The next week and a bit will all be about preparation, both for the children and the house as I try and make the immobile recovery period after my upcoming op as smooth as possible for us all.
The big, unresolved, issue remains getting D to and from school and it’s seeming more and more likely that she’ll have to receive work to do at home. It’s not ideal but I have to think of her safety and welfare.
Apart from that, there’s the matter of getting our house ready, making more space for surgically-booted feet and downstairs, wheelchair accessibility.
The first tranche today was moving around Hubbie’s and my bedroom, something you’d think would be okay as T and D have their own rooms.
D is usually in and out of our room, using a charger or reading a book, there’s always an early morning (too early sometimes) hug and a few squeals too. She doesn’t like the new layout. Her eyes darted quickly around on the one time she came in, taking into account the changes and, normally she’d be relaxed in there but today most definitely wasn’t.
Time will tell.
I’ve said it before, life with ASD can be very challenging (it is); at times a bit monotonous (for me, with the routines and the non adherence with what T and D will eat) and painful (when I get a whack when anxieties overcome either one) and sometimes we have very smiley moments.
Today brought one such moment. D has had her second week at after school theatre club – last year she lasted one season as found it overwhelming and the teachers have been taking account of her worries – and, this year, she’s enjoying it. I’m pleased it will definitely help with her confidence as well as mixing with pupils she might not have.
She walked down the corridor after the session with an I’m-bursting-to-tell-you-something face and, as soon as we were on our way home, she did.
They’d done the Conga today at the end, she loved it. Which was brilliant and had already made me smile, when she then said “when your foot has healed, can we do the conga on the way home?”
Sweet eh? Whilst she hasn’t grasped that my op incorporates both feet, she’s accepted (hopefully) that I will need a healing time and is thinking of fun things in the future.
It didn’t stop us having a mini conga through the “deep, dark woods”, which was interesting with an excited D behind me, almost as tall and intensely holding on! Fun though and another memory to bank and use as a conversational tool.
That lovely smile was still there too!
You would think that, once your child has a “label” – that diagnosis which will define further how others perceive them – that dealings bureaucracy would get a bit easier?
Everything feels like a battle at the moment and it shouldn’t.
What’s occurring then? And I don’t wish to moan but sometimes, it’s useful to offload and in a way that my children can’t hear, which would worry them and goodness knows they have enough anxieties already.
Well, home-school transport for D is nowhere near sorted and my op is two weeks tomorrow.
When I’ve quoted the following to council transport officials, the answer is still an immediate “no”:
“The Education Act 1996 (s.508 (B) and Schedule 35) contains the definition of an “eligible” child for the purposes of receiving home to school transport. If a child falls within the definition, the law states that the Local Authority (LA) responsible for them must make the necessary suitable travel arrangements so that he or she can travel between home and school. Importantly, these must be provided free of charge.
The law requires the LA to arrange free, suitable, home to school transport for children of compulsory school age who are “eligible” to their nearest suitable school.
Having SEN and or a disability is one of the criteria for being an eligible child.”
Sounds pretty straight-forward doesn’t it? D is unable to walk to school on her own, her lack of road sense, anxieties around strangers and her lower emotional intelligence mean that it’s just not an option.
I don’t want her to travel solely in a taxi where I have no idea if the driver has been DBS cleared, I want her to feel safe and secure and be around fellow pupils – just until I’m mobile again, so it’s not for ever – just an exceptional circumstance for a period of two months. We see the school buses going into school with empty seats, what difference does it make if one picks up another child en route?
For years, school were pushing the transport option at me, I felt in the minority because I chose to walk her to school, it’s sometimes been angst-filled (going past other schools) but we found a route to suit D and it was beneficial to have that extra bit of time together.
But now we need assistance and it’s just not there. The SEN children’s team seem guided by “computer says no” and have suggested that, because I’m choosing to temporarily “disable” myself (believe me, if I could I wouldn’t be), then adult social services should get involved – how that helps I don’t know, if anything it will disrupt our household more.
It just doesn’t seem fair. At a time when I’m already running (ha!) around like a blue-bottomed fly trying to get everything sorted for two weeks time, my mind is in overdrive because, fundamentally, my daughter is being let down by the authorities, over someone that shouldn’t be an issue because, as she has a “label” – according to both IPSEA and gov.uk – there shouldn’t be any question of her entitlement.
Look at this lovely face, this happy smile:
A smile that says “it was my dad’s birthday yesterday and we had CAKE”, a smile that tells me she enjoyed our meal out and that she very carefully wrote out the labels on her dad’s presents and added oodles of kisses (writing can be a chore for her so any little note from D is wonderful).
A smile that also tells me that she knows I’m having my op soon and whilst she doesn’t fully understand the implications of afterwards and my recuperation, she’ll be on hand for gentle (I hope) cuddles.
It’s additionally a smile that reminds me she’s relying on me to get home-school transport sorted out for the period when I won’t be mobile. The appeal has been submitted, I just hope someone reads it with a view to treating her as an individual, not a budget figure.
Above all, our gorgeous D, a happy girl today as that smile proves, ready with a squeezy cuddle after I got back from a meeting.
Hubbie’s birthday today and I always type this date and then think “argh, three months until Christmas!”, anyway …
The birthday boy has had a good day, a “yay” in that we all went out for a meal, to a place the children are very familiar with and which has booths, to prevent “escapees”. They always know exactly what they’re going to have too and, apart from something I me yon further down and T wanting to metaphorically click his fingers and get home immediately after he’d finished and getting a tad frustrated when the waiter was a bit tardy in bringing our bill, it was nice, really nice.
Want to see some pics?
The “floater coffee” option on the menu always makes me smile, even if I can’t be a gross mum and say why:
And, on a similar vein, these were well received:
Hopefully, these below will encourage turn-taking, D is mega-excited that there is some sort of mini Tipping Point machine included:
And a made-by-me to go with a present which hasn’t yet arrived:
The only slightly down note today was that whilst I think D will be okay (ish) with the upcoming changes around my op – namely I’ll be immobile for six weeks and hence meals/routines etc are going to be upset big time – I don’t think T will. He’s interpreted general discussion around it as me “nagging” (and I don’t!) and his attitude is “well, you’ve chosen to have this done, so deal with it”. It’s an example of just how “black and white, zero middle ground” he is, with very little empathy. It’s a concern and has the potential to snowball if “refereeing” isn’t swift. We’ll do the best we can.
The main objectives were achieved today, all getting out as a family and the birthday boy having a good day.
Happy Birthday Mr Bluecrisps!
That one word describes me not only tonight, but also this week, hence my #WOTW.
You see, I’ve had a day of rubbish customer service from a high street who managed to lose my personalised photo gifts I’d ordered for Hubbie’s birthday (he now knows they’re lost); of (our local buses have all changed their routes) getting a bus home from town, saying does this go along xxx?, being told “yes” and then it going somewhere else and just generally feeling like I have too much to do in too short a time.
Because….the news I’ve been waiting for since July came through, my operation appeal was successful and this time in three weeks I’ll have had my operation and – hopefully – be on my first day of recovery whilst looking down at my bandaged-up feet and trying to sit still!
It’s no wonder I’m feeling a bit “waaah!”. I’d convinced myself that the appeal wouldn’t be successful – it was easier that way – and so it was a mega surprise to get a positive result.
But now there’s lists and tons to do before 12/10. One of which includes trying to sort out the comments facility on here so apologies in advance.
There’s also some RB2C too, including that – hopefully – post-op and once I’m healed, I’ll be able to wear something other than the Clarks boots I’ve worn until they need replacing every autumn/winter/spring as nothing else is comfortable. Hubbie suggests we bury them in the garden but I think I’ll recycle them in the shoe shop (as we do with all our old shoes), at least they’ll be doing some good.
What else? Well I went to the Mad Blog Awards last Friday. It was great to put faces to names and it was a great evening, slightly hairy journey as the trains were all affected by the storms but well worth going.
And Saturday, D and I went with her friends to an ASD bowls and laser quest evening. It was fantastic.
So, one happy but very fuzzy J here, the fact I’ve remembered to join in but need to remember to link up is another “yay”, how’s your week been?
We have hit a big wall regarding bureaucracy and “computer says no” today.
It’s frustrating because yesterday felt such a “win” with a positive result to my appeal but trying to sort out transport to and from school for D – who’s registered disabled, in a SN school and entitled to it according IPSEA and Gov.uk – is proving a challenge.
The transport department have said “no” and the SEN department won’t help with any appeal either. To them, D is just a number and any entenuating circumstances are simply discarded.
We see transport buses going into school with plenty of empty seats and, as the local council criteria for new pupils means that they won’t qualify – despite IPSEA and gov.uk guidelines – the buses will get emptier as pupils get older and leave school.
As a time when I should be preparing for a) the op and b) how I recuperate whilst sticking to the routine the children need, I’m stressed – and so is D after she overheard me talking.
Lovely Deb at chaosinkent is seeking advice for me and hopefully that will assist.
To know that the law and guidelines are on my side but council departments refuse to listen/advise or abide by is frustrating.
Watch this space I guess…
Welcome to this week’s Small Steps Amazing Achievements, as Jane at @ourlitescapades and I co-host, the Linky is back with me this back.
Thank you to everyone who linked up last week, we enjoyed reading your posts.
If this is your first time reading this, you can find out about the Small Steps Amazing Achievements linky here, we do hope you join in. Posts can be old or new and please don’t forget to visit and comment on other posts too.
Here’s the badge code if you’d like to grab it:
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Jane and I enjoy reading and commenting on your posts and sharing them via the #SSAmazingAchievements hashtag.
Here’s Jane’s highlights from last week:
“After the summer holidays Monkey is slowly but surely getting back into going to beavers with @minnowmep,
Monkey and Little Miss are developing a lovely sibling relationship over at @BecomingaSAHM,
and @HappyLittleHugh underwent VNS Surgery, his mum has written a moving post about the operation”
We always find it difficult to choose a few to highlight as the posts linked up are so wonderfully varied, but you can always read them here.
Oh, I am a happy J tonight, albeit with a slight “ohmigosh ohmigosh” hint.
You see, I finally heard back about the results of my appeal for my operation ….. and it’s been approved!
I could not believe it when the phone call came. After being so disappointed when funding was first refused, I was in the mindset that it would be again, so that I didn’t get my hopes up at all.
So…in three weeks tomorrow, it will be happening. Ohmigosh indeed.
There is now the small matter (small?!?) of trying to source transport to and from school for D for the six or so weeks I’ll be unable to walk afterwards, preparing the children and getting everything done that I need to do, beforehand, because I’m not a “sit still” person and that is what I’ll find most hard, the fact I’ll need to listen to my body – or else.
I’d love to know how much impact the fact I’m a carer to T and D had had, as well as the benefits I outlined for my wellbeing, those together with the non-driver aspect must have all played their part. I’m feeling fortunate albeit with hints of nerves too.
I’m not telling D yet until I can get the school transport issue sorted, despite gov.uk and IPSEA guidelines saying that a SN child is entitled automatically to transport, the local council are not having it and yet we see the school buses passing us in the morning with plenty of spare seats.
For now though, it’s nice to have a feeling of “we did it” because bureaucracy does feel a bit of a battle most of the time, especially in SN matters.
Our girl had her HPV injection today and was “very brave”.
A relief after all the angst that she experienced with previous injections.
It probably helped that the injection was in a different site and she knew that today was a one-off – well, until next June anyway.
A good start to the week now I just need to know what’s happening with my appeal …