Yesterday, Jude was visited at school by our SEN Officer. I didn’t even know we had one of these until I called the social care department (again) a fortnight ago and was told that my email had been sent to our SEN Officer and I needed to wait until I hear from her. You probably don’t remember but I sent a request via an email address given to me by the social care department for Jude to attend weekly boarding school. I promised to show you the email which I haven’t forgotten, I just wanted to get the ball rolling and not jeopardise everything by publicising something so potentially important.
I think I’m being generous actually, I sent the email four weeks ago and chased it two weeks ago. I still haven’t had a call or even an email of recognition from my SEN Worker but to her, I guess we are just a case. There is literally no care there whatsoever. No “just give me a couple of weeks but I promise I’ll be with you as soon as I can.”
I’m back feeling rather disillusioned by the whole system and utterly exhausted. It isn’t there to help families like ours, it’s just a game. A money spinning battle in which the parents beg, plead, fill in endless papers, attend patronising meetings and have hope-filling visits from “professionals” all to be told that no, you can’t have what you want. It’s always to do with funding.
I hate to be so entirely negative but what extreme lengths would it take for them to finally listen and realise that I know more than they do as to what Jude needs. I know what our family needs. I’m actually going to the doctor next week as I think my stress levels have reached the level when it’s affecting my well-being. Will they listen to me then? Probably not as they just don’t care.
We were awarded additional Support Worker hours a month or so ago however, they are no good to us. At present, Jude goes out with his Support Worker every other Sunday for four hours and he loves this. But the stress leading up to this event is literally too much and I don’t think I could put myself through this another time in the week. The night before he is over-excited and anxiety-ridden and the energy build up in the morning is almost aura-like. To be honest, I did try to use the hours by advertising for a Support Worker to be with Jude a few hours in the week and then another couple when the school holidays kick in but no-one I really liked that much applied and that vulnerability your expose yourself to when inviting people in to help care for your child is immense. I’m basically saying to a complete stranger to please come and help me with my child as I can’t parent him adequately myself. It’s horrible. I feel like a failure.
So the SEN Worker going into school yesterday is our first step in my wish to send Jude to a boarding school during the week. Our weekends can then be family oriented but our weeks calmer and Jude’s week social, all encompassed in one place, full of people helping him, giving him that chance to use his initiative, build confidence and independence, etc. The benefits for him are endless.
She is basically there to talk to his teacher, to find out if they think traditional schooling is working for Jude. I have to say that I’ll be sorely disappointed if they say it is. I can’t see how he has progressed over the last few years, it’s more a form of habitual routine for him even though he always tells me he hates school. He doesn’t need school school, he needs a more therapeutic approach. Support in working out how to take the bus, how to pay for something in a shop, how to make your lunch, how to engage socially when school is over and you have time with your friends. What he doesn’t need is geography, history (he doesn’t really understand time at all) or science. They are literally pointless and when I ask what he’s done that day at school, he has no clue at all.
We need to be realistic here and as much as I want him to excel in life, we all have our own reality.
I love Jude very much, I just want what is best for him.