The Story of one of our very own Children in Need
It seems like such a long time since I've written for the News Letter...and many times I've said I would write something and never have...I think the last thing I wrote was maybe 2013/2014 and it was the poem I wrote for Jackson, not long after he was diagnosed, so maybe that is the best place to start and to continue...
"On First March Two Thousand and Two
Down from heaven an Angel flew,
And for some strange reason he chose me
To take him home and love for free.
And so I called him Jackson
my precious tiny little boy,
Who's taught me to appreciate the little things
Who's brought me so much joy.
Sometimes I watch him sleeping
and wonder what he dreams,
For my innocent little baby boy
Is not all that he seems.
Someone has given him a label
That has filled my heart with fear.
And said "This is how it's going to be
Love him while he's here."
But loving him is something I cannot help but do,
He's my everything, my world, so precious
I love him through and through.
He's what makes me happy when I am sad
He makes so much good out of something they said bad.
And I can't help but smile, as I watch him sleep
Thank you God for giving me one of your angels to love and keep."
"Now here we are 13 years later,
We've made it to teenage years.
Through days I'd rather not remember
Days filled with endless tears.
When the hospital was more like a second home
Week after week back we'd roam.
We think he's deaf, he doesn't react to noise
Does he ever look for you or reach for his toys?
Does that matter? It will come in time
I don't want to hear negativity for what it is mine.
Yet while staying in the children's ward I'd lie awake
Listening to the noise the machines would make.
And wondering if it ever does get better
Or was the Doctor right, text book to the letter.
So small, so weak, was he every going to grow
Will he talk after 5 they didn't think so.
Will we ever go a year without a hospital stay
And will the bloody seizures ever go away?
He's not having a tube, we've managed till 5
He doesn't need a tube to keep him alive.
But the NG tube was replaced after being in for a year,
And I realised I didn't want the PEG because of my own fear.
December 2007 the PEG was in place
Still on the Growth Hormone his height was a slow race.
But each year his health got a little better
And things slowly started coming together.
He found the strength to sit without flopping
Let go the sofa and slowly started walking
Then came the day he started talking
Which came before meeting some of girls aloud, who he started stalking!
Not that they would know he could even utter a word
He didn't even acknowledge Cheryl what's her name the x-factor bird.
I remember someone saying, back then, yes, a decade ago
Words that never leave me, words that I've never let go.
I remember hearing someone say
'I wouldn't change them for the world, if I had my way'
But I would, and there is no shame in admitting so
This autistic stuff I really wish it was something we could let go.
That little boy they thought could not see
That little boy has better sight than me!
That little boy they thought could not hear
"Hypercusis" is the word & anxiety holds its hand with fear.
Sudden noises, too many people, sensory over load kicks in
New people are invisible, his voice he holds within.
The refusal to walk, too much going on around
Waiting for the panic at the slightest sound.
Fight or flight, is something very real
And how I wish he could explain how it makes him feel.
New situations, new places, they all make him ill
Until you experience the extremities you don't know how hard it is to chill.
And this I'm now learning, is not something new
To older children with WHS it's something the majority go through"
Those with older children may remember, we never managed to stay a whole weekend at the National Conference...we always had to leave early and I always drove home to the hospital door.
Then in 2013 we began working with Pyschologists and up until last year I had never heard of Sensory Processing Disorder. It was so evident to our new psychologist, who seemed to know and understand Jackson before I explained. Little things I couldn't understand. He needs preparation. To know the plan.
In Summer 2014 Jackson started Secondary School. As many of you know, I was very much against Special Needs Schools. His Primary School had a Special Unit, where he would spend most of his days and he would mix with the mainstream for things like art. So the realisation that I was wrong, the High School I wanted to him go to was not suited to his needs, broke my heart. But those I spoke to were right, the Mainstream High School had nothing for him whatsoever. Jackson needed life skills, it didn't matter, and won't ever matter, if he can write his name: all that matters is he is happy. We were directed towards and decided upon the regions only school for children with severe and complex needs, Langlands School: he loves it. They have specialists that go in for therapy and steer the children towards learning what suits their needs and development.
The transition began early in 2014 and staff from Langlands would go into the "Learning Centre" and then Jackson would go with his friend, who was also moving up to Langlands, for visits: by the time August came Jackson was very excited about his new school.
In June 2015 he was assessed on the level of a 2-3 year old. Again I was devastated. (You might have seen a pattern form here) and then I acknowledged that his sister, Jasmine, who was 3 in the January was more advanced and so again I accepted it as
best I could. (You are probably wondering why I found this so hard to accept...but I did...I was told for years I was in denial and for years I said "you're wrong!" And for years he proved them wrong.)
When Jackson was younger there were places he loved, like soft play. But now he is older, he hates it...his favorite place has
expanded and is too big, too many kids. He'd honestly rather sit in a corner and will not move until we go in and get him, unless of course the fire alarm goes off: he is quick to move then! But he tends to cling to whatever family he has around him, and the world around seems invisible. So, as a family, there are few places we can go where the kids play as a family.
Langlands School gives Jackson and all the children so many wonderful opportunities, one of these being a place called Chariots of Fire.
Chariots of Fire is Carriage Driving Centre specialising in driving for disabilities. It is a small, nationally recognised company based near Lockerbie and brings the sport of carriage driving to all, especially youngsters with Special Needs. Amanda Saville and her team just seem to have this way to engage with the children and the ponies. The training centre encourages personal development activities and equine assisted learning and development. Their aim is to create an environment based on encouragement, kindness, laugher and discipline where people can feel confident to take on new challenges.
Jackson would talk about Tiffy a lot, so in the holidays I phoned up Chariots and booked both kids in. I wanted him to continue his routine of going there. I also wanted him to enjoy his school holidays and join in and laugh. At this point I didn't realise how much it costs and was in shock to learn the price, however, Rosemary agreed to give both the kids for the price of one...and when we were there she told me to get in touch with the support group Parent Inclusion Network who, along with Sports Driving Unlimited, could offer free sessions to the kids.
During the time I found the accepting of High School hard, I cried a lot to the PIN group, the co-ordinators who had older children themselves knew exactly what I was talking about and gave us quite a few sessions!!
To see both my kids laugh together and compete against each other is amazing. Jackson helps set up his pony, normally Tiffy, and holds the reins. Don't get me wrong, he loses his attention fairly quickly but the laughter you hear no matter where you watch from. They play games, of picking up a toy and putting it in a bucket which takes a lot of co-ordination.
In September, PIN contacted me and asked me would I be willing to allow Children In Need film Jackson at Chariots as it was them who were funding the sessions. How could I say no?
Prior to filming we had to meet, where we spoke about what it does for the kids...as per usual, I cried. I explained that they could film away, whether Jackson would acknowledge them was a totally different matter. Whether he'd speak to them was, again, a totally different matter.
So, in October, a couple of people from the BBC arrived to meet Jackson and within a few hours he actually acknowledged
them...remember this isn't like a Wolf Hirschhorn Meeting where I can show him photos of everyone before he goes. I'd no photos of Emma and Sarah so this was amazing.
Then on 20th October Emma, Sarah and the film crew arrived at 9-30am. Of course, before any girl wants to go on the national telly she wants to look her best, hair blow dried, make up on. Stuart laughing "no-one cares how you look."
To start with they wanted to film Jackson on his bike. This is a new thing to Jackson and another huge thing is he got his bike two Christmas's ago and, up until the summer, would not even sit on it. But he can and he can pedal. Don't get me wrong, he can't do it and he still gets knee pain and the 3 year old still insists on racing him and winning. But who cares,
as he says "awe well never mind". They wanted to film him at the park...so we walked round with him in his chair as its too far for him to walk and he showed off what he can do on the swings. This is something he learned all by himself, from a very young age. But Jackson loves to swing, to rock and to be spun. He can actually go on the Waltzers three times in a
row, probably more, but three is my limit and tells the guys they are rubbish if they don't spin him enough. If the park is busy he won't go, or he will but he won't do anything, including getting out his chair.
So then they wanted to interview us, by this point the hair was everywhere and I really couldn't have cared. I wanted to be positive about Wolf Hirschhorn Syndrome. I wanted them to say "ignore the doctors, you're kid is amazing". But question after question, it became quite emotional.
Then they left so we could get the kids fed and ready for chariots. I stupidly bought Jackson new hunter wellies. How stupid was I? He couldn't even walk 5 steps in them due to his ankles and took them off because they were too "wibbley wobbley".
To say he loves Chariots is an understatement. From the minute we leave to go he is excited and he turns up at Chariots like he is at home and I do not think that I could ever explain how this makes me feel. At chariots we have a routine. We always go early and that way we can see the horses in the stables, the display sheep, the donkey, the ducks and the pigs.
then Jackson and Jasmine go pick their hats before going to see their ponies. Jackson's favorite is Tiffy. He absolutely loves her and can spot her a mile off. Jasmine's pony for the day was called "Strawbs".
It was the first time I'd ever been with the kids in the paddock. Normally, when I take them they are in the indoor arena but the sun was shining and outside was set up.
I can't explain to anyone how this makes me feel, but I guess if you watch Children In Need the smile on my face says it all. He gets competitive. He knows he can do it. All that anxiety leaves him. It's amazing. He smiles and he laughs. He takes part rather than watches. In Stuarts words "he's away from the troubles of the day, where he doesn't worry about anything. Where he is in his happy place!" Its remarkable.
Afterwards, they interviewed Stuart, now I have to say he is by far the better public speaker but even he had tears in his eyes.
After Chariots we go for a Haggis supper which, for those who know Jacko, will know eating is a major thing. Textures and tastes he's funny with but this is the routine and he loves it. He even copes with the noise of the trains going past at Lockerbie Station, and, happily told them all this is where he got the train from when he went to London: his memory is amazing.
At this precise moment in time I've no idea what Children In Need will show on the TV but I do hope that it brings awareness to Wolf Hirschhorn Syndrome and also to the Trust. Now really, you're probably thinking I've written enough...or maybe I should write more often.
Aside from Jackson, the Family and Children Services from Social Services have been more involved with us since I saw many of you at the National Meeting. Those parents of older children will know what I said, basically I felt abandoned by them and thought his new school was not the 'golden egg, that I had been told it would be. Well, things have improved on both counts.
In the last 3 years since Jasmine was born, Jackson has grown up in so many different ways. (Apart from the height factor: at age 12 Jackson was 128.5cms and at age 13 and a half he was 143cms) We are still on the Growth Hormone and we see 'The Sick Kids in Edinburgh' very 6 months.)
Anyway, in the last 3 years Jackson has become a teenager and is now going for a form of Respite to mix with other children (mainstream kids and non mainstreams). He goes to a place called Lincluden After School (which is also at the weekends: last week they were at the beach) and he also goes out with Quarriers. They go out for dinner and, like always, if he eats he eats if he doesn't he's at least had the life experience of going out for tea without his parents and ordering food. He also goes to Youth Club and last week he spoke to another little boy (who he has watched for a couple of weeks).
This is all positive because, as much as I don't want to think about it, I do need to accept that he is growing up. As he is growing up, he does seem to understand he's "different" and friends who would come visit him have slowly stopped. So Quarriers and "After School"s aim is for Jackson to mix with people, rather than somehow manage to pretend they are invisible... he is also more likely to acknowledge another child with additional needs and lately has not been interested in going to visit his friend Owen, which is a shame because Owen has patience in abundance and has always seen past Jackson's disability and included
You might be glad to know this is where I conclude. I really would like to say a big thank you to Owen.
Earlier this year Owen and some of his friends completed Mini Mudder (Kids version of Tough Mudder) and as part of this Owen raised funds for the Wolf Hirschhorn Trust.