So we’ve been a bit quiet over the past week or so. Things have been a bit busy here with various people being ill and just the general busyness of life.
We have also stopped putting Toby to bed at a ‘normal’ time. Most people know that we have big problems with sleep and have come to the conclusion that giving Toby his melatonin when he starts showing signs of getting tired which is around 10/11pm means that we get a better block of sleep. Rather than putting him to bed at 7:30pm and then him being up for the day by 3am. It’s not ideal as it means we no longer have child free evenings but anything that gives us all a better night sleep is good in our books.
Things have been pretty challenging with Ted too. As most people know he too struggles sociably and is under a paediatric consultant. Our new Health Visitor came around last week to do his two year check…he laid on the floor and screamed and kicked the whole time she was here…in the end she didn’t even bother doing his height and weight…never mind his two year development check up!
It brought back a lot of memories of Toby as he too used to struggle with people coming in to the house. He was a lot less vocal than Ted (still is…!) and he would cry and try and hide under my top or take himself off in to another room. These days however Toby is so much more easy going. He copes so well with adults (children are much more challenging and unpredictable). It is really encouraging to see him growing up and coping and is a real answer to our prayers. In some ways Ted is more of a challenge for us at the moment.
On another note when flicking through my calendar last night, I suddenly realised that Toby’s Disablity Living Allowance tribunal is next week. I spent most of today speaking with Welfare Rights and sorting out all of his evidence and collating it in to an accessible format ready for the panel next week. Everyone that I have spoken to agrees that he meets all of the criteria for Mobility in regards to having a ‘severe mental impairment and challenging behaviour’ It’s quite challenging emotionally as focusing on the negatives isn’t nice but we do need to share the reality of our situation. We would appreciate people’s prayers next Tuesday morning that we would communicate well and for the right outcome.
I am aware that all that sounds a bit negative…but that’s the reality of raising children with additional needs. We are ok honestly…tired but ok!