Wednesday, 29 June 2016


So...I was Parent on Duty today and my call came at silly o'clock although it wasn't as silly as some o'clocks I have known. Jboy was in fine fettle..raring to get on with the day. Wearily I followed suit, slightly less raringly. We followed the normal morning routine of breaking our fast with cereal...gluten free oaty delights for Jboy and something lumpy and crunchy and purportedly healthy for me. Then I made the sandwiches and Jboy had his compulsory sandwich cast offs after which we headed for the bathroom for the first of the day's ablutions. Whilst sitting happily in the bathroom, waiting for the water to be just at the right temperature with the optimum amount of bubbles, Jboy decided to launch one of his last remaining battery powered toys (a fire engine with a rather splendid operatic voice)into the foamy waves. Alas and alack Mr Emergency, as we like to call him, has been rendered silent and his fine operatic rendition of such ditties as "emergency , emergency lets go and fight the fire" are no more. He is sitting, dripping silently and forlornly, with an occasional hopeful prod by Jboy. Jboy can exhibit signs of unexpected cleveritude but when it comes to baths, bubbles and toys, his cleveritude dissipates like the bubbles in his bath. Ah well, on with Wednesday.
The End
Ps the most marvellous word 'verisimilitude' is my favourite today.

Monday, 27 June 2016

Merry Monday

So..another weekend has come and gone. What larks, what frolics did we get up to this weekend??? Well, if I gave you a guess I expect you would be to hazard one.....yes, we went to a garden centre. After much huffing and puffing by the Boy, we managed to encourage him into the car and off we went. This particular garden centre has fish galore..Jboy headed straight for this section, leaving M and I gasping for refreshment after what had been a rather fraught morning. Once Jboy's fishy fancy had been satisfied, he was happy to venture to the cafĂ© where we indulged in a large bowl of coffee apiece (well, not Jboy...he doesn't 'do' coffee). M and Jboy both had an enormous bacon sandwich while I sat virtuously and watched. No I didn't!!!! I scoffed a huge slice of Victoria Sponge!!! We then meandered around the garden centre, M and I resisting the pull of many a flowery treat until we felt it must surely be time to go home. Jboy did not agree. Then ensued a small battle of wills, won by M...eventually. In silence, all words having been extinguished by the battle, we drove home. After a little while of being IN, Jboy decided that he needed to be once again, we gathered up his bag of essentials and set off , on foot this time, into town. We followed out normal town routine...M and jboy stood on the square while I was sent to find a seat in the coffee house of Jboy's choosing...this time the one which rhymes with CarTrucks..and awaited the arrival of Man and Boy. I did not have long to wait. I managed to get Jboy's preferred seat where he can watch traffic from all directions with ease. And so our Saturday played out.  Sunday dawned.With it (although not at dawn) came the arrival of a dog (and owner) for a visit. Jboy was ,at first. somewhat anxious about said dog, Then he became interested and finally enamoured. He spent a goodly amount of time following the dog, laughing at the dog and eventually showing his delight in the dog by trying to sit on its lap, not quite realising that dogs do not have laps in the same way as people do. The dog was very tolerant. Jboy flapped his cloth at the dog, stroked the dog, tried to pull the dog's tail and generally loved the dog until the poor creature took refuge under the table. When at last the dog departed, Jboy fell into an exhausted sleep, possibly dreaming of hounds.
Today, we had an early start. I was Parent on Duty...Jboy was breakfasted and bathed and Bob the Buildering by the time M stumbled down the stairs. When it came to be time for the Bus Vigil on the Pavement, Jboy and I were weary. The bus arrived. The Right Bus. The Right Driver. The Right Escort. I said my goodbyes and scurried into the house. I hadn't even reached the chair in the bay window when Jboy got on the bus and was seated in position..I was just in time to wave a cheery wave. Result!! long may it continue.  Now it is 12.25 and I feel need to have a if you will excuse me I shall find a cosy corner and have a delightful snooze...
The End

Friday, 24 June 2016

friday frolics

So....the United Kingdom has voted to leave the EU,eh?...well, almost half of us didn't.  Almost half of us voted to remain and be part of the larger European family....

life goes on......

So..the Most Marvellous Mr A at the Most Marvellous Day Centre has come up with a cunning plan. A Most Marvellous Cunning Plan at that. He has suggested that when the Right Bus arrives, I hand over the bag containing all Jboy's essentials for the day, wait for the Most Marvellous L (the excellent escort extraordinaire) to get off the bus and then I scarper. This is did, this very morning. A quick kiss and a cheery cheerio and I was off. I legged it back to the house..where of course I stood on the chair in the bay window so that I could watch the pavement progress progressing. (I have to stand on the chair otherwise I cannot see over the bushes which we have growing outside which take the place of net curtains or opaque windows). I watched as Jboy stood about for a bit, presumably wondering what on earth was going on, then calmly walked to the bus ...AND GOT ON!!! No wrestling. No pavement rolling. No fence sliding. The Most Marvellous L and I ,grinning like Cheshire cats, waved at each other like wild waving things as the bus pulled away, bearing my contrarywise fellow for a day of fun and frolic.
Friday fun
The End

Thursday, 23 June 2016


So....I haven't been here for the past week or, as in on this blogolette...I have been 'here' in the metaphysical sense.....Why? I hear you cry? What has happened, oh beleaguered one??  Well, I have many plates to spin, not just those of Jboy and these other plates have been wobbling dangerously and causing me some concern so I have been attending to them.  It has been a tricky time and continues to be so but I am calm and sure that Right will win out. Enough of that.
I have been asked to help out at a mother and toddlers group for Children with Otherabilities so today was our training session.  I felt very much like a spare part....I have lived this life, after all and am still living it. It felt weird to be 'on the other side' so to be on the giving rather than the receiving end of things. Although to be fair, such groups did not exist when Jboy was little...we had to go to ordinary groups and try not to spend the whole morning in tears!! Or do what I did...and not go at all!! Each child is different.....just because a child has a label of 'downs syndrome' or 'autistic' doesn't mean that you understand ALL children who are Downs or Autists..each child is as individual as every 'ordinary' child. Saying 'they' (ie Downs children) are so loving aren't like saying 'brown haired children always eat too much chocolate' cannot generalise. Not that anyone did this morning at the training session, I hasten to add. I am a little anxious about being involved in the group tbh..will I just cry??? Because such a group did not exist for me and my Boy? For all the exhausted parents who come to whom I cannot say 'it will get better' or 'it gets easier with time'??? It gets no just adapts.  Can I say that? Can I be honest??? maybe I will just make the teas and coffees and smile like an ancient old crone.....and hand out tissues as and when......
The End

Thursday, 16 June 2016


So...I read a post on FB this morning as I sat, drinking my flat white(oh, I am so trendy)(clearly I am not by dint of using the very word 'trendy'). I was in a cafe of a well known coffee chain whose name rhymes with hosta. It made me cry. No, not the flat white nor the fact that I was in a coffee chain rather than a dinky independent coffee house, but the FB post. It was a piece written by the parent of a child with Downs Syndrome. I am going to assume for ease of writing that the parent was the mother although it could just have easily been the father...I try not to be parentist. The mother was writing about all the staring and whispering that goes on when one is out and about with one's child(however young or old) who has learning difficulties or Other abilities. Sometimes, as a parent you can cope with it and sometimes it is just too hard. For this particular parent on this particular day, she wasn't coping well with it as she sat in a cafe, trying not to listen to the whispers and comments coming from a nearby table. As she sat there, another figure approached her. Her immediate thought was,'Oh no..what now??'. The stranger proceeded to congratulate her on the wonderful job she was doing and how delightful the child was and how proud she should be of her beautiful, precious, lovely child. This comment, from a complete stranger. left the mother in tears. Me too. These positive comments are like the proverbial 'hen's teeth' when parenting an extraordinary person with Other abilities. The whispers, asides and grimaces that we have faced are too numerous to count. One develops a thick skin but sometimes that skin wears thin..we are only human after all!! It doesn't cost anything to be positive and can be worth immeasurably more to the person to whom you are saying it.
So, sniffling and snorting, I finished my flat white and sauntered home...
The End

Tuesday, 14 June 2016

all in all..not feeling marvellous

So..the idea of this blog was, originally, for me to write about life with Jboy and to get out all the feelings and emotions and realities of life that having a son with profound learning difficulties bring..but actually it isn't that easy.  I try to be completely open and honest at all times, trying to show how hard it actually is without being depressed at the same time. Sometimes I just want to be depressed and sink into my own pool of murky feelings and wish it was different....but then I feel so guilty because others have it so much worse than me/us. I feel , like many people before me, that I am spinning a bazillion plates and they are in danger of falling around my ears, crashing down in a great cacophony of shards of my life. So I don't always write everything. Why would I??? Today is one of those days..I am fighting that old black dog today. He is gnawing at my ankle, trying to win me over. I am still determined that he will not win but it is just so hard to fight all the time.
It isn't just Jboy but many other things that threaten to overwhelm and consume, adding to the chaotic spinning.
So, I shall go and do my best to shake him off, keeping at least some of the plates spinning and endeavour to write something more upbeat another day.
The End

Monday, 13 June 2016

red bucket!!!

So..another respite weekend has come and gone. We had a most marvellous time celebrating two birthdays..M and DG. There was much eating of cake and blowing of bubbles...a jolly time was had by all. We went out for a meal on Saturday evening and DG looked SOOOO beautiful and grown up..where have those years gone?????
As it was a respite weekend, we spent quite a lot of time in the garden which is an activity which Jboy does not like us to do. There we discovered not only deer poo and badger poo but also fresh hedgehog poo. We were perversely thrilled about the latter and less so about the former.
Today I bought myself a red bucket. My cup overfloweth!!!!
The End

Friday, 10 June 2016

another respite.....

So..Jboy decided that he WOULD get on the Right Bus today, after about two weeks of refusing and generally rolling around on the pavement. We, the Right Driver, the lovely escort and I, were preparing ourselves for the usual 15 to 20 minute delay as he has been indulging in a fair bit of refusnikery of late..but today, he climbed aboard, chuckling and smiling. And they say he is not unpredictable!!!  This weekend is one of cheese and TV without subtitles as it is a respite weekend. To celebrate I bought cheesy topped bread and a Will Smith DVD....oh, joy untold! Maybe the fact that Jboy was going on respite was enough to spur him onto the bus with nary a backward glance. Who knows???? Not I! I have had a bit of a purposeless day, wandering hither and thither, unable to settle down to anything much. Velma, our intrepid vehicle, has been very poorly and needed to spend the night at the garage to be mended. At great expense, she is returned, feeling a bit sorry for herself.  I have been carless....not that I use it overly, but when I cannot, I feel the lack! I also often spend the first day of Jboy's respite feeling restless and misplaced. I also feel a lightness of spirit and a sense of relief which I then feel guilty for feeling...oh, the agonies of parenthood! It's a weird old thing....this parenting lark!!
On that happy note, I shall crack open the cheesy topped bread!!!
The End

Thursday, 9 June 2016


So..UPDATE!!! NEWS FLASH!!! The Most Marvellous A at the Most Marvellous Day Centre has just phoned me. He has made a million phone calls on our behalf and everything has been sorted!!!!!!!! I WAS at the review...but the review was 9 months I had forgotten it! The wording of the letter clearly stated that Jboy was not complex, unpredictable or intense enough and 'does not meet the eligibility criteria' but what they meant, apparently, was that the funding would remain the same!!! They were saying, in fact, that they wouldn't be awarding any extra funding.....shame they didn't just say that. We hadn't expected any extra..the same is just lovely, thank you very much. SO.... Sorry to have aroused the passions of so many of you marvellous, wonderful, caring and lovely people. I can't tell you how amazing it was to read all your comments and to feel your support. The relief in this house is now palpable!
The End
PS i even had my campaigning hat on today and was ready to get going.....I shall save it for another time as inevitably there will be one!!!!

Wednesday, 8 June 2016

funding cut.....what next?????

We had a letter this morning telling us that after Jboy's review (what review??? I know of no review), half of his funding for the MMDC will be cut. Not sure of the implications of that surely isn't good news though

Tuesday, 7 June 2016

Jboy and the early start

So..I have been awake for a Very Long Time on this hot and sultry day. Jboy seemed to think 2.35am would be a good time to start the day. He has been waking at a slightly later hour most recently which has made commenting on the early mornings they weren't (too early). Today, however ,we resumed crack of dawn patrol. Then, to compound the day, the Boy decided that getting on the bus, Right as it was, was NOT the thing to do today. We had an intense' conversation' about it and eventually, after many minutes, he saw the folly of his ways and reluctantly climbed aboard. Hurrah for the patient most Marvellous Driver and the Luscious Lovely escort!! They are not allowed to intervene but I could feel them cheering me on!! Once he had deigned to climb aboard and the bus had driven off, I continued with the day. Today I have been mostly planting . I ordered a load of 'plug' plants from a cottage garden nursery. They arrived today looking very sad and sorry for themselves...and terribly , terribly small. So I installed them in their place and . hoping that they do not prove to be an aperitif for the deer, they will one day look splendid. Tomorrow is M's birthday. Hurrah for M. As he does Not Do FB, I can reveal the fact that part of his present is an elephant. Not a real elephant. That would have been tricky to keep hidden. He made mention in passing at one of our garden centre visits that he rather liked the look of a stone elephant. Unbeknownst to him, I returned to said GC and purchased little Jumbo. (Jumbolet?). Here's hoping he meant it!! Or Jumbolet may be consigned to the depths of the shed and that would such a shame. Jboy returned home at his appointed hour, having had a similar 'discussion' with the staff at the Most Marvellous Day Centre about getting on the bus, despite its Rightness. Ah well. Unpredictable is his middle name. (Clearly it isn't )
Now, I must prepare The Potato.
The End

Sunday, 5 June 2016

Sunday scribblings we drove through the rolling landscape of our rural county,passing fields of sheep (we once had visitors from Germany who always referred to more than one sheep as sheeps...and thus it has since been in my mind) and those bright yellow , almost neon yellow, fields of oil seed rape which were once so alien in our landscapes, a foreign invader, but which now are a normal part of this time of year. It was promising to be a lovely day and we were headed to a garden centre (of course). As we went along I was thinking about the passage of time and how nature is a great marker of the passage of time. I have a calendar to help me with that too..not an electronic one, I am not technologically savvy enough for that. No, my calendar is a Moomin calendar, on the pantry door. Why Moomin, you might wonder?? Why not, I riposte!! It was a present from M for Christmas..well, truth be told, I bought it and he wrapped it to give to me, so the choice of a Moomin calendar was mine alone!! I can blame no one else. I prefer the solidity of a real calendar much as i prefer a book to an electronic read really. I like the feel, the smell, the texture of a book. Apparently, books, as in the real paper things, are now becoming a status symbol..according to radio 4 , so it must be true!! A symbol of what status I wonder? Books have the added bonus, for us, of not breaking if and when Jboy throws them!! On the theme of generally being an old stick (paper calendars, paper books etc), there is a move towards 'greening' of driveways. We are doing quite well on that fits nicely with our general view of life. well mine. M is much tidier than me. Our drive was, today, awash with the buzzing of bees on the plantery that has colonised the top bit of the drive and I can even pretend it is deliberate for it to look like that!!! I win!!
The End

Saturday, 4 June 2016

Potting up

So..yesterday I was mostly planting. In pots. M has removed the brick bike shed and the space was begging to be adorned and loved in the form of plants in pots. My days are short..well, shorter than the average (bear....Yogi Bear fans will get this) since Jboy goes anytime between 8.45 and 9.30 and is returned between 3.20 and 3.45 so I have to do all I need to do , which often turns out to be a lot, within those time parameters. I have been doing it for years since those are roughly school hours here I am, aged, silvery haired and STILL working to school hours!!! Yesterday I decided, after the obligatory supermarket visit to replenish Jboy's stock of Free From Everything cake, to Do the Planting. This involved running up and down the garden with the wheelbarrow to gather compost from the heap at the bottom (and our garden is fairly long) then potting up the multiplicity of pots which I had decided needed to be there!! It took several journeys and a lot of digging and heaving but all the pots are complete and in place. At the moment, some of them are looking a bit shocked, having been torn from their comfy little pot and shoved into a larger pot which they are having to share!! I managed to complete the task by 3.10 which gave me time to wash my hands and make a cup of tea before the evening onslaught of Jboyness. He has yet to see the plants and will no doubt comment on them in his own way, as if to say..'Mother, what have you done NOW!' In other news, I found a birthday cake which is Free From Everything and therefore suitable for Jboy to share is M's birthday next week and we will all (all three of us) will be indulging in a hopefully delicious slice of something which looks remarkably like cake...let's hope it tastes as good as it looks!
Today is Saturday and no doubt the delights of a garden centre await....
The End

ticket to adventure.....

So... Jboy and I found ourselves, pinned to the settee with excitement and anticipation this morning as we watched an episode of Ben and Holly which we had never seen before. For those of you who care, it was the episode where Ben and Holly et al are stranded up Mount Everest. It is the episode which involves magic, a tent in the shape of a castle(A CASTLE!!!) and a certain amount of pre-school peril, which was ,of course , ultimately resolved. (Phew!) What's not to like???? No wonder we were pinned!! They declared that it was a most marvellous adventure(my words, not theirs!) which naturally led me to thinking of the word 'adventure' and all things adventurous. The root stem of the word is, I believe, of Latin origin 'advenire'..which means, if memory serves, to arrive. So an adventure is something which is going to happen. My dictionary says 'adventure' means unusual and exciting or daring experience:2.•a reckless or potentially hazardous action or enterprise: and 3. an exciting experience. I have concluded after great deliberation(alright, after the couple of minutes before Peppa Pig came on the TV to entertain and delight) that adventure must surely mean different things to different people. For us, an adventure might , these days,be discovering a new garden centre which Jboy will go into!! For parents of small children, the adventure might be having a bath ON ONE'S OWN! Maybe the adventure could be walking the Pennine Way (Susan Hammond). I was once in a group of women, most marvellous of course, who met weekly (and sometimes weakly). At one point I made them all a Ticket To Adventure (say this in portentous continuity announcery tones) as a simple reminder that every day is a new one and therefore an adventure. And yes, life does tend to be the same day after day for many peeps but , when I remember, I try to find the adventure within that! So what is your adventure? Getting up can be an adventure when all you want to do is hide under the duvet, Going into a new place can be adventure if it isn't something you like to do. Walking the Pennine Way? Deep sea diving? Going to Sainsburys instead of Tesco..or vice versa...whatever your adventure is, enjoy it, delight in it.....let's do this!!!!
The End

Wednesday, 1 June 2016

another day, another dinner

So...another day...another dinner. What permutation of potatoey delight shall I serve Jboy today? Since he can only reliably eat baked or mashed without dietary consequence, I don't have a lot of leeway. I have been out all day AND it was my turn to be Parent on Duty so any inspiration re:potatoes has long since disappeared! Sigh...once more unto the breach, dear friends and If not the breach, certainly the kitchen.....potatowards I go......
The End
PS the Most Marvellous Social Worker in the World has contacted me to admit defeat on the 7 hours a week front.Apparently the Boy is too challenging and the task too daunting...what is it they say, it's the thought that counts!!!!!