Well, in the immortal words of Ozzy and Kelly Osborne – we’re going through changes. Mainly the new giant chuff-off hole in the middle of our hallway:
So, you know, that’s fun. Especially when you have a toddler who thinks he’s in the SAS. Ant Middleton could learn a thing or two from Squidge.
As you can see, the garage reno is in full swing. We were hoping it would be boxed off by the end of summer, but I think that may have been a bit ambitious. However, it is getting there. The summer holidays have been ‘interesting’ as Squidge is terrified of every noise the builders make, yet is obsessed with them in equal measure. I have spent a lot of the time making swift exits from the house when the drilling starts and hot footing it to a park/swimming pool/my lovely In-Laws house/anywhere there is not drilling and/or stopping him from jumping into a cement mixer/climbing a ladder/picking up a large drill…
The end of this project cannot come fast enough – no offense to the builders though, as they really are very lovely!! But, aside from the fact that our house looks like a tornado has rampaged through it, T is really really struggling now. His legs are giving way much more frequently and he seems to be experiencing pain in his knees and back. Truth be told, he has pretty much given up on walking independently. We had a bit of a chat about it today, and he said that he worries so much about falling that he doesn’t even want to try walking on his own anymore. Even when we support him now, we more or less have to take his full weight to help him walk. I think the wheelchair may become a permanent fixture when his downstairs room is complete. This makes my heart hurt. But, I know it will make him happier in the long run. At the minute, his preferred method of maneuvering about the house is the ‘bum shuffle’. He can pick up a bit of pace when he puts his mind to it! Plus, in his words, it “takes away the worry”. Big up the bum shuffle.
Something else which has recently changed, is that T is now classified as a ‘Child In Need’. Which I can’t say I’m overly happy about, to be honest.
Those who have been following the blog for a while may remember that when T came to the end of his Art Therapy, his therapist recommended a referral for a P.A. This would allocate some funding to provide T with a ‘Personal Assistant’ for a few hours a week to get out of the house and do some teenagery things without me and J dragging down his street cred. This would also support our quest to make him a bit more independent and able to live a fulfilled life. Winner winner chicken dinner. Or so we thought…
I think T’s therapy ended in September of last year (if I remember rightly), and the referral went in at that point. We heard nothing until about a month or so ago when I received a phone call from EHASH. EHASH stands for ‘Early Help and Safeguarding Hub’. As a teacher, I have an awareness of EHASH, but mainly in the context of concerns surrounding a child and/or their welfare. When my phone rang and they said who was calling, I think my head fell out of my bum. (there’s a bit of imagery for you readers, enjoy that one) I immediately thought that someone had raised concerns about T and our parenting. Turns out I was just having a massive fanny fit for no reason, and that they are actually the central point for any kind of referral relating to children. Noone, however, had warned me about this!! So. Once I had reattached my head and could hold a coherent conversation, we established that a member of the Children’s Disability Team would be in touch…
Cue my conversation with Clive*. Things initially were a bit frosty with old Clive over the phone:
Clive: It’s Clive from the Childrens Disability Team.
Me: Oh! Are you calling about the PA referral?
Clive: I think I’ll be the judge of what support is needed.
Me: Well Clive, as it wasn’t us who put the referal in, so maybe you need to pipe down and take it up with them, rather than biting my sodding head off. (I didn’t say the last part, I just thought it. Actually, what I thought was more sweary.)
After our rather shirty exchange, we arranged a face-to-face meeting a few days later. I can’t say I was looking forward to it. It turns out though, that we are big Clive fans! Hurrah for Clive! His sense of humour is drier than the Sahara, and he appreciates that we communicate in sarcasm within our family 96% of the time. He’s a good match for Team Riley. He was perhaps just having a bad day when I spoke to him on the phone…
Anywho, I digress. I assumed that our meeting with Clive would be short and snappy – a chat about the PA process, fill out a form or two, then Clive would dash off into the sunset and T could begin his journey towards ‘Parent-less Adventuring’. Oh, how wrong I was. How very very wrong I was.
It turns out, that in order to get the PA funding for T, we have to have a full social services assessment. T has to be seen every 4 weeks by Clive the Social Worker, and they need to go through everything from our parenting and family tree to our finances and social activities. Henceforth, T is classified as a ‘Child In Need’ until the assessment is complete and it’s ‘been to panel’. To clarify, a ‘Child In Need’ is defined (thank you Google) as:
A child who is unlikely to achieve or maintain a reasonable level of health or development, or whose health and development is likely to be significantly or further impaired, without the provision of services.workingtogetheronline.co.uk
I can see how we fall into this category, but again, my experiences with this title have generally been for very different reasons. An alert will be sent to T’s school to notify them of this change in status, and Squidges nursery may also receive a notification. I’ve had to tell our close family that they may be contacted and questioned (I don’t know if they will, but I didn’t want anyone to panic if they were).
Clive established early doors that our case would almost certainly be rapidly closed as soon as it had been to Panel, and that the expected outcome would likely be the funding for a PA. But, in the meantime, we now have a lovely new public label that comes (rightly or wrongly) with a whole host of connotations and assumptions. And our life is under scrutiny. For what? Trying to help our son? In addition to this, the assessment process will probably take in excess of 8 hours (we’re about 2 hours in so far, and we have another 2 hour block booked in for tomorrow). Then there will be the 4 weekly visits on top of this until the case is closed. It’s not Clive’s fault (at all), but, as we are discovering time and time again, the systems in place to support young people like T are outdated and flawed. I’m disgruntled and frustrated.
I think after the battle with the funding for the house, and the battle for the wheelchair, and even the battle for the diagnosis, I am just done with fighting. Jackie Chan has left the building. I can kung fu fight no more…
But I will. Because that’s what you do.
So, I’m off to get my war paint on ready for round 7353557302 tomorrow with Clive, and his probing questions!
I’ll leave you will a few pics from Summer so far. Oh, and Squidge had a birthday! He’s 3! (He also had a complete emotional breakdown this morning because it was no longer his birthday. He’s an actual vibe this kid)
The Rileys x
*To be clear, his name is not Clive. I just like to maintain people’s privacy if we don’t know them well, and keep an air of mystery around things…