I know how this is going to go. Some people will expect what they’re used to, a fat bald fella who they’ve met, heard speak or previously read blogs from giving an angle on how life is for his family and more importantly the superhero-in-chief Isaac, and prompting some thought about how things in his life could be made a percentage better. This week though has made it pretty hard to do that.
Seriously, I’m not a moaner. Generally, I’d like to think that I channel negative energy into doing something about it and reversing the swing of the crap-o-meter to be in the fairly positive end. It’s been a conscious process to be honest because there’s been some very, very hard times. I tend to keep the bad stuff in its box, the lid weighted down with the box that says ‘yeah but this is the good stuff’ that slowly keeps filling, more and more.
I shouldn’t feel down. I know that. I know I’ve got plenty to feel ‘up’ about. I know there’s people worse off. That’s what people say. ‘Chin up mate’. Be resilient.
Seriously, I’m resilient. I’ve not had a life of either material riches or success. I’m pretty accomplished at taking a blow, rolling with it and staying standing. Thing is, the last 4 years has thrown so much at that particular wall that it stands paper thin and scarred. It doesn’t take much to make me feel that there’s sod all in the way or my little family going down the tubes. And I’m in a position where I’m not supposed to let that happen.
This week has been, pardon my French, a shit one. The Occupational Therapist referral for housing adaptations has been in with our local council for 7 months. That is how long the waiting list is for the initial home visit. Without being unnecessarily harsh, the visit, on Thurday may as well of not happened. The suggestions put forward by the council are basically three fold : firstly, combine two of our bedrooms to accommodate Isaac’s new needs and equipment and move Ethan (3) in with Jake (8) to share a room, secondly pay out of our own finances to convert our garage to be a bedroom for Jake or thirdly, move to another house.
I can just imagine moving two brothers, used to their own rooms, in together with a 5 year age gap and them knowing that the reason for this is Isaac. There are so many issues with relationships, attachments, self esteem and parenting there (and a genuinely practical one ; two single beds in the room leaves a 30cm gap between them) but none of these are heard. The actual comment from the advisor from the council was ‘Well, you know that there are lots of families where two children share a bedroom?’. Well yes, but the children probably didn’t think that it was their disabled brother that put them in that position and had probably never known having their own room.
Essentially, the response is a lack of understanding. As for the Occupational Therapist role, for me it is worthless since they made the comment to the adapations advisor in front of us to say ‘”I’ve prepared ‘the parents’ for the fact that this process is always difficult and stressful”. Well, clearly job done, very well done.
In a nutshell we must either move, or find £10K to convert our garage, or move two boys into one room. The last 2 days since the visit have been terrible – finding the handle with which to grasp such a problem is bloody hard.
I’m not going to get on a socialist soapbox here but essentially if we lived on benefits, in a council provided house we would be considerably better cared for. It makes you genuinely wonder why working is a high priority for you as a parent of a child with a disability.
Sorry to post such a negative toned blog but this is the reality. Sometimes it’s sunshine all the way, other times the world bites hard enough to make me realise that this last 4 years is just the start. My efforts to build some resilience for the future are at full tilt, but in the meantime there’ll still be horrendous weeks that land and have to be sorted out before the decent times start again.