Tuesday, 25 June 2013

What do you see when you look at me?

When I look at my son
I see perfection.

The smile that lights up his face,
The twinkle in his eyes,
The little gap between his teeth,
And the way he sucks his fingers.

I see his long eyelashes,
And the mop of unruly dark hair
That sticks up in all directions,
No matter how I try to tame it.

I see the blush of his cheeks
Against his pale white skin.
I see his little button nose
And the tiny barely-there freckles.

I am filled with love and joy and pride for this beautiful child that I created.

What do you see though? 
What do you see when you look at my boy?

Do you see the way his eyes never meet mine
And his vacant stares?

Do you see the weakness in his body,
The supports and restraints in his chair
To hold him up right, to make him sit, to keep him safe?

Do you see the feeding tube? 

Do you see the oxygen?

Do you see disability?


Open your eyes and see.
See my boy.

See my son.





I am linking this post into the Mumsnet 'This is my Child' campaign which aims to support the parents of children with additional needs by busting a few unhelpful myths  - and to open up a conversation about how we can all act together to make day-to-day life a bit easier for these families.



Wednesday, 19 June 2013

Starting School

Both my boys will  be starting school in September.  They're not twins - there's 14 months between them ("Irish Twins" - it's called in our family) but Cheeky starts Reception at our local mainstream and Little H will start in the nursery class at our local special school.  Apart from the to-be-expected feelings of anxiety and melancholy of losing both my children to the state education system at once (don't you DARE ask me what I'm going to do with all the spare time - I'm sick of that question already), I'm actually a little excited for them both.  Cheeky is well ready for school, the child was born ready for school, and I expect he will thrive.  Little H is much healthier and has been making good progress in his development so I think he too will gain a lot from the varied experiences he'll get at school.  It has been a strange few weeks though, preparing for that transition.  There have been similarities of course - expensive school uniform for one (although, to be fair H doesn't need to wear one but I think I'd like him to).  However, it's the contrasts between the experiences that have been most striking. 

I chose a school for Cheeky based on the fact it was the closest Roman Catholic school and I'd taught there in the past so knew it well.  We had one visit to the school to look around and then applied through the online form from the local authority. I found out he'd been allocated a place at our preferred school via email in April.  

I rang the council for a list of special schools for Little H when he was just two years old.  Over the coming months I rang them all and asked about the type of children they taught then visited four of the schools most suited to his needs.  He had numerous assessments from local authority professionals (Educational Psychologist, Teacher for the Visually Impaired, Early Years Teacher) and a statement of special educational needs was compiled.  The process took a year. His papers were sent to the school of our choice who agreed they could cater for his complex needs.  I negotiated (with some degree of difficulty as they wanted him full time immediately) that he could start with a part time place and gradually increase it over the year to a full time place for Reception.  

Yesterday I met with the class teacher's at Cheeky's new school.  They provided information about the curriculum - literacy, maths, religious education - and discussed (in rather unnecessary detail, I thought) the school's behaviour policy.  They impressed on us the importance of education, ensuring good punctuality and attendance and the progress our children could be expected to achieve within the year.  We were given an example of the school dinners provided and told to ensure the children's clothes were named and their shoes had velcro on so that they could put them on themselves.

Last week I met with the school nurses at H's school.  We talked about his need for a 1:1 carer to be with him at all times and went through his epilepsy care plan.  The deputy head said (much to my delight) I could pick the days I wanted him to attend based on the lessons I thought he'd get the most from.  I'm planning to send him on the days he has hydrotherapy and time in the interactive-creative room.  There was a chart on the wall detailing the times, rates and volumes of the children's tube feeds.

When asked if we had any questions;
I asked Cheeky's teacher if there were after school clubs and extra curricular activities for the children.
I asked H's which hospital the ambulance took children to in an emergency.


Friday, 7 June 2013

The Sound of Sirens



I had one of those 'moments' today. You know the sort- sick in the pit of your stomach, heart racing,
 catch your breath sort of moment. It was nothing really- an ambulance; sirens blaring, lights flashing, whizzed by as I pulled in to get out of its way. H wasn't with me (it was respite time and I'd taken Cheeky to the park) and as I surreptitiously checked my phone wasn't on silent, I was once again filled with The Fear. The Fear that the sirens were coming for my son.

It's a strange sensation that long wait for an ambulance to arrive. Seconds feel like hours and only the calming repetitive questions from the operator stop you screaming in fear. In all honesty, the first time I rang 999 I think all I did was scream, although at some point I must have stipulated 'ambulance'. I do distinctly remember being told to "calm down" and that she "couldn't understand a word I was saying", but it's hard to remember anything as complicated as your address when your baby is blue and lifeless in your arms. I've since heard (on 'helicopter heroes' or 'casualty' or somewhere) that they can get your address from a GPS signal on your mobile phone if needs be, which makes me feel slightly less shit about my incompetence that first time. It also never occurred to me to do mouth-to-mouth that first time either- which you'd think would be obvious- but screaming and crying and shaking him was my preferred method of dealing with a lifeless child until the first time Mr. M witnessed one (boxing day, I believe) and quickly stepped in with CPR. 'A-ha', I thought, 'that looks a bit more pro-active!' And shortly after resuscitation training commenced! 

I suspect, if you met me now or watched me handle H's seizures (we didn't know that's what they were at first) you'd think me brave or strong or perhaps assume I was medically trained. The truth is I had to become this person, to build this shell- in essence my son's life depended on it, on my ability to stay calm, to give mouth to mouth, to ring an ambulance ... 

But that first time ... God that first time ...

There are so many many many times I've thought my son was dying. So many times I've begged and cried and pleaded with God. There have been the dramatic side-of-the-road-giving-mouth-to-mouth-incidents and the more 'controlled' 20-doctors-and-nurses-around-his-hospital-bed-on-a-'crash-call'-with-a-resus-trolley-and-heart-paddles, to the "shit-he's-stopped-breathing"-in-the-middle-of-dinner-at-your-mate's-house kind of events with H. And there's the times that I've woken in the middle of the night or early in the morning, too scared to check-just in case.

The ambulance today brought me back there. Back there to a place I can't bare to be but fear I'll be in the future. He has been so healthy lately, his seizures controlled (touch wood). 

I never want to see inside an ambulance again.