What a nasty man

Aaaaaaahhhh the joys of a holiday in a caravan. Cheap, cheerful, full of fun, exciting times when you are a six year old. Like you've fallen on hard times when you are a forty-something. 

Alas, that is where we spent five cosy days during the first week of the Easter holidays and we had a brilliant time. All shacked up together in a small plastic cabin and not one argument between us. 

We hired a rather nice adapted static caravan. Excellent ramp straight to the door, not so excellent flushed access from the ramp and over the threshold but better than lifting over several steps. Lots of room inside and a large bathroom with a shower seat.

It was during the evening of day one that Dan first pointed out the height of the sink and cooker or lack of it. Of course, adapted means everything is lower for wheelchair users. 

Beds were a thing of torture but bearable yet it allowed us to have an adventure and spend time together which we haven't been able to do for a while. 

As it turned out Zack was much happier at base camp than going on a tour of beautiful North Wales. 

We visited a few towns, which, whilst quaint in nature seemed to have not moved past 1959. And don't get me started on lack of internet facilities. Day two of my unplanned digital detox had reached fever pitch by my cries of "Why is there no wifi?" By day three I had learnt to accept my holiday life and was a much more relaxed human being. 

Swimming was a daily activity, adventure was a given and falling into a dress rehearsal for a musical was a fortunate event. 

Pottery was painted and a child's gambling habit brought to the forefront by a determined father to win at the Trolls grabber machine even if it left him destitute and penniless. We were never successful and probably twenty quid out of pocket. 

There was a lot of eating. A lot of eating. But most of all, a lot of laughter. 

We encountered back to the dark ages disability discrimination from a lady of a certain age in a tatty old shop. 

This equated to a stand off between her, Dan and Zack. She being of the mind that he was not getting down the corridor of tat and Dan specifically telling her he was and he will and by no means is his son being forced out of a shop. End result, said lady of age going back behind her counter and in a loud voice making the statement, "What a nasty man." 

Ding, dong, round two. Now I'm involved defending the 'nasty man' and trying to explain that it wasn't very nice to not try and make the shop a bit more accessible for people with disabilities. She didn't care, she worked there six days a week she told me. I walked away knowing you can't educate the ignorant.

All that didn't matter when we watched a show that included children who were on holiday, one of which had cerebral palsy like Zack. The staff working in the show (are they entertainers? well you know the type, theatrical, sing a lot) made every effort to include her and she had the most beautiful voice when it came to her line to sing. 

You can't always get equality, but it's there in between the dark, pushing through. 

Disability equality aside, our staycation was a massive lump of joy. These are our good days and our lucky days. And when you have a child like Zack you treasure them even more. 

Farted on with glitter

Zack and his pals (Harry and Cameron) went to The Lowry on Saturday to watch Home. It promised to be a show that incorporated sensory interaction created especially for audiences with PMLD (Profound and Multiple Learning Disabilities). We were not disappointed.

We had an absolute ball. What a fully interactive, immersive, engaging performance from Frozen Light Theatre. You can read all about them on their website, it is clear to me that they have a very good understanding of how to engage with people who have PMLD.

I am still gobsmacked at how good they were, it's the first time I have been to an event that completely and utterly captured what it means to reach out to someone like my son. The performance blended all five senses, we didn't just watch we felt it, we heard it, we could smell it and we could touch it. To Zack that is conversation, that is interaction and that is bringing the world to him. 

The story follows two characters stranded within a desolate world ravaged by sand storms left behind to fend for themselves. It touches upon fear, hope, survival, friendship. I mean if I wanted to deeply explore these themes that's possibly the life span of a special needs parent.

We move through their journey and in a variety of creative mediums we become part of the performance. Within the first two minutes we looked like we had been farted on with glitter by Guy Diamond. Then we got to sniff some rather pleasant smelling clothing items. Lovely.

There were bubbles, more smells, flavoured water sprayed on tongues, some weird contraption that made massive long foam bubbles. Zack loved it all. 

The best part was when they came round and asked each child their name incorporating it into song. Repeating their name over and over again. In fact, can I point out that not only were the cast talented but they also managed to memorise each child's name throughout the time we were there. I mean I can just about remember my name at the best of times. 

And lets not forget the talented chap who played a plethora of instruments. He came round with guitars and saxophones and gongs. Again a massive tick in the box for engagement. 

You see what they set out to achieve is to reach those who don't ordinarily get to see or experience live theatre and they did it and then some. 

To me they are leaders in their field. Massive standing ovation. Loved it.

By the way, Zack's wheelchair still looks like it's gone ten rounds with a gold glitter gun but we don't mind it was totally worth it. 

Wake up theatre world, take note, we need more of this. 

*Special thank you to Yasha and Sarah for letting me steal their photographs.

You ever searched for a foxes tail on ebay?

Yesterday was World Book Day.

World Book Day is officially a thing. I think it became a definite thing a few years back, but now it is a definite thing, rather than just a casual thing.

I know this because supermarkets now stock up on character costumes at least eight weeks prior to the event.

I quite like World Book Day. I like books and I think if it creates more interest in books for children then that's no bad thing.

What is bad is the fact that you now have to add in another costume outfit to your already busy schedule of general costume/craft/baking/Easter frigging bonnet making itinerary throughout the year. 

My two went in as Fantastic Mrs Fox and a blue bear that gives out free hugs (I made that last bit up, but he had received the outfit as a birthday gift and it came in useful). 

That Mrs Fox though! I tried to suggest she went as Veruca Salt, easy costume, golden egg, done. She certainly has the temperament nailed. 

Oh, no. It was Mrs Fox. This equates to one yellow dress, painting on red apples, finding a fox mask and painting that because the one off ebay didn't arrive as it's from pigging China!

Lastly finding a foxes tail. You ever searched for a foxes tail on ebay?  No, neither have I. But this is what you discover when you search foxes tail.......(clicked on the link, because I'm not putting that picture on here!)

Huh.

Yep.

Look if that's what people are into, well, fine. And I'm not usually surprised by things but wow. Okay.

Obviously that was an unsuitable tail so back to my search which finally lead to some fur detachable collar off my coat folded in half and pinned to a belt. Job done. 

So yes, World Book Day, a great idea. A pain in the arse for me. (Sorry I couldn't help that.)

Say that without taking a breath

Say cheeeeeesssse. Zack's been to the dentist. 


We only visit the dentist at Alder Hey now. We used to go to the main dental place in Warrington and they were good but lets be honest, how many kids are they going to see like Zack?


Zack's teeth have never been, normal. But then again, Zack isn't text book is he? He got all his baby teeth except one top one that never appeared, probably couldn't be arsed to make an appearance. We had an X ray done of the missing tooth and it turns out there is an adult one there waiting to hatch.


Is hatch the right term for teeth coming through? 

Anyway, Zack, like most things with him takes his time with teeth. His gums are very thick and swollen. Dentists seem to think that this is due to the epilepsy medicine that he takes whereas the neurologist thinks it's nothing to do with that. I just think his teeth are lazy like him. 

He's lost a few of his baby teeth and grown some quite admirable front teeth. The bottom two seem to be at war with each other, one coming up straight the other twisted.

As you can imagine every six months when we visit the dentist I regurgitate a one minute monologue that goes along these lines.....
"Well, he's lost another two, but I'm worried that there isn't any coming through, and his gums seem really thick. And then there's that twisted one at the bottom, I mean what about the gums, how will the teeth come through. Are this ridges at the bottom normal.....is it normal?"

There say that without taking a breath.

As always the dentist is very patient with me. In fact, he's a really good dentist. He should have his own children's tv show. Like that good looking doctor on CBeebies, the one that tells those weird puppets about tummy bugs.

When I went this time after my outburst, I looked round at Zack to see he had turned to face me and I swear to God the look on his face was one of, Jesus mum, will you relax. 

Turns out I still don't need to worry, everything is as it should be and all quite normal.

NORMAL

We don't get that very often. And when that word is used in a sentence with Zack it kind of throws you a bit. But yes, all the teeth are coming in the right order, he may be slightly behind by a year (but what's new there), all good, all fine.

Off we left, happy that all was good in teeth world. 

We didn't get a sticker though.....we'd like a sticker. Do they still do stickers saying I've been a brave girl?

Thank you Mumsnet

Mumsnet. 

Do you remember that post about the table with the special items? Yeah? Well that's what I think when I hear any mention of this site. (Look it up, I'm not going to explain myself).

I know it's power. The information, the forums, the go-to site for statistics for any given parenting slot on This Morning. Despite, all this I am not an avid visitor. I occasionally dip in when something on social media catches my eye. 

Such as last week a Facebook post popped up about an article in the Guardian featuring Mumsnet and their This Is My Child Campaign. 

I think it's only fair I give them some kudos for doing this campaign. A great awe-inspiring mish-mash of information about parenting a child with special needs. A fantastic resource of other parents, busting myths, offering support, providing guidance.

Christ, if Mumsnet needed a cheer squad right now I'd be with them, spanx on, shaking my pom poms. 

When Zack was born the one thing I felt so strongly was a sense of disconnect from the norm. A feeling of isolation. Who could I talk to? What could I read? Who would listen to me? What the hell am I going to do? 

I found the odd blog about people in similar situations which helped somewhat. Then I found the wonderful people at Special Kids in the UK. Then life happened and we adapted. But I never forgot, nor will I ever forget those very dark first years and I don't want someone else in our situation to feel as alone as I did. 

And here I am eight years later, still harping on, hoping that those kind readers can put up with the moaning. And those readers who want help find some solace or inspiration or some form of oooh that's a good idea. 

So, yes, Mumsnet, today you rock. Well done you. 

And thanks.

Used to run

😒😒😒😒😒😒😒~~~~Moan Alert~~~~😒😒😒😒😒😒😒😠


Half term, what to do, what to do?

Well, it's done now, suggestions aren't needed. Filling endless days of school holidays is very easy for the smaller child but for Zack and his requirements it can be quite difficult.

We are limited on places to go that we haven't already done to death and limited by what's on offer within our local area.

Once upon a time Warrington Council created a brand new, all singing, all dancing facility especially for children with disabilities, The Warrington Play and Sensory Centre.

In fact so delighted where we with a place to go with Zack that we even did a small testimonial for them.

Oh, and they used to run a lovely group called Dolphins in the holidays that myself and some other mummies and daddies of kids with complex needs would go along to.  But re-read that sentence and what stands out? The words 'used to run'.

Because sadly that service got cut and the reason, funding, or lack of it. I had not been back to the sensory centre for a while and this weekend we visited as a family.

I couldn't believe how run down it looked. In the lovely little dark room they used to have projectors for the large film screen and one for the floor. Not there. Broken.

In the sensory light room, they used to have a switch box to activate the bubble lamp. Not there, broken.

To be honest, I would have had a better time taking him to a normal play centre. I asked an assistant why the box wasn't available, she explained it was broken and they had no money to fix it as their funds had been cut by the council.

I paid £7.50 to take two children in for an hour, I understand money is limited but if I am paying to use a place then I expect equipment to be working.

Secondly, I know councils are having budgets slashed and we see flyers to save libraries and other valuable services. But why is it that those in our society, the most vulnerable and the most at need have their programmes cut first?

My son with all his complex needs like his other pals have no access to leisure or social activities.

No, no, wait. 

There is a council bought in service called Playability that is for children with disabilities. 

Great, we can go there. 

No, actually you can't.

You see my son is PEG fed and he isn't allowed to take a one to one support worker in with him. But someone can come in and feed him, then leave him again without a one to one personal assistant, which he needs in order to access the world. This equals, no access to playability.

He no longer can meet his pals at the Dolphin sessions.

And now we will no longer be going to Warrington Play and Sensory Centre because despite us paying to get in it has equipment that is broken which will remain out of order until someone pays to get it fixed.

Warrington Council need to get a handle of a facility that has the potential to be really, really good. Instead they are choosing to let slip a valuable service to families and children with special needs.

What do I want to see? More opportunity for all children with disabilities, places to go for all and services that can accommodate even those with the most complex needs.


Guess I'm dreaming. 

Can only accommodate six wheelchair users

Here's a pop quiz. 

When does a theatre show for people with PMLD (Profound and Multiple Learning Difficulties) not allow people with PMLD to come along? 

When it gets it's promotion and booking system completely and utterly ballsed up, that's when!

I don't get to take Zack to anything special that's suitable just for him and his needs very often. Don't get me wrong, he still joins in with all the family fun and activities but the majority of it isn't very suited to his needs. 

When I saw a little tweet about a show called Home specifically targeted at an audience for people with PMLD I had to get tickets.

The touring theatre company had shows running at the Lowry so myself and a couple of Zack's friends agreed we would go to the Saturday showing in March as I was advised that this had the most seats available to accommodate our numbers.

All booked, all sorted, and three happy mummy's looking forward to taking their children to a special show. 

Four days later I get an email from the Lowry Theatre to contact them as a matter of urgency. It turns out that whoever booked our tickets had over-sold the show and in particular over-sold the seat number to those audience members in wheelchairs.

Oh yes. Despite my statement to the booking lady asking if there is enough room for three wheelchair users and she telling me yes, it turns out each performance can only accommodate six wheelchair uses.

Again......

A show that if you read the advertising blurb states it is specifically for people with PMLD but can only accommodate six wheelchair users at a time.

So lets get this straight our children are now not being allowed to go to a show catering for their needs because of their disabilities. Oh dear Lord.

No, no, no, no, no. Needless to say I strongly stated how disappointed I was and how it was unacceptable and all the rest of it.  Twenty minutes later and another phone call the production company have very kindly managed to accommodate us, adapting the show so that we can come along with our wheelchairs.

Oh, thank you. That's very good of you and we are grateful, miffed off, but grateful.  I'm hoping after all the fuss I caused that Zack doesn't decide it's not for him and kicks off big time during show time.

I'll let you know how it goes.

That cold, hard beginning

Here I am again. Quicker for you as we have been blog absent for almost a year but The Pants turns eight today. 


Eight amazing years of having the divine fortune to have this boy as my son. 

And we are very fortunate. 

Even after eight years have past in the blink of an eye I still remember his birth as though it were yesterday. But that cold, hard beginning has lead to peace and happiness. That's not to say it's always glorious, no, it is very tough and relentless but it is etched with utter pure love. 

And so I am faced again with balloons and presents and cake for a son who is eight. A son who is eight and has never spoken one comprehensible word to me, or ran to me, or held me, or kissed me. But strangely with him I don't need all of that, his eight years represents fight and strength and presence. Look at him and you feel peace. Isn't that what we all need?

Happy Birthday Handsome

The two awards were poles apart

The tale of two very different awards.

Once upon a time there was a little girl with beautiful deep blue eyes and golden hair who loved to dance. 

She practiced once a week until her teacher said you are ready now to take your first exam. The little girl was nervous and unsure but she tried her best. 

And after a long wait she received her results, 87%. A distinction. She was overjoyed.

Meanwhile a little boy with beautiful green brown eyes and a mop of dark curly hair, rocked up home one day on the taxi. 

He had his usual look of disdain on his face, when asked how his day was the look he gave was meh.

And so began the routine of unclipping him from his chair for the little boy could not walk, nor could he talk. 

After he was settled on the settee, his mummy set about checking his school book to see what message was being relayed back to her from his teacher. 

Out of his yellow school book fell a blue and red certificate. His mummy picked up the certificate and grinned, grinning and marching over to her handsome son.

"What's this?" she wafted the card in from of his face. "What's this?" 

The boy looked at her, stuck his tongue forwarded smiled and made his duuuuuggggghhhh sound. As I said earlier in the story, the boy cannot talk so I will translate.

"That? Oh that. Yeah that's just something I got awarded today from school. Just, you know, a headteachers award for good head holding and sitting up."

His mummy looked at him, as proud as she had looked at her daughter. He had done something amazing and it had been recognised. And whilst the two awards were poles apart they both had meaning. Both accomplishments had taken practice, practice and more practice. Perfecting techniques, training, and trying very hard.

What comes naturally to the dancer, what comes naturally to us all. To hold our head, to sit independently, is a daily grind for the boy. But he is getting better and better at it. So yes, his award too is pretty special.

His mummy ruffled his head, kissed him and told him how amazingly brilliant he was. Then a little a head popped up from behind the couch, leaned over to the boy and said:

"I got a distinction in my ballet exam you know. 87%. Whoohooo."

Yes you did little girl. Yes you did. You both deserve a very big whoohoo.

100 little bits to this toy

What to do, what to do. 

Birthdays, they are getting harder. 

What do you get a little boy with cerebral palsy now that he is almost eight years old? It's not like I can pop to the toy shop and pick up the latest must have or a spot of lego. No, it takes a lot of thinking. 

The main toy/present buying requirements fall into several tick boxes 

1. is it noisy

2. does it light up

3. does it vibrate

4. is it something he can put his hands into. 

I don't think these things when buying for Scarlett, I just think are there 100 little bits to this toy that are going to end up all over the floor and stuck in the hoover (that usually equates to nope not buying that). 

Talking of small bits I almost bought both of them that new toy called Bunchems. Looks really good. Little sticky ball things that you can shape into all sorts of creations. Oooooh yes, both kids would like that, Zack especially as it's all feely sensory kind of stuff. 

I thought I was on a winner until I saw this warning.......

Yep. That is the picture of some little child who got a raft of these things stuck in her hair. Given that 1. Scarlett continuously has her long hair flowing free and 2. Zack has the most incredible mop of curly hair on the planet this could only lead to disaster.

I am still tempted though.....actually, no. There are youtube videos of instructions in how to remove these things from hair.

Well, back to the drawing board. So far we have figured Zack likes Star Wars and Iron Man. Cue new Storm Trooper that makes sounds and noises whenever you move him and a Noctobat. I also have plans to purchase a bell ringing set and triangle. See above checklist.....noise.

You see it is hard especially when he can't say mum could I have a new iPhone instead of that crap bat thing you've got me. So I carry on second guessing and believing that what we buy him ticks the sensory boxes and makes the birthday boy happy. Failing all of the above I know a cuddle for about two hours would make him just as happy so who is the fool.

Well hellooooo there

Guess who's back.......



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