Wednesday, 25 February 2009

Cerebral palsy, death and fostering

Ivan, the son of David Cameron - possibly the UK's next Prime Minister - died this morning.

This sad story reminds me of Ashley.

When a 15 year old Northern Ireland girl finds out that she is pregnant, it is rarely a cause for celebration. When that girl is the oldest of 4 children living with their parents in a small, publicly-owned, terraced house in a run-down housing estate in an area of low incomes and high unemployment, it is even less a joyful occasion. Abortion was not a feasible option for her because, at that time, abortion for any reason, except for the risk that the mother might die if the pregnancy continued, was illegal. Those who could afford to, travelled to England and paid at least £450 (a lot of money then) to an abortion clinic. Although the baby was not wanted, neither this girl nor her family could afford an abortion.

Ashley was born into this family in 1990. He wasn't well, so adoption was out of the question until a full diagnosis of his problems was made, and it was unlikely even after that. In due course Ashley's mother learned that he had cerebral palsy of the spastic quadriplegia type. He was severely disabled.

Ashley's teenage mother was still at school, so could not be a full-time parent. The baby's teenage father was totally uninterested and refused to have anything to do with him. Ashley's grandparents tried to cope, but with 4 other children of their own, found it very difficult. In addition, the already overcrowded house was clearly unsuitable for this unwelcome addition, and there was no suitable alternative public housing available. The local Social Services department, with the unmitigated approval of his mother and her family, sought foster care for Ashley.

My wife (not Marie - I hadn't met her yet) and I were approved foster parents at that time and had had many successful placements. We also had a “handicapped” son (the official term for Colm, then 10 years old), which made us experienced, in the eyes of the Social Services department, in caring for “handicapped” children and babies. Ashley fell into this all-encompassing umbrella term - “handicapped” - and when he was just over 9 months old, he came to stay with us.

When Ashley arrived, he couldn't sit, feed himself – even hold a feeding bottle - or do anything more than a new born baby. He obviously had severe learning difficulties (which Social Services had neglected to mention prior to placing him with us) as well as his physical problems. He was, however, alert and paying attention to what was going on around him. He could eat mashed up ordinary food. He mostly slept through the night, so he only needed 16 hours-a-day care!

Ashley's family had unlimited access to him, but after a couple of visits settled for occasional phone calls to see how he was doing.

As time went on, Ashley could be seen to be progressing. Although he required full-time care, his infrequent smiles and occasional happy vocalisations made everything worthwhile. I don't know if I was fooling myself at that time or not, but it seemed to me that Ashley was forming an attachment to me. I was most certainly becoming attached to him. I would nurse him in my arms almost every evening until my bedtime, which fortunately coincided with Ashley's bedtime. In the mornings, while my wife was getting our 3 children fed and ready for school etc., I was feeding, changing, bathing, nursing Ashley.

He celebrated his 1st birthday with us. He seemed as happy that day as we had ever seen him. At 11 pm, just before going to bed, he sat on our fireside rug, totally unaided, for a few minutes. I cannot express how happy that made us! Real progress!

-Robert! ROBERT!

My wife rushed into our bedroom, screaming in a panic.

-I can't wake Ashley up!”

I rushed into the next room to his cot. He was lying on his back, relaxed. He looked asleep and had good colouring. Nothing much wrong here...

RELAXED?? Ashley was never relaxed. Alarm bells began to ring. I lifted him. He was floppy. He was warm. He wasn't breathing. He was dead. No! He wasn't dead! Not yet! He was too warm to be dead. I placed him on the nearby bed. Ring for an ambulance! I barked to my wife, and I started to give Ashley artificial resuscitation.

I continued with artificial resuscitation for...oh, I don't know how seemed like a very long time, but it was probably only 10-15 minutes. As I forced air into Ashley's tiny lungs, I heard the fluid collecting there gurgle. It was not a pleasant sound. He was getting cooler, paler, more like a tiny cadaver. There was no breathing, no heartbeat. He was, finally, dead.

This scene still brings tears to my eyes. It's doing that now...

The paramedics arrived about 15 minutes afterwards. They confirmed what I already knew. They had to take him to the hospital to have a doctor check him – would I like to accompany them? In my dream-like trance I nodded affirmatively.

In the ambulance, during the 25 minute journey to the hospital, I was interrogated by an unfriendly paramedic. This was not what I was expecting.

-Who found him?

-My wife.

-Did you give him artificial resuscitation?


-Didn't your wife do that when she found him?

-No, she shouted for me.

-Why didn't she do it?

-I don't think she knows what to do.

-Who taught you to do that?

-The Scouts, when I was a boy scout.

-You weren't doing it when we arrived!

-No, Ashley was definitely dead by then.

-How do you know that – you a fuckin' doctor or somethin'? He was still fuckin' warm! You should've waited for us to tell you he was dead. We might have saved him. You should've kept up artificial respiration until we arrived. You might've fuckin' killed him!

There wasn't much scope for pleasant conversation after that...

At the hospital, the doctor was very sympathetic. He gave me all the time I needed and answered all my questions patiently. It was a typical cot death, he told me. No, there wasn't anything more I could have done. He had almost certainly been dead a couple of hours before my wife had found him. It was possible that Ashley had overheated in his cot and due to his physical problems he couldn't move to get cooler. That's why his body would have been warm, even quite a while after he had died.

The police visited next day – a man and a woman. They were apologetic. They had to do this. It was protocol. There was no accusation of anything being made. They just needed details for their records. They were very considerate in their questioning.

Ashley's funeral was arranged by his family and they generously invited my wife and me to attend the church service and interment of his remains. I attended the short, sad service. My wife, who had not become attached to Ashley, didn't want to go. Not many family members attended. The tiny coffin, covered in a cream fabric with silver decoration, was lowered into the ground at the edge of the small church cemetery. At the graveside, Ashley's grandfather spoke to me. I was somewhat apprehensive about this, but prepared for it. Would his family think that my wife and I had been negligent somehow?

It was for the best, you know,” he confided to me. “What quality of life would the poor mite have had? His mum is relieved, now that it's all over. Not that she wasn't sad, too. But she had never bonded properly with him...”

I visited the cemetery on Ashley's 2nd birthday. There was no marking on the grave, no stone, no flowers, nothing. The grave was totally covered in weeds and indistinguishable from the surroundings. A visitor to the cemetery would not have known that there was a grave there.

It was as if Ashley had never lived.


Laura - Are We Nearly There Yet Mummy? said...

Such a sad story.

It must have been very hard to write.

Robert said...

Laura - it brings the emotions to the fore, but it's good to get the story out after all these years.

Madison Rose said...

That's so, so, tragic, poor little Ashley. It sounds like you made his short life better and happier, which was all you could have done.

I have great admiration for foster parents - what a difficult but important job and a huge responsibility.

diver said...

It'd be a completely tragic tale were it not for the glowing compassion demonstrated by you and your wife in your preparedness to foster Ashley. Riveting post Robert. My warmest regards to you for sharing these poignant memories.

Mandy said...

Hi Robert

I am sorry that Ashley had such a short life but in that life you and your, then, wife gave him a loving home, in which he made progress and I am sure felt loved and comfortable.

Thank you for being able to and sharing your love of Ashley here.

I am sad for the Cameron family. I am sad when anyone loses a loved one but it affects me more when it is a child. I think that is the same for alot of humans. A sense of some shared grief. Hope that doesn't sound corny. It isn't meant to. Is not easy for me to talk about the death of a child without sounding a bit futile as I have not lost my daughter and is my worst dread that she dies before me or without living a healthy and full life.


Coffeecup said...

Had he been born in England he would never even had the chance of any life Robert, not under those circumstances. Regardless of whether I agree with the strict law on abortion there (which is ridiculous) the tale of his short life was tragic, but also heartwarming because of the care that you gave to him. It takes a remarkable and compassionate human being to accept and care for another's child I'm sure, and then to have to endure such grief, oh my!

...and that paramedic! What can I say?!

rosiero said...

God, you are a saint to offer your home and care for another's handicapped child when you have your own share of problems. And then to be treated like a criminal for not resuscitating him for longer than you did, is unforgivable. I can imagine how upsetting it must be for you to relive this.

rosiero said...

By the way, I have just read your previous post (I must have missed it) and am chuffed to ribbons that Marie ventured out several times over the weekend. I can imagine your reluctance to put out the red carpet just yet, but I bet inside you feel there might just be a chink of light at the end of the tunnel. Do hope so. Marie looks relatively relaxed in the photos, so hope she enjoyed her outings too.

Anonymous said...

Robert, what a turn of events. I am sure you can understand the comfort Ashley had to feel inside to have you there. The experience with the medical professionals seems horrible and may have done more damage to you and your family than the passing itself.

Robert said...

MRose - It's true that we did all we could for Ashley, but I'm not special for that. I enjoyed fostering and the rewards it brings.

Diver - Thanks for the compliments, deserved or otherwise! It has helped to share this story.

Mandy - I guess Ashley knew that he was cared for. Babies & children don't need words - they read body language. I also fear one of my children dying prematurely - it seems to be unnatural. David Cameron was aware that his son was extremely unlikely to live past early adulthood and would have been prepared for him to have a short life, but I'm sure that this unexpectedly early death will have affected him greatly. MY biggest fear is dying myself before my little ones grow up. Therein lies my health anxiety!

Ccup - The law on abortion in Northern Ireland is, imho, disgusting. It hasn't changed much since Ashley's time and has caused suffering to lots of women and unwanted children. It also discriminates against the poorer in that society since the better off can travel for a termination.

rosiero & ccup - I'm no saint! I enjoyed my short time with Ashley. However, the paramedic...that's a different story!

MTAE - The experience with the paramedic is one I shall never forget, despite the fact that it was so unpleasant. Ashley's death is unforgettable, too, but in a much nicer way.

Robert said...

rosiero - re previous post - Marie had a really enjoyable weekend. I bope that there will be more progress, but I'm not expecting anything in particular - thus avoiding potential disappointment.

Robert said...

rosiero - re previous post - Marie had a really enjoyable weekend. I bope that there will be more progress, but I'm not expecting anything in particular - thus avoiding potential disappointment.

Robert said...

rosiero - re previous post - Marie had a really enjoyable weekend. I bope that there will be more progress, but I'm not expecting anything in particular - thus avoiding potential disappointment.

maz said...

AW (((Robert))) what a good thing for Ashley that he found himself placed with your family.
He didn't have very long in this world but he knew love.

maz x

Robert said...

maz - you are soooo sweet!

Anonymous said...

Its still so vivid Robert and very tragic even for the reader like me. It does make the blood boil the way Ashley's family were quick to sweep his young life under the carpet and did not keep so much as a memorial.

If anything good did come of his short life it is that he found loving foster parents and that is where is memory lives on.

Thanks for sharing what must have been a very hard thing to relive again.


Robert said...

Hi Nechtan - It was actually therapeutic to get this out of my head. It's always been there, niggling me, but I had no-one to tell about it. Blogging can be good for you!

Turf Dad said...

When we saw our youngest for the first time she was at a foster home.
This lady exclusively took "handicapped" children. There were 6 kids in the house at that time. I remember thinking she was a saint.

We fostered an emotionally challenged boy for a little while before we adopted, it was TOUGH.
I'm not sure we could do it again.

Halo said...

Im so sorry to hear this Robert. The death of a child is such a sad sad thing, i cant begin to imagine.

Robert said...

Hi TD - Fostering isn't for everyone, and fostering kids with disabilities tales a certain kind of person. Being a saint isn't required - enjoying the rewards of helping the kids is all it takes.

My son Colm is autistic, as you probably know, and challenging behaviour is par for the course with autistic kids (and adults!). The worst times are normally during adolescence. Dealing with challenging behaviour is enormously tiring, so I'm not surprised that you didn't want a couple of decades of it!

Robert said...

Hi Halo - I totally agree with you - a child's death is sooo sad. Death should only be for old people.

Anonymous said...

Robert I am so touched by that story. You are to be commended for your love & service to that child. It's NOT like he wasn't born. His life (even though very short) had a very BIG impact on you and even on others vicariously. Thank you for showing your love to that baby and the story of his life with us.

Take care of yourselves.

Faith H.

Robert said...

Thanks Faith - In the post, when I said that it was as if he had never been born, I was mostly referring to his family. I felt at the time that they were relieved that he had died. I'm sorry if that sounds somewhat cruel. Ashley is still alive in my head and he will always live there.

Turf Dad said...

"Dealing with challenging behaviour is enormously tiring, so I'm not surprised that you didn't want a couple of decades of it!"
No, we signed up for that. We will be dealing with Bipolar, ADHD, and Reactive Attachment Disorders for the rest of our lives. The oldest has even been diagnosed as a sociopath.