the lines of medication. Would it help? Is it something we can explore? I made an appointment with the GP, surprise surprise they can’t prescribe childhood medications. It has to go through the community paediatricians, of which we were discharged from in April. Unfortunately, it’s around 12-18 month waiting list for a referral to community paeds, so I’m really not sure where that leaves us. All I can say, is that this journey has been painstakingly long and stressful to access any support and any form of acknowledgement for Charlie’s needs. I wish I had a magic wand and I could make it all go away, I wish I was rich so nothing would be an issue and I could cocoon Charlie up until he was ready to face the world, but most of all I wish I could take all the anxieties and fear away so that he can lead the life he was meant to.

Still no news on respite, I believe we are on a waiting list, it’s been 3 weeks for one service and almost 6 weeks for the other, and still no news. At the next EHCP review I may look into direct payments to have a carer, but that of course will be another battle, and a possibly long drawn out communication and transition for Charlie and of course, it will neglect the fact that I fought for this because I wanted him to have access to the community and be ready to join in with his peers in social activities. We all just want our children to be inclusive, no matter what.

So just to summarise, I will need to advocate for medication now, advocate still for respite, advocate for the specialist provision because although I advocated for the placement, it still isn’t secure. We still have work to do. Advocate for changes to the EHCP. It will never stop, it will never be “done” I will always have to advocate for Charlie.

Georgina x