Life has been so busy and in many ways wonderful, I am constantly asked when
will you update Daniel's original website. I would like to take this opportunity
to apologise for the almost 7 year delay and I promise it will not take so long
next time.
Schooling:
After initially searching around our area we identified several schools that
we thought would help aid in Daniel's development both Educationally and physically
but the school that really stood out was Mere Oaks. This was an amazing place,
the staff were fully committed people and everything was on the same site from,
Physiotherapy, Speech Therapy, nurses and a full curriculum.
Daniel was aged 2 when he started part time, in November 2000 and the staff
in the Nursery really helped to introduce him to the rest of the class. Unfortunately
for a great deal of the initial term all he would do was lie still and not really
respond that much.
Slowly the staff coaxed him and Daniel became a fully integrated member of his
class. The children all had different disabilities but there was a bond between
them. I would however say that Daniel was the most severely disabled physically
and mentally.
In 2001 I became a Governor at the school and remained so until its closure. Unfortunately this award winning school closed in July 2006 due to government cutbacks under the guise of integration. We fought for 3 years in vain to keep the school open.
We presented a petition to 10 Downing Street. Which asked for the Government
not to close the school, which consisted of over 25,000 signatures from the
people of Wigan. We were almost responsible for turning a Labour majority local
council into a coalition council but narrowly lost by 2 votes.
The Save Mere Oaks Campaign appeared on T.V, Radio and National Press and we
arranged several high profile marches raising the plight of our children, we
even took it to the high court but unfortunately we lost this long fight and
with it this fantastic place for special needs children and the break up of
their staff. How do you explain to the children what is going on? It was heart
breaking.
Hope School
Daniel started Hope School in September 2006 and took to it straight away. All
the worrying of the last 3 years disappeared. The Teachers and assistants are
fantastic and bend over backwards to help. We miss Mere Oaks and it will always
have a special place in our hearts. I think we have been very lucky with this
new school and a great weight has been lifted, as Daniel is very happy and settled.
Unfortunately this cannot be said for a percentage of other children that have
moved to new schools.
Nebraska USA 2000
As part of our own research for further information about Daniel's condition
we attended the 9p- annual conference at Omaha, Nebraska USA in June 2000.
Our close friend Annette Connah arranged a sponsored bike ride from Wigan to
Southport, many people took part and the money raised went a long way to covering
Daniel's costs. Coupled with this Ian Marshall from the local Royal Mail sorting
office ran the London Marathon. The story was picked up in the Daily Mirror,
national press and several donations were forthcoming.
Unfortunately during the flight Daniel began to get into breathing difficulties
and I had to resuscitate him using mouth to mouth, I managed to clear the blockage
and got him breathing again. Not the first time this had happened but certainly
the scariest.
The children that attended the conference in Nebraska have approximately 50%
of Daniel's condition but we felt it was an excellent opportunity to learn more
about the condition and meet other parents. Dr Carol Crowe also attended the
conference. Dr Crowe has been researching the 9th chromosome for many years.
She examined Daniel and was able to tell us that although Daniel was different
as he has an addition to chromosome 9 as well as a deletion. There were certain
attributes he would have such as:
· Low muscle tone
· Growth deficiencies
· Learning defficulties
As to what extent, she was unable to tell us. Scoliosis (curvature of the spine)
was also an area to watch for.
We came away feeling we were not alone and looking at the children that attended
realised there was some hope. I remember feeling very emotional when we first
entered the room full of children and that they had similar characteristics
yet they were unrelated by blood and from all four corners of the world.
We also experienced our first Tornado in Omaha and had to take cover in the
basement of a shopping mall whilst it blew its self out.
Georgia, Alabama USA May 2001
We followed up Omaha by attending the following years conference in Alabama.
A local charity volunteered to help us with fund raising by once again cycling
to Southport.
In Alabama it was lovely to see our friends again but this time we noticed Daniel
was far and away more delayed in all aspects. All these children were walking
and talking and in most cases and their muscle tone was much better, about 90%.
Diary of operations:
Daniel has had to have several operations:
· September 1998 he underwent a hernia operation.
· Video Fluoroscopy January 1999, this was to ascertain how his swallowing
mechanisms were working.
· Grommets in Left ear removed March 1999.
· Lyrigo Malacia April 1999 (trimming of the epiglottic fold) due to
low muscle tone the flap between the air ways and the digestive tract was weak
and would flop, hence covering the airways and causing many apnoea attacks (stops
breathing)
· Lyrigo Malacia June 1999, Re-trim of the epiglottic fold.
· Lyrigo Malacia Aug 1999, Re-trim of the epiglottic fold.
· Tonsils removed Feb 2000.
· Inter-cranial pressure monitor inserted into the skull overnight to
test internal pressure, August 2000.
· Cranial Facial operation to open the frontal sutures of the skull,
September 2000.
· Gastrostomy, to aid in feeding March 2001
· Groin operation March 2001.
· 10 teeth removed due to massive overcrowding July 2003.
· A succession of chest & brain scans over the ensuing years up to
2005 but fortunately no medical interventions until 2006.
· O.G.D 2006 Oesphagus-Gastric-Disassociation. Detachment of the oesophagus
from the stomach and attaching to lower bowel. Due to severe reflux.
· Exploratory operation oesophagus May 2007, as Daniel had swallowed
a plastic object that had blocked his oesophagus.
Areas of concern
In late 2005 and early 2006 we noticed Daniel's oral feeding was beginning to
decline. As each month went by his intake became less and less, which in turn
meant his gastrostomy volumes would need to increase to counter balance the
oral decrease. Worried by this we met with Dr Downes and Dr Agbenu. Daniel was
not putting on weight, he was producing a lot of mucus orally, which was also
being vomited, as well as a high degree of reflux (gastric acids travelling
up the oesophagus from the stomach. His bloods were low on iron.
The Doctors prescribed dom-peridome, which moves foods through the body quicker
and has less opportunity to be vomited hence giving it a chance to be digested
and turned into calories and ultimately weight gain. Daniel was also prescribed
omepriezole which is an anti reflux agent which would help to stop the acids
climbing up his oesophagus and damaging it.
In July 2006 we were in Corfu when Daniel started to choke and produce large
amounts of mucus, so thick was the mucus that it was blocking his airways. Suctioning
helped remove the mucus but we knew there was still a massive problem.
On our return we met with Dr Downes and Agbenu who referred us to Daniel's ENT
Consultant Dave Willets. After checking him over he said the problem was not
in the throat but possibly the stomach. We were referred to Adrian Bianchi,
who had fitted Daniel's gastrostomy.
After an endoscopy, (camera down his throat whilst anaesthetised) Adrian noticed
the walls of the oesophagus were very narrow. This was being caused by the reflux
acid, which was climbing up the oesophagus and burning the sides of it.
The effects being swelling, narrowing of the walls and at times blockage and
choking.
On Boxing Day 2006 Daniel was admitted to Pendelbury, Manchester Children's
hospital for an (O.G.D) oesophageal gastric disassociation.
This was performed by Adrian Bianchi on the 27th December.
The operation was a success and as you can imagine Christmas and New Year were
muted but it was worth it.
Paediatrician.
Daniel regularly sees his paediatricians Dr Agbenu & Dr Downes every 6 months,
if we have any questions or concerns they are always available. As well as Doctor
Downes we have the support of the 'Complex Needs Team' who we are in constant
contact with during the day via our mobiles, they are fantastic and even if
Daniel is off school because of illness they will ring up to see how he is.
Dr Downes recently identified the onset of scoliosis in November 2005 via x-ray
this is being monitored closely.
Speech Therapy/Dietician.
Over the years we have worked with a succession of Dieticians, part of Daniel's
condition is that he does not gain weight very well even though he has a gastrostomy.
Daniel's current weight is 23kg age 8.5 years.
We agreed at a very early stage with Lynne John, Daniel's Speech Therapist that
it was essential that though he was fitted with a gastrostomy he should still
feed normally if at all possible. Between Heidi and Lynne they tried a succession
of different textures and tastes. Pureed foods seem to be best. Daniel loves
most sweet thing such as chocolate buttons and this came in handy when we were
weaning him onto savoury foods. We would introduce the sweet and gradually put
on more savouries. In the last 12 months though he has wanted to eat less and
less. He seems to tolerate a rusk or cereal most mornings, will drink orange
or milk shake but we have had to keep a record from school as he is not eating
a great deal during the day. On average 6 teaspoons of savoury and 8 of sweet.
This is topped up with tube feeds in order to maintain his calorific weight
and strength.
Daniel's staple diet, which is fed through the gastrostomy, is Paediasure Plus
with fibre, which is very high in calories and this helps him to gain the essential
weight and vitamins he needs. Daniel's weight as of writing this is 23kg and
120cm in length. His formula is supplied via prescription from Abbott Laboratories,
Abbott Nutrition, Queensborough, Kent, ME11 5EL and is delivered monthly by
courier.
Daniel is tube fed at school at 10 am, 12 noon and 2 pm. (the 12 noon tube feed
is only used if he has not taken enough food orally) He is then fed by Linda
his Carer, orally at 4.30pm when he arrives home from school and then bathed.
At 6pm Linda leaves and we take over Daniel's cares which include quality time
playing and talking with Daniel, a 6.30pm tube feed and at 7.30 pm Daniel goes
off to bed. What is of massive importance to Daniel is his routine. One step
away from this routine and he is unsettled. He also only likes to listen to
the same music each night, which is 'Celtic Themes'. We have had to make several
copies of this cd just in case we lose or break the original, woe be tide if
he does not listen to it before he goes to sleep.
Linda, Daniel's Carer, our friend and newest member of the family.
Linda has become an essential part of the team and family over the last 4 years.
Prior to becoming Daniel's Carer she was his escort to school. Her sunny disposition,
sense of humour, flexibility and willingness to take on anything make her invaluable
and of the many things that have happened since we have had Daniel then meeting
Linda has been the best.
Linda has become a Grandmother since being with us and brought up her own disabled
child so is well aware of the level of attention Daniel needs. Daniel &
Jordan meanwhile love Linda to bits. She has also helped raise funds for Daniel's
Dolphin Therapy (see Dolphin Therapy story later on) 1 night a week Linda stays
over in order to give Heidi & I a rest as his sleep patterns are not regular
and you can be up between 4-6 times a night especially if he is having breathing
issues or sickness. Linda has her own room and we pass over the intercom to
her on these nights. Though she is always able to deal with anything that comes
up we are on hand just in case. I would say though that Linda is as qualified
and experienced as we are when dealing with Daniel's needs and we trust her
implicitly.
During Daniel's school day he receives a great deal of one to one in the class
room, as he is virtually non communicative this helps and we have found he responds
better in this environment, the school and staff have always been very receptive
to our suggestions and we are very grateful for this.
Daniel also receives a lot of sensory therapy with lights, music and textures,
which help him to explore and relax.
Physiotherapy is an important part of Daniel's school day, the Physio's work
on his muscle tone and from just lying still at the age of 2 Daniel is able
to navigate obstacles in any room by rolling, he is unable to crawl due to the
very low muscle tone in his forearms, even though these have been worked on
extensively over the years they are still weak. We use a standing frame at school
and at home which aid in strengthening his legs and posture and though improved
he is still unable to stand unaided. We also use a walking frame but very little
success has been gained from this over the years. Daniel's has special seating
that supports his sides and has a 3-point harness. Its incredible how low muscle
tone can affect a person so much.
As he grows we have had to make some major adaptations to the house in the form
of a large extension, adding over 50% of our house in size. We now have a separate
purpose built bedroom and bathroom for Daniel along with Hoist for lifting him,
special toileting and bathing facilities. As he has no fear, beds have been
a major problem as Daniel will roll out of them, we tried a bed bar but as he
grew he was able to climb over it, we have just purchased a large cot that had
hydraulics which enable him to be raised and profiled this aids in lifting him.
Instead of bending to lift him the bed can be raised, this also works with the
bath that can be raised and the side folds down to enable easy extraction from
it. All of this has cost thousands but we feel it is well worth it as it helps
us all. Our house is fully wheelchair accessible as the garage door is electronic
and the floor of the garage has been raised to the same level as the house for
smooth transition form the garage to the kitchen. From the kitchen you are able
to access all rooms downstairs. We have large patio doors from the kitchen that
lead out to the garden, which is sloped via paving to a raised 2nd patio and
lawn.
At home he knows where everything is and will go to his toy box via rolling
and select toys to play with. Daniel is a very happy child, always smiling but
if he is unsure of anything he will grind his teeth. He loves to be held and
kissed and cuddled but does not understand the concept of gentleness most of
the time as he will grab at ear rings and necklaces as he is attracted to the
colour. Many things go into Daniel's mouth as he still explores by mouthing
and has recently decided he likes to bite things. This is not meant as an aggressive
gesture as I have said before he has no concept of inflicting pain on others.
Another example of Daniel's habits would be his head throwing. He will suddenly
without warning throw his head back and if you are holding him his head will
hit you in the face which can be very painful.
It's not what you know but who!
We are very lucky. One of our closest friends Neil, is a pharmacist, he is married
to Christine, who is a Nurse.
Another of our closest friends Annette, is a registered childminder who now
specialises in looking after disabled children and she is married to Wayne,
a computer programmer hence this web site
Dolphin Therapy Florida Keys USA 2005
In June 2005 we visited Florida, we went to Disney but the main reason for visiting
Florida was to travel down to the Keys. It was a 5-hour drive from Orlando and
we stayed in Key Largo. The Dolphin Therapy centre is based there.
After a great deal of research including phone calls, emails and the Tamizin
Outhwaite documentary on children working with dolphins to aid in communication
we decided to try it out. Some good friends from Daniel's school had visited
the centre and they also gave it the thumbs up.
The cost can be prohibitive so we set about trying to raise additional funds.
· Linda organised a sponsored walk and raffle, which raised a
lot of money.
· Colette, a very close friend of ours and her friends Tracy and
Derek were sponsored by many people to run the Great North run , which in turn
raised a considerable amount of money.
· The Plough & Harrow in Shevington did a sponsored bike
ride and raised a lot of money.
All in all we were very lucky and we managed to cover Daniel's flights accommodation
and the cost of the therapy. Linda travelled with us to help us with Daniel's
care and to give Heidi and myself some time together.
Heidi, Jordan , Linda and I paid our own way.
I must admit I was sceptical, what could a dolphin do that we had not tried
over the years but I was intrigued. It's a 5-day course and starts with the
introduction of the tutor Kathy, and her staff to Daniel and us.
Daniel was asked to paint a wooden dolphin, in order to do so he has to choose
the colours and with the help of the staff actually paint it himself. Kathy
explained he was to nod his head for yes and shake his head for no. Once they
had worked on Daniel's dolphin his reward would be to swim with a real one.
The Teacher was very concise about what she wanted from him. I sat back and
watched really doubting but saying nothing. Within minutes Daniel was nodding
and shaking his head when choosing colours, I couldn't believe it, I was the
biggest sceptic but here he was working with the teacher and laughing. Why Daniel
chose to start to communicate that day we will never know. Prior to our visit
the Dolphin Therapy centre had asked us to complete an extensive questionnaire
and send video footage of Daniel for them to access his abilities. It seemed
to work by a process of recognition and reward but whatever it worked.
In the pool Daniel was introduced to Squirt the dolphin and he was given a choice
of things he could ask Squirt to do, he had to communicate by nodding or shaking
his head. For the first time Daniel was in control. The teacher, Squirt &
Daniel were working together. I am sure if you are reading this you will be
asking yourself how could this happen, I am still asking myself today.
Daniel was encouraged to continue the nodding and shaking throughout our stay
in the Keys, at one point Kathy asked if Jordan could go into the water with
Squirt. Daniel shook his head meaning no, then burst out laughing, my god a
sense of humour, it was amazing. We all laughed and I must admit I had to choke
back the tears.
On his return from the Keys to the U.K we have continued with this programme
and communicated this with his own teachers, his teachers were amazed at the
response and say he is a different child at school.
We continue to this day with this method, there are days when he is not so forthcoming
as with any child and you need to be aware of the response times as it can take
30 seconds to a minute for an answer but it is definitely there.
The people that work there are amazing. We plan to go back again in 2007.
Charity and some people !
Unfortunately I feel I have to put this into the content of this web site because
of the world we live in. In fact I have been paranoid about this from the very
beginning of fund raising for Daniel.
We are happy to accept any help with Daniel but feel strongly that we should
not benefit directly or personally from money raised for Daniel's trust fund.
Therefore any monies raised are paid into the trust fund account or paid directly
to the companies that are supplying specialist equipment or services.
It is a funny world in which we live in and you need to protect yourself from
people who would gossip and are less than Charitable in their thoughts and deeds.
It is a difficult position to be in at times, an example of this would be:
If I have a new company car delivered as a part of my job. To the untrained
eye a normal car but actually specially adapted at great cost to ourselves,
to carry Daniel and his equipment. I pay tax on this like anyone else. The gossips
might say, "they want to raise money for their child but they are driving
around in a new car".
As we both work and we manage to save enough money to buy a much needed second
car, once again adapted for Daniel's needs and big enough to carry a wheelchair
and giving us the ability to go to Daniel at the drop of a hat should he be
at school ill etc: as I work some distance away at times.
Of course the gossips would have a field day, " a second car now".
Sometimes you have to be thick skinned as I have learned, perception is not
reality and cowards only whisper and gossip.
Why would they do this? Is this envy and if so what are they envious of, the
car or the disability of my child?
You can still be successful in life and yet have a disabled child.
You can still be happy and laugh, and you are still entitled to have a life
yourself.
Our aim is to secure the long-term future for Daniel and we see it as our duty
as his parents.
Daniel is 9 and we are 45, in 20 years time we may not be physically able to
look after him and may have to buy in additional help and therefore we need
to work towards securing his future via our own investments. We need to have
that peace of mind should anything happen to us.
Summary:
Over the last few years there has been a slow realisation of Daniel's condition.
As there is no record of anyone having his condition there was no concrete knowledge
of what to expect.
Daniel is a very happy child.
He continues to grow and become heavier which in its self causes additional
problems but all in all life is good.
People say, "I don't know how you cope, I don't know if I could do it".
This always amazes me as he is our child and we love him, for Daniel to not
be with us would make us all unhappy. As for "I don't know if I could do
it" what is the option?
We are no saints or special chosen people and I am often embarrassed by the
implication, we just love our children unconditionally whatever way they are.
Isn't that what being a parent is all about?
I consider myself to be a very lucky guy, great wife, great kids, great friends,
and great life. I believe I am a better person for being Jordan and Daniel's
Dad. So for those people who feel sorry I would say, yes its sad that Daniel
is not like us, running around, walking talking etc, but at the end of the day
if you could go through life laughing and smiling without a worry in the world
and surrounded by love, is that such a bad place to be?
