This morning was a difficult morning and it left me actually questioning whether I can cope with Jude at home full time any more. I think he get’s anxiety attacks when he knows something is coming up, i.e. his bus is coming to collect him, and he literally can’t cope with the wait so starts running round the house, moving things, throwing things, generally freaking out. The minute the bus arrives he becomes the happiest child ever, grabs my hand and runs to the door manically. It’s like relief from the anxiety. Same thing happens when he knows people are coming round, or we’re going to a particular restaurant/park/whatever.
Does it make me a bad mother to consider residential schooling or just a mother looking out for the whole family? I think everyone would be calmer and Elsa would definitely be more content but actually if you ask her, despite the amount they fight, she always says she wants him here. If you spoke to his father then he would say the I am a bad mother. This week alone I have been told by him that I do not give Jude enough attention and am constantly trying to “farm him out” to family and friends…but then he doesn’t understand parenting and picks and chooses when he plays the good father act. Rarely.
I made a concerted decision when I started this blog to never mention Jude’s father as he has no positive influence on Jude whatsoever and only sees him fortnightly for weekend visits. He was also rather nasty to me for a long time and made our lives hell so I prefer to focus on the positives and want to use this blog as a way of helping Jude (and everyone else involved) and mentioning him is only going to bring negativity.
But anyway, his nasty comments this week got me thinking. Do I spend enough time with Jude? I do as much as I can. Do I really “farm him out” to people? Of course not and I must not let this get into my head. Who of my friends and family has taken him out recently, except for my parents? My parents have also taken Elsa out individually BECAUSE THEY WANT TO; does this mean I farm her out too? I know as parents we are left feeling guilty about everything but usually, the other parent of the child does not berate your every move. I’m lucky I have a supportive partner who the children adore but there are many parents of disabled children who are doing this alone and it’s not easy. How do people cope? Do they just use the council support? I emailed my Social Worker this morning in a bit of a panic, following the morning from hell and he has referred me to someone else because basically, he isn’t now my Social Worker. He works as an Assessment Worker within the Short Breaks Reviewing Team apparently. How confusing. He did explain that it is possible I won’t get what I want (I prefer the word “need”) but I will be listened to (how kind) and there is other support out there for me…the plot thickens! I will let you all know what happens.
So, residential schools. I regularly get asked if Jude boards at school and am always surprised by this question. Of course he doesn’t, he’s my son. But actually, in reality would Jude be calmer and more content boarding? I wouldn’t have any of the waiting-for-the-bus anxiety. Ditto anxiety about any activity we are waiting to happen so why not consider residential. He would get soooo much attention, constant stimulation and fun activities on tap. But then I think about things like bedtime and how I’d hate him being anywhere other than safe at home. I have looked up lots of residential schools around here and there are loads but needless to say the council are only willing to fund something like this in extreme situations, even weekly boarding is a last resort.
I found this a comforting read, well apart from the bit about transitioning from school to adult care.
I am hoping that I will be able to independently help him move into adult care as they are reputedly a bit of a minefield of good, bad and horrendous. Adult care fills me with absolute horror if I’m honest and my ideal scenario is Jude being able to live in his own flat that we can buy with Support Workers 24/7. Expensive, yes but worthwhile indeed. Does anyone have experience of moving someone into adult care? I know it’s a long way off but to be honest, these past ten years have flown by so I don’t doubt the next ten will too.
So in a nutshell, I’m in a very contemplative mood this week. Deep down I wouldn’t send Jude to a residential school as I think I can cope and ideally he needs to stay at home but then realistically, I need to work out where he would be happiest. Perhaps weekday boarding? That would be a good compromise and I genuinely think he would love it but the guilt would get to me. Mother’s guilt! Something to think about I guess but the power is not in my hands so I await a call from my new Social Work team. A x