Saturday 30th June

Our day didn’t begin well. It was a little bit out of routine and D didn’t handle it well, very over-sensitive for parts of the morning, very non-negotiable until…she saw the butterflies!

Yep, we have butterflies, finally (if you didn’t see yesterday’s post, two emerged). Over the course of the day three more have emerged from their cocoons, we actually saw one coming out and it was fascinating! They come out with teeny tiny wings which suddenly grow as more sunlight is on them. We’ve all been watching them a lot today, they like to open their wings in sunlight and do seem susceptible to noise. If the others haven’t emerged tomorrow – and it’s less windy – we’ll release the five butterflies tomorrow afternoon, it wouldn’t be fair to keep them enclosed for longer. Here’s some pictures:

D has really loved watching them, she does have an affinity with butterflies, if you read my “Blank Screen Anxiety” post (type the words in the search bar at the top), you’ll find out more.

She helped us in the garden this afternoon, with the sweeping of chopped lavender/grass etc. Started off with the broom upside-down, bless her, but was receptive to being shown the right way to do it. When Hubbie tried to help her (speed the process up), he got told – very firmly – “no Dad, this is MY job, Mumma asked ME to do it!”

She was very proud of helping out and said that it had to be written down in her news 😃.

The rest of the day she’s been monopolising my phone/playing with her Playmobil. A far cry from the grump-master of this morning.

She has a terrific memory for adverts from the TV, ones that anyone else would discard, and she’s been saying this one a lot:

“Love is being safe & sound, love is being loyal, love is being cuddled”

It’s from an advert for “The Dog’s Trust” but it applies to everyone, doesn’t it?

So, my little gardener/butterfly watcher/advert reciter is happily settling now. I hope everyone’s had a nice day, thanks very much for reading and comments/RTs as ever welcomed Jx 😘

Tonight’s end picture is via Bev @hodgesclan, she’s sent me lots of wonderful pictures, which are going to wing their way onto here as end pictures:

Friday 29th June

We’ve had a really good day today, I think D is very relaxed now that all the sports day preparation and practice is over and normal routine is back at school.

We stopped off at the playground after dropping T off at his school, D definitely has Hubbie’s head for heights, not mine!

She walked about 3/4 of the way, most of it was spent hiding under my cardigan behind me – not out of fear but giggling! It was during one of these times that she must have dropped Bunny – nightmare scenario 😱 – as we found out once we’d got to her school. Fortunately she accepted that I’d go off and look for Bunny and bring her back with me at the end of the day. Bunny was found – mega mega phew – about 5 minutes walk away and I phoned school to say could they please tell D that Bunny was okay.

Bunny had a great day – well, for a stuffed toy – she spent the morning in my handbag and the afternoon in the washing machine! Well, it’s such a trauma to get her washed and out of D’s grip for any length of time normally. This is Bunny outside D’s school, she did today’s “musical walking tweet” too:

D came out DELIGHTED to see her Bunny and very happy with her day, she had received the Bunny message. She’d tried cricket in P.E. and enjoyed it! She had also spent the afternoon telling everyone they were either pretty or handsome, depending on gender. Another dad, who was there to pick up his daughter, said hello to us and D replied with “hello handsome”, he blushed! The lollipop lady got told she was very pretty too. Hubbie, T and I were complemented so much I thought our heads would swell, we’ve told D she’s wonderful and gorgeous too!

She’s done some very positive drawings tonight in the tiniest passport book from her “Justin’s House” magazine, too tiny to photograph.

Lots of YouTube of Angry Birds Space as per last night too, the Manah Manah song is having a little break.

Butterfly watch – day 29 🌸🐛🌸:
I came back from the nursery run at lunchtime to find two butterflies – applause & cheering time:

I presume the other 8 will follow suit over the next couple of days as it took 2/3 days for them all to cocoon. The aim is to set the majority of them free on Sunday so T and D can observe them hopefully spend some time in the garden before flying off – weather permitting!

Very glad they’re starting to emerge and are okay. Glad also that they’re in their tented area – the cats are fascinated by them!

Last photo tonight comes via Bev @hodgesclan, we share a mutual love of butterflies:

Hope everyone’s had a great day, comments/RTs as ever welcomed, thanks for reading Jx 😘

Thursday 28th June

D has had another brilliant day, buoyed on (I think) by yesterday. Of course if she hadn’t got her medal(s) it may have been a different story, but it wasn’t so…*big grin*.

She walked about half-way to school and was delighted to be accosted by a cat that we sometimes see on the way. It leapt over two garden fences to get to her, we could see this frantic cat bobbing up and down over the fences! D likes it because its colouring reminds her of one of the guinea pigs.

When we got to school, she opened her classroom door and walked straight in – no TA needed to coax her in, no signs of anxiety. I can honestly count on one hand the number of times she has done that since last September, she was very keen to show her Thursday-Friday teacher her silver medal. I said goodbye and left very happy. A good start like that really sets you up for the day. Something as simple as going through the door well may seem insignificant to some, but when it doesn’t normally happen it’s a massive bonus!

She came out well at the end of the day too, very sweaty but very pleased to see me. As it was “full buggy day”, we got her an ice-cream from the van as she’d have to walk. There were other (big) children there so she did a bit of tree-hugging whilst we waited and then her turn, the ice-cream man always asks if she wants her “usual” and that makes her laugh 😃

The ice-cream – melting as it was – distracted her nicely from the people walking past etc.

These are a couple of pictures she did at school, the first one shows that she read & followed instructions – that doesn’t happen often, usually she just colours them – and the second one is of medals, if you look closely you’ll see she’s numbered them.

She’s had a nice evening at home, a bit of bouncing on the trampoline, a lot of watching the “Angry Birds Space” trailer on YouTube, over and over again.

Butterfly watch – day 28 🐛🌸🐛:
Sound the klaxon! We are nearing butterflies!! If you look at the caterpillars on the right-hand side, two are definitely darker. This is the stage they reach a day or so before they emerge as butterflies. Exciting stuff! So…hopefully we should have some butterfly pictures on Saturday’s blog.

So, we’ve had a really good day, hope everyone has too. Comments/RTs as ever welcomed. Jx 😘

Tonight’s end picture via @NiciJT4Autism, thanks N xx

Wednesday 27th June

The day of D’s sports day and how wonderful it has been 😃👍

It didn’t start off that way – naturally, thanks autism – as she was very anxious about sports day and it took her TA, plus her teacher to get her into school. I had a “cunning plan” to have Bunny in my handbag for the morning’s skills activities and D interpreted that to mean Bunny was staying there all day. Eventually she went in and then greeted me 20 minutes later – at the start of the activities – like she hadn’t seen me for hours!!

She participated in all the skills activities in the morning.

All the class did brilliantly.

This afternoon was the competitive element, the running races! There is always a fantastic atmosphere at this. Every “house” colour sits together – relatives included – and all try to outdo each other with cheers etc. There were medals and a podium this year too, which made for a very competitive atmosphere. I asked D who we should cheer for and she would answer “who is in the lead” – my fickle daughter!
She came third in her first race – unfortunately there was a shortage of bronze medals so didn’t get a medal, which caused a bolt (in a big field) and a lot of calming down – and second in her next race – silver medal woohoo!

The medal made for a very happy D and a bursting-with-pride Mumma! She was overjoyed.

I think the highlight of the afternoon was seeing a child in the races who was in D’s class two years ago. She has cerebral palsy and is normally in a wheelchair but today she was in a race, supported by a TA on each side, walking. Her smile as she crossed the finishing line was absolutely fantastic.

The wheelchair-using children had a race too, their TAs running along behind them, I think they’ll sleep well tonight!

D’s enthusiasm (and the fact it finished early so she was out of school before the other two schools we pass) kept her going all the way home, together with another “guess the colour of the smarties”.

T was mega proud of his sister’s medal (and a bronze one to come) and he cleared a shelf in her room for her “medal cabinet”, he’s already looked up what the Paralympic medals look like (nothing like planning ahead T!)

Not surprisingly D has settled, tired but happy – with her Melatonin as per.

Butterfly watch – day 27 🌸🐛🌸:
Still no news from the 10 bat-like Freds, just hanging around, doing their thing.

I hope everyone’s had a good day, thanks very much for reading, comments/RTs as ever welcomed Jx 😘

I’m so proud of how she participated today – despite initial anxieties – and even though she bolted over the lack of a bronze medal, she overcame it and got a silver one.

Tuesday 26th June

Another huff-worthy day in parts, I’m afraid.

The school run this morning was Horrible, with a definite capital H. D started off well with her walking but got scared by these two children who always cycle too close to her, so back to the sanctuary of the buggy. We got close to T’s school when she realised that she had dropped one of her toys (no, not Bunny, but a “My Animal Farm” toy cat she likes to carry). T scuttled to his playground and there was no negotiation, it was back to find the toy, she said (ok, shouted) if it wasn’t found then she would call 999, by this time she was angrily stomping off. We got to the main road and she was so angry she got out of my grasp and went out into it – aargh! – fortunately the oncoming vehicle was slow, if it had been going faster it would have been emergency stop time.

Her lack of road sense – despite repeated instruction – really concerns me. There was an autistic woman in a local news programme a few months back who has been hit by cars about 20 times (I think) because she is unable to judge speed and they all seem like a blur to her. Really worrying for the future.

Anyway, the toy was found and so we set off again, accompanied by “I don’t want to walk, tell school to stop making me” and similar shouts. I tried her favourite song on YouTube and a coin but it was a case of one hand on the buggy, the other around D – reassurance for her and for me.

Eventually we got to school, unsurprisingly some reluctance to go into class so her teacher came out, I explained what had happened and D went off, after reassurance.

I headed for a coffee and a muffin (shoot me down) channelling the Scream portrait!😱

D came out at the end of the day looking very tired and very scared of the transport escorts. She was very vocally negative about sports day tomorrow. Moans again about walking until we played a guessing game. She had a pack of smarties as her after-school treat and T and I had to guess what colour she was pulling out next. We got it right a few times, but mostly wrong much to D’s amusement! It kept her distracted and laughing, shouting out the colours, all the way!

Something else that made her laugh was a makeshift puppet show at home:

Performed to the “Manah Manah” song!

Aside from that she’s done solo play with her Lego and playmobil, happily in her own zone.

Butterfly watch – day 26 🐛🌸🐛:
Still no further progress, my ten bat-like little Freds. We have a book that fascinates D as it details the life cycle, here are the caterpillar pages:

Looking it up, the pupas turn a much darker colour the day before the butterflies emerge so at least we’ll know then that it won’t be long.

When our day ends peacefully and she’s settled happily, it’s hard to believe the downsides of the day, but autism is definitely a rollercoaster. Just glad she’s happily zzzz-ing, with her Melatonin aid.

New day tomorrow, very much out-of-routine with sports day activities in the morning and afternoon, I hope she puts her anxieties and negativity around it aside and enjoys it, I’ll be there for both sessions.

Thanks very much for reading and comments/RTs as ever welcomed Jx 😘

Monday 25th June

Huff, huff, huff. Yes that’s me tonight.

The day started off really well. D walked to T’s school, then had a spell in the buggy, then walked into her school. She knew I had to then walk back to T’s school for his sports day so went in very well, bless her. I wish I could have taken her but the unfamiliar surroundings, mixed with the large amount of people, coupled with the fact that she wouldn’t have been allowed time off and that it was T’s “thing” wouldn’t have worked.

T’s sports day went very well, his “house” came third overall and there were no individual races, it was all about team spirit and fair play. Here’s a few pictures:

T is in the red t-shirt & blue shorts.

When it was home time, D came out very well but then realised she’d left her hat in class, she went back in with the TA. She came back out and then her little cat toy was missing so we went back in (again). The corridors were absolutely full of transport escorts, parents and child and she held onto my arm saying “I’m not going to get afraid”, bless her! And she did very well, the relief on her face when the little toy was produced too. It would have been a different story of it hadn’t been there!

So…attempt 3 at setting off and by now the ice-cream van had arrived, it’s normally a Wednesday treat but she had coped so well, I thought she deserved one. Lots of secondary school children around the van so she did a bit of tree-hugging whilst I ordered, and that treat occupied her all the way home! Well done D!

Unfortunately a different story at home. T was tired and he’s getting a cold, squabbles over the trampoline and various other things, one wanted to
use the sand timer, the other ignored it. Early baths for all and a subsequent long-lasting tearful episode for D. She’s calm now but it’s taken a lot to bring her back to happy, calm D.

Obviously I realise squabbles are normal for a brother & sister but when one is that little bit more sensitive, it does take much longer to diffuse.

A new day tomorrow, I guess and I presume more preparation for her sports day on Wednesday (which is morning and afternoon!)

Butterfly watch – day 25 🐛🌸🐛:
They’re still bat-like, hanging around, chilling! Be nice to see some progress soon!

Hope everyone’s had a good day, thanks very much for reading and comments/RTs as ever welcomed Jx

Sunday 24th June

Thanks for all your RTs of my “it’s a matter of taste…” blog. I wasn’t going to name names but I think the majority of you who RTd know who these “comedians” are, taking cheap digs at those who can’t answer back.

On with our day:
Haircuts time for T and D. T’s was with the clippers – bish bash bosh, job done – he stood very still and it was over within a few minutes. D’s was try-and-keep-her-head-still-by-watching-the-TV, just literally a couple of inches trim but the wriggling and the head turning and the bending make for a much longer job. Eventually done!

She’s enjoyed (yep, you guessed it) the “manah manah” song again, countless times and I remembered we had an old “Stephanie” from “Lazytown” wig in the dress-up box so she’s been wearing that, singing along to the “do-do-do-do-doo” of the pink cow/monster muppet’s part.

Not too many squabbles between her and T today, when she hasn’t been monopolising my phone she’s been playing with her playmobil figures, she likes to change the hair on them and carry them around. In nursery, before she was diagnosed, they noted that she liked to carry the “little people” around for security.

I was preparing D for back-to-school tomorrow and (hopefully) sports day on Wednesday, I was asking her who her best friend was in class (she’s in a class of 8, with 4 staff) and her answer was “the adults”, which is sad but I guess predictable.

Butterfly watch – day 24 🐛🌸🐛:
Oh *yawn yawn* still tiny little bat-like cocoons. Hopefully there will be some butterfly emergence by the end of the week.

A good day – little incidences aside – hope everyone has had a good day too. Comments/RTs as ever welcomed, thanks for reading Jx 😘

Tonight’s picture comes via @NiciJT4Autism, it’s so droll, absolutely love it!

It’s a matter of taste…..

There has been a spate of comedians mocking disabled children in the last few months. Easy targets or is it something more?

The red-top tabloids seem determined to name and shame benefit cheats, headlines screaming “lotto winners still claiming £xx benefits” and “off work for xx years with a bad back and filmed running a marathon” and then you have the stories of the families with children in double figures, the stories are written in such a way that it implies the parents are proud to receive £xx from the state.
I can understand how these examples can and do annoy people.

But to mock disabled children? What have they done wrong? Being told that your beautiful child has a life-long disability is heart-breaking – literally – and then you pick yourself up and realise if you don’t help your child and “watch their back” there isn’t a great deal of practical help offered, you have to seek it.

Yes, there is a Disability Living Allowance benefit and a Carers Allowance benefit but this does not begin to cover the fact that weighted items (which help regulate sensory issues), SN buggies (which are vital if your child has severe anxiety issues) and other SN items are very very expensive. Employment is scarce anyway so to find a position which would enable you to only work school hours, take time off repeatedly for medical appointments and include emergency time off for illness and anxieties around schooling etc would be miraculous. Many SN children are schooled at home because either the system cannot incorporate them or anxieties are such that they cannot go into school.

I’m digressing and anyone who mocks disabled children is not going to be interested in the day-to-day existence of parenting a SN child, they are looking for a quick and easy laugh.

Then they go home to their families. Do they feel regret for their words as they look in on their sleeping children? Do they consider that the people who have laughed at their “jokes” now have an opinion based on what they have heard? Yes, talk is cheap but words stick.

No matter if there is an apology for any jokes (and there rarely is) the words are already out there.

There is a saying “walk in my shoes” but I’m not offering that to anyone who mocks SN children, they’d only mock further and I don’t want to swap and live their ignorant lives anyway.

An example from a magazine 9/12/2012, it continues…

Saturday 23rd June

Thanks very much for the RTs of my “Mr Pick” post, T loved seeing himself on screen and smiled away reading it, phew!

No school runs (walks) today….nice,
D has been happy doing her reading and playing with the craft box:

As she has been into the “Manah Manah song” so much this week, I thought I’d try her with one of the Muppets DVDs. No such luck. Because it was new and didn’t immediately start with what she was used to, rejected! It’s not been all bad though, I found a clip-on ponytail, got Hubbie to drape it over his head and sing the song! D loved it and then said “Daddy, take off Mumma’s hair” which was very funny!

It was a nice change for everyone to have the same dinner tonight. Normally what with D’s sensory issues and T’s picky eating, I will end up doing three separate things but we all had fish & chips from the chippie, nom nom. Saved cooking and fitted in with a relaxed Saturday.

Butterfly watch – day 23 🐛🌸🐛:
No change from yesterday’s picture, we could have another 7 days before some little butterflies emerge. The picture of the little bat-like cocoons is on yesterday’s blog.

Tonight’s last picture is something I RTd earlier, if you’d like to share it with your followers for greater autism awareness, I’d be delighted if you did. As you can see from the picture of D, autism is invisible and relies on empathy and understanding as opposed to senses.

Hope everyone’s had a good day, thanks v much for reading and comments/RTs as ever welcomed Jx 😍

Mr Pick

This is our nickname for T, our 9.5 year old “Pickle Jar”, which was his nickname from about 6 months, then shortened to “Mr Pick”.

T is a bundle of football-loving & football team playing, book reading, hard-working pickle-ish-ness.
He can also be incredibly stubborn (hmmmm just like his mum and dad), an
extremely fussy eater and will sometimes wind his sister (D) up without realising it – although it definitely is intentional on occasion.

Ask him a football fact and he will know it, Match magazine arrives every week and is instantly devoured. His homework is done in a flash and throughout this school year (since September) he’s only got one spelling wrong!

We have always tried to be open with him about D’s autism and the ways it can affect her, and our family as a result. When trying to explain autism to T and without being aware that a puzzle piece was the symbol for autism, I likened the brain to being like lots of puzzle pieces and that in D’s case, a few puzzle pieces had overlapped which causes her to react like she does.

We haven’t gone down the siblings support groups route yet, T doesn’t want to and I don’t want to force him. As long as he continues to be open with his feelings and knows that he has us around, I’m happy with that. In time, I think he would find siblings groups useful.

His football team have won a few trophies this season, as well as being pleased for them, I’m so glad that Hubbie & T have this “boys-only” shared interest (Hubbie is assistant manager of T’s team). It gives them both a chance to go off and be lads for a while, not sure who is more pleased at their wins sometimes.

So Mr Pick, love you, we’re so proud of you xx