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.