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Deborah Orbell, whose son Craig had spastic quadraplegic cerebral palsy, says keeping positive can make the world of difference to how you cope with a situation.
It was touch and go for a while
Craig had a very difficult delivery. He suffered oxygen starvation at birth and emptied his bowels, swallowing quite a lot of meconium before his delivery. I was in labour for 16 hours and then he was born by emergency C-section due to heart decelerations. He was resuscitated twice immediately after his birth and was ventilated for three days. He had to be sedated due to seizures. We were transferred to Brighton, as our local hospital did not feel able to cope with his immediate needs for care. It was touch and go for a while and he was only given a 20% chance of survival.
During a brain scan it was discovered that he had a lot of swelling, due to the oxygen starvation causing a brain haemorrhage. The doctors were unable to give a diagnosis at this time because we had to wait for the swelling to subside in order to see how extensive his damage would be.
We had to squeeze milk into him!
Craig was in special care for a total of four weeks, most of which was because, after waking from the sedation, he couldn’t feed as he had lost his suckling reflex. Even after returning home, he never really learned to use a bottle properly and we had to squeeze the milk into him!
He was actually diagnosed with cerebral palsy at the age of six months. At the same time, we were told that he was blind. He was not diagnosed as being epileptic until much later, around the time that he turned three. As soon as we had the diagnosis, he was referred to many specialists. He had weekly physio visits and we were given exercises to carry out at home on a daily basis. He also saw the speech therapist who tried to advise us on feeding, but he still couldn’t get the hang of it. We had a portage visitor weekly until he was three, which we found quite helpful as she advised us on accessing special toys to try to help stimulate his vision.
Craig had a gastrostomy fitted last year as he was struggling to take in enough nutrition to keep him growing. He is now fed solely through his tube, as feeding him orally began to give him constant chest infections through his aspirating the food into his lungs. This is because he has developed a severe spinal deformity, caused by the muscles on his left side pulling him further and further over. He is going into Guy’s Hospital next week to have corrective surgery and we are all hoping that, following this, he will be able to have some food orally again.
Understanding him has become second nature
Craig’s muscles are extremely stiff which has always made dressing and changing him a difficult task. He is now on daily medication to help relax him and, although it has helped to a small degree, I wouldn’t say it has made a huge difference. As he has got older, these things have become slightly easier as he has learned to control the spasticity himself.
He has never learned to walk or talk, he cannot sit unaided and finds it impossible to communicate his needs to anyone who doesn’t know him well enough to understand the difference in his cries or noises. It has become second nature to our family and we almost intuitively know what is wrong with him, eg needing a nappy change, feeling hungry or uncomfortable.
His personality has started to come through
The whole family has had to adjust to having Craig in our lives. I think we were lucky in that as he was our first. Once his sister Hayley was born, she didn’t know him as anything different. She never questioned why Craig couldn’t do things and, from a very early age, was aware of giving him his personal space and not crowding him, as children who don’t know him are prone to do.
We have tried many alternative therapies with Craig. We attended a Scope school for parents (conductive education similar to Peto) until he was five. This meant a three-hour trip every week but we found it very helpful. They expected more from Craig than we thought he was capable of but we ended up being very surprised by how their methods worked. It really helped us to view him more as a young child rather than a baby. He thrived there
and his personality really started to come through.
Craig copes very well with his condition now but when he was younger it was a different story. He screamed almost constantly for the first year of his life, which was put down to his traumatic birth but, in all honesty, knowing there was a reason for it, didn’t make it any easier! He didn’t sleep through the night until he was 3.5 years old which was exhausting for all of us.
His outlook on life has changed
Craig is still registered as blind but now has partial vision and loves shiny, noisy toys. He likes to watch television and really enjoys seeing other children playing. He adores his trampoline and his sister loves bouncing him on it. He also enjoys his swing and loves being in the swimming pool.
Since he has been attending our local special needs school, he has grown up a lot in his ways. I think once he realised he wasn’t the only one in this situation it just seemed to change his outlook on life. The screaming
stopped, he now lets us go shopping with him and doesn’t start shouting as soon as we walk into a shop. He has learned to be patient when we are doing things around the house and no longer cries if he has to be in a room on his own. Generally he is a very happy, smiley young boy who enjoys the company of others.
Tips for coping
I can’t stress enough how important it is for parents to not to compare their child to others around you. It’s really hard not to but, in the long run, you are not only being unfair on yourself but also on your child.
Always accept help when it is offered; just ten minutes away can make all the difference during a stressful day.
People stare! It’s human nature to look at someone who is different to you. When children do it, I have always explained to them that Craig is no different to them inside, just because he can’t walk or talk, doesn’t mean he can’t understand what they are saying.
Take each day as it comes. All children provide challenges on a daily basis, whether they have special needs or not.
Always try to celebrate your child’s milestones. Yes, they will be different to those set out in all the books but that doesn’t make them any less fulfilling as a parent. Craig smiled for the first time when he was a year old and this was the first time I really looked at him and thought, ‘yes, we’re doing something right’!
Last of all, always try to stay calm and positive, even in the most difficult of times. Keeping a positive attitude can make all the difference to how you handle a situation. Worrying over things you cannot change is a waste of energy!
To a special child
Sadly, on 26th October, three days after his 11th birthday, Craig passed away suddenly after a severe epileptic attack. Our thoughts are with Craig’s family and we are glad to have been able to feature such a brave and marvellous boy on babyworld. Deborah has asked us to publish the following poem as it was read at his funeral and always gave the family inspiration.
To a special child
A meeting was held quite far from Earth
‘It’s time again for another birth’
Said the angels to the Lord above
‘This special child will need lots of love.
His progress may seem very slow,
accomplishments he may not show,
and he’ll require extra care
from the folks he’ll meet down there.
He may not run, or laugh or play,
his thoughts may seem so far away.
In many ways he won’t adapt,
and he’ll be known as handicapped.
So let’s be careful where he’s sent,
we want his life to be content.
Please Lord, find the parents who
will do this special job for you.
They will not realise straight away
the leading role they’re asked to play,
but with this child sent from above
comes stronger faith and richer love
and soon they’ll know the privilege given
in caring for this gift from Heaven.
Their precious boy so meek and mild,
is Heaven’s very special child.
