Thursday, 10 July 2014

The Disability Diaries : Growth

When the letter arrived home from school, stating that J1 had an 'Activity Week' approaching, I read it and wondered if it might all be a bit too much for him to cope with.  A whole week of being out of routine.  A whole week of travelling to different venues.  A whole week of extra curricular, over stimulation for his brain.

However, as the week drew closer J1 showed none of his usual 'out of routine' anxiety.  When I mentioned it to him in conversation, which I tried to do every evening whilst I got him ready for bed, he got excited and repeated back what he had heard in class about the activities.  He even started to do his 'excited' clench.
 
However, having 10 years of experience on my side, my own anxieties did not lay to rest as I pessimistically thought 'The meltdown will come at some point.'
 
But... It never did.
 
It never did!
 
I waited for it to start appearing, the constant repetition that 'He doesn't have too.' or the waking in the night crying and saying 'He'll stay home today.'  Like the rain you expect to see after having two days of blazing sunshine on the UK shores in the summer, I waited.
 
Nada.
 
Nowt.
 
Not a peep.
 
He continued to be excited and verbally upbeat.  So we responded in the same way and by the time Monday morning arrived the house was buzzing with talk of 'Activity Week.'
 
The first day I had to drop him to the venue as it was a park closer to our home than the school.  My own anxieties returned, in the past when I have taken him somewhere with the school he would cry for me as I tried to leave.  But this year, when handover came, he was more interested in his friends and what they had brought for lunch and didn't give me a backward glance.  I actually walked away, back to the car to the sounds of 'Byeeeeeee Mummmmmm!'
 
I could have cried.
 
With joy! 
 
Such progress!  Such growth!  I had not seen it coming.
 
Puffed up with pride I looked forward to the following day when I would be, cue dramatic music, staying for the day with the class on the farm trip.
 
I was not to be disappointed and I must say, etch it in stone for it to lay written forever, it was one of the best days of my life.
 
I got to spend the day watching, with my own eyes, just how far J1 has come since January.  He has built real friendships.  Buddies.  School pals.  The other children wanted to hang back with him, hold his hand, chill with him.  Spend time in his company.  They argued over who's turn it was to sit next to him for lunch.  And J1 revelled in it. 
 
As did I.  Gone was the school trip of past whereby if I so much as attempted to smile at another student he would burst into uncontrollable sobbing.  He wore a smile all day, as bright and beautiful as the sun.
 
We always look for achievements for our children.  For J1 this was a huge one.  It was one giant step towards independence.  The only thing I really pray he will achieve, and achieve fully in life.  Despite of his physical disabilities.  To have friends to laugh and joke with.  To have friends to share experiences with.  To get involved. To enjoy life.
 
My boy is growing.

Monday, 7 July 2014

My Writing Space in Pictures

A few people have asked to 'see' my much adored 'writing space' that I masterfully procured back for myself last week.  I think because I said it represents me.  So rather than putting a, probably poorly executed, attempt at a shot of the whole room I thought I would take a few snaps of the things in it, which give a good representation of why it means so much to me.

1. Family Life Tile

My lovely friend ML, used to run a wedding planning business.  During the course of her career she came across many cool wedding things but none more so, in my humble opinion, than this.  All the pieces of our wedding day immortalised into ink to be cherished.




The wonderful people who produce these can be found here : Your Life Tile

2. Antique Typewriter



I don't think this really needs much explanation does it?

3. Print of J1's Feet

Obviously J1 can not stand down to mark his feet for us, so it is always been quite difficult to get good prints and we have tried on many occasions.  But this one came home, quite randomly, from his after school club a few years ago and it took my breath away.  Hence it was swiftly framed and wall mounted.



4. 'To Read' Shelf

Yes, these beautiful articles (i.e books) are all waiting patiently to be the next called upon for my reading pleasure.  The bigger the pile gets the more excited I feel when I look at it.  Which some might think is odd, but to me it makes perfect sense.



Recently I have been on the hunt for books from my childhood and was tickled pink when I found my absolute favourite 'Tilly's House' by Faith Jacques.



5. My Mantra



When I first decided I was going to give this writing thing a 'serious go' I had this made in Wales.  And I think, not a truer word said, to be honest.


6. Bag Collection

I have certain places that are the holy grail of shops.  If ever I am lucky enough, or save enough to visit and actually purchase (instead of looking forlornly into the window, wishing 'If Only') I try and keep the bag as immaculate as possible so I can worship it.  Daily.




7. Barbie

And finally, a room saying 'Me' wouldn't be complete without a Barbie representative.  Past posts have already let out my secret.  I have collectible Barbies (and proud of them!) but sadly most of them remain in storage.  However, for now this is the Barbie Rep.



To some people this may seem sickly and self indulgent. 

You know what?

 I don't care. 

I live in a house of boys, where blue rules and every other word / sound is burp / fart / poo (followed by much hilarious laughter - seriously do they ever get bored of it?) 

So this is my space, my creative abode. 

Maybe one day the front page of my publishing contract will grace the walls and my own books line the shelf.

And maybe dreams will come true?



Wednesday, 2 July 2014

The Plan is Set - This Ship is Ready to Sail

So, I was back from Britmums Live.  I had written the blog post laying down the gauntlet.  I had purchased the A1 paper and colour pens to produced the progress chart for the wall.

I was ready to make this my year. 

To write.

Full of cocky arrogance and hope I opened the door of the 'largely abandoned for the last six months' room in the house.  My office.

Shock consumed my eyes. 

No longer was it the female domain I had left.  Instead the floor was almost entirely covered in other peoples junk

"But!" I wailed "This is my one little piece of space - what happened here?"

What had happened?  I had taken my eye off the ball.  The men in my life had slowly started to etch into forbidden territory.  And I wasn't there to ward them off.

With a fire in my belly I set about righting the wrong.  Framed football shirts and random shite from husbands work were removed.  Cases were returned to their rightful place (the loft).  Toys were evicted and marched back to the toy box.  Dumped paperwork cleared.  Surfaces polished.  And finally after two solid hours, rocking along to 'The Ultimate Running' CD...

Normality was resumed.

Shoulders were unclenched.

The face softened back to it's normal scowl.

The writing plan could commence. 

In all seriousness, my space is important to me and I intend to spend a lot of time within these four walls, doing what I set out to do (see Setting Sail with a Plan) so it needs to be neat, it needs to be tidy and it needs to represent me.  I am so lucky to have this room and I want to do it proud.  I have a 12 month plan (September 2014 - September 2015) with the culmination being the attendance of the York Festival of Writing.  I have a lot of work to do. 
 
I have a wall chart with my monthly targets and space to monitor the actual progress.  It covers a range of basis from blog posts, to word count, to short story competitions.  I am not under any illusion this will start prior to September as it is the Summer Holidays and full time Motherhood ultimately rules all.  If anything gets done it is going to be filed under 'Sheer Bonus'.
 
But at least the space is there waiting for me (as will I be, at the door with a necklace of garlic and waving a crucifix if anything remotely looking like a toy or work junk starts to get too close...)


Tuesday, 1 July 2014

From Baby to Boy

I write a lot about our life in respect of my eldest sons disability.  How it has an effect on us as a family.  How I cope, or more to the point, sometimes don't cope with the curve balls it sends our way.  But I also have another son, a younger son, who is four and perfectly healthy.

He is a very demanding little character, some days too much.  Other days he is so adorable and lovely I wonder - Why he can't be like that all the time? 
 
Don't we all though hey?

I am glad we have reached the age of four.  Both him and I relatively unscathed.  If somewhat a little hoarser from all the required raising of voice to get any acknowledgement that I need him to either bath; get dressed; brush his teeth; tidy his toys up; eat his dinner; not pull everything out of the drawer because the angry birds t-shirt is clearly already laid out on the bed. 
 
Four.
 
It is a big age. 
 
Four.
 
It officially moves him into 'Little Boy' phase of life.

As he rapidly approaches the end of his nursery days I have to admit I am just a very little bit excited that he will be going to school in September.  I am seeing many social media updates from other mums claiming they don't want their little one to head off into the big wide world of school yet.  But for us we are craving a new solid routine.  He is so ready to attend school that when the paperwork arrived on our door mat I had absolutely no hesitation in ticking the 'Yes - he will be attending full time' box, much to one friends horror who clearly doesn't think her child is ready.  Every child is different.  Every parent is different too I suppose.

Together over various shopping trips (trips to the shops are frequent and thus short for us to survive it) we have collected up polo shirts, v-neck jumpers, trousers, new underpants, PE kit, plimsolls (ugly looking things), lunch boxes (although now we have been informed that all children starting school in September 2014 will be entitled to free school meals but I haven't been able to burst his bubble on that one yet).  We scoured the Internet and found a company that could get his unusual name embroidered onto a gym kit bag (Mum of The Year award that one almost got me).  Finally, the one thing I am not looking forward to, a million 'iron in' name tags made.
 
As we wait for September to follow, what should be, a busy but hopefully pretty damn cool summer, we have already started on his adventure.  For him it is probably going to be the biggest, scariest and most exciting thing he has done in his short little life so far.  And I feel so privileged and lucky to be his mum to hold his hand at the start of this new era in his life.
 
We have been to visit the school twice on different afternoons, and he has happily charged around the playground.  We have borrowed reading books.  We have a whole host of other dates that are illuminating his road into education.  We have purchased one or two school logo pieces of uniform ready for school trips or concerts.
 
I am confident that he is going to be just fine in this transition.  I think it will be more telling on me when Thursday and Friday are no longer 'our days'.  Our lazy, TV morning followed by bath and then the playground or a picnic somewhere starts cease.  And although the voice is often raised he is my buddy.  He talks non-stop but he certainly ensures the day is never dull.  He forces me to stop worrying about the house work and encourages me to have a go on that zip wire!
 
So, although I am looking forward to the new times ahead and excited about the opportunities that may come along with change I am going to make damn sure to spend as much time at the park kicking a ball around as possible.  There are a few hundred turns on that zip wire to be had yet.
 
And as I always like to tell him 'He'll always be my baby.'

  


Saturday, 28 June 2014

The Disability Diaries : What I Didn't Want To Hear

You know that song, 'La La La,' that came out last year?  The one with the video where the little boy sticks his fingers in his ears when he doesn't want to listen to the man that is shouting at him anymore?  Sometimes I want to do that.  Stick my fingers in my ears.  Stick my fingers in my ears and not listen to the voice on the other end of the phone that is telling me they believe my son just had a seizure at school. 
 
A seizure.  A prolonged absence to be precise.  A form of epileptic activity.
 
In the graceful words of a dear friend : 'Shit.'
 
The school had mentioned they wondered if he may have been having some form of absence a few weeks back, but not having heard anymore since then I blissfully blocked it out and told myself they were probably just being over sensitive because he is still relatively new to the school.  And, in my defence, it hasn't been something that I have noticed at home.
 
But having said that, time at home is for complete chill and wind down space.  J1 is so tired from his school day, when he comes in his wants his tea, a stretch out with TV time, swiftly followed by lights out.
 
The phone call from the school, telling me this happened whilst he was having his physiotherapy carried out, was followed by a frantic call to J1's father and then straight onto the doctors.  Explaining the situation I felt physically gutted to have to relay that yes, he used to have them, but he hasn't suffered since he was about six. 
 
Why couldn't they just stay away? 
 
The doctor noted that she would make an immediate referral to a Paediatrician who would see him and probably refer him for EEG testing.  I remember the last time he had one of those.  He must have been about two.  For eight years we managed to avoid the need for any further intervention.
 
Gutted.
 
Since then he has been watched like a hawk.  Any lack of blinking observed and determined as 'an absence' or just a lack of blinking.  He has looked at me a few times, studying him intently and actually said in that sulky, teen (even though he is only 10) way
 
 "What?" 
 
Hearing that sends floods of joy through me.  My reply is to go and hug him, as tightly as I can, given you also have to hug whatever piece of equipment is keeping him upright at the time.
 
That is one of the really hard things about the form of J1's disability.  Because he has no trunk control, and I mean none, he always has to have support so it is almost impossible to give him a proper hug.  The equipment is stealing my hugs I always feel.  I try and lay alongside him on the bed and hold him, but he can't reciprocate and it is tough when he can't move to allow you to get your arm right under him.  It is now impossible for me to try and hold him up with just one arm, he has grown too much, too quickly.  I didn't realise how soon easy hug time with my son could be taken away.
 
Because of this I find myself being a little over zealous with hug opportunities with J2, but he is still so young he doesn't mind.  I wonder what I will do when the day will inevitably arrives where he pulls away.  Cue fingers in ears.  With eyes closed too.
 
So, after having just one day of feeling upbeat because things seemed to be coming together, this now raises its ugly head.  I once again am waiting at the mercy of the professionals to try and work out what is going on in that beautiful little head of his.  I asked him the other day, whilst he slept so peacefully.  I didn't get an answer.
 
I just hope they do.