Our beautiful little boy turned 5 back in October and I thought it would be an appropriate time to document his progress to date.  Many people following Harrison’s development and who have kindly donated to his Trust Fund often ask how he is progressing too so I hope it makes for an interesting read. I also think it will help me and my family realise how far we’ve all come since the tough times when Harrison was a baby.

Slowly but surely the shock and sadness we felt when Harrison was first diagnosed has subsided and we have learned to cope and understand his disabilities, taking each day as it comes.  We’ve watched him grow and learn at his own rate, celebrating each and every one of his achievements.  Of course we still feel extreme sadness that our precious little boy has such fundamental physical and learning problems, which will never go away.  Not a day goes by when I wonder what Harrison’s life, and indeed our lives, would have been like without his special needs but one thing I do know is that everyone is unique we all have our faults and blemishes and Harrison has an amazing personality, understands so much of what we say around him, he’s beautiful and we are so proud of him.

That said it’s not been without many tears along the way, mostly from Harrison still daily, but in our eyes Harrison's’ development over the last year or so has been incredible. With his improving communication, more acceptance of his own situation and just his overall general improvement, as well as Jon and I actually getting a bit more sleep than we used to do (although we’re still up once or twice every night), we’ve all come a long way.

Consultant Appointments

Harrison continues to have regular reviews with various consultants, including Dr Howard (Poole Hospital) and Dr Monsell (Bristol Hospital).  Dr Howard sees him every 6 months at school and she also talks with his therapists who update her on his general health and physical development.  I always attend these meetings to discuss how Harrison is doing and whether we have any concerns at home that we’d like to address.  For some time now Harrison’s general health has been very good, he no longer has medication for reflux and he only suffers now and again with colds etc.  One of Harrison’s main problems though are his spasms. Harrison's’ form of cerebral palsy mean his limbs constantly spasm so he can go from being very floppy through to very stiff continuously which affects his co-ordination and control to do anything physically.  It also means he is often very uncomfortable and frustrated.  His hips are a major concern as his spasms cause him to scissor his legs which over time can lead to hip dysplasia.  When this happens children like Harrison often face a nasty hip operation to imbed their hips to a normal position, with months of rehabilitation to follow!  We obviously want to delay this operation for a long as possible. 

To help the extreme stiffness that he experiences Harrison has been prescribed medication and since starting this medication he’s has been able to tolerate his standing frame for longer and all of his seating for longer which in turn has meant that his hips position remains stable , holding off the inevitable operation for now, at least!.  This is a key discussion topic at each of his review meetings both with Dr Howard and Dr Monsell and we get his hips x-rayed and analysed every 3 months.

Our trips to Bristol are where his consultant focuses on his hips, spine and overall skeletal alignment and he has had his Botox injections, but these haven’t been without drama. Not only is the visit one where we are often told frightening news, as I’ll mention more later Harrison hates travelling in the car and the 2 hours there and back have been hell each and every time. There was also the time when he fell out of his special buggy walking down a steep hill to the hospital after parking. Falling head first with the seat still attached to him! (the chair seat connects to the wheel base which on this occasion came apart), his head hit the cobbled pavement leaving his forehead, face and nose in a bloody mess. Fortunately a nurse was passing and was able to rush us straight into the children’s A&E department, all of this before we’d even made his appointment!  We managed to make the appointment, although late and Harrison was still able to have his general anaesthetic to have his Botox injections. Suffice to say we park elsewhere now and we always double-check his chair is connected properly!

Wonderful friends

Friends and family support has been very important to us and when Harrison was 3 we met a wonderful lady called Avril. Avril lives locally to us and her and her husband Simon are foster carers to two girls, Vicky aged 26 and Paige aged 19.  Both girls are severely disabled requiring round the clock care, which they get with tons of love on top from both Avril and Simon.  They take the girls around the world on the most amazing holidays and go to tremendous lengths to ensure they both receive all the love and care that they need to lead happy, healthy lives.  You’d think all the effort they put into the girls would leave precious little time for anything else – wrong!  Simon and especially Avril go out of their way to help many families including us.  Avril fell in love with Harrison the instant she met him and offered to help me one day a week.  Her help has been invaluable and Harrison loves spending time with her.  She takes him out in his powerchair and they get up to all sorts, walks around Moors Valley and Poole Park, trips on the beach front train, she even gets him baking.  He has learnt so much and can even say her name.  In fact he talks about Avril (or “Aval” as he calls her) all the time!

Not only is Avril generous with her time she also tries to help the children she knows by funding equipment where possible. One day last year Avril presented Harrison with a walking frame that she found on Ebay. She knew he needed one that securely supported him and kept searching until the right one came up.  I couldn’t believe my eyes when I first saw him take steps by himself, something I thought would be impossible as he scissors his legs so much.  He’s so proud of himself when he stands up and moves his legs to walk.  Avril gave me the confidence to let him use his walking frame in Tescos and around Castlepoint shopping centre.  He can’t move very quickly and, if I let him, he cheats by pushing from both feet, plus I have to steer him in the right direction but I can’t express what joy it gives me to see him try so hard whilst sporting a huge beam on his face.  We’ve been so lucky to have Avril in our lives.

We’re also very lucky to have lots of other caring friends around us none more so than Sam and Richard and their daughter Lily.  They kindly look after the boys for the weekend several times a year, so that Jon and I get a break and can spend quality time together.  We’re so grateful, it enables us to recharge our batteries, have some fun and just think about ourselves for a couple of days.  It’s utter bliss but we always miss the boys and are very happy to have them home again, just how it should be.

Daily life improvements

When Harrison was a baby and as a very small boy he really struggled with car journeys and being in the pushchair. Some outings you just have to do, such as hospital appointments, therapy appointments, shopping trips etc, and I would grit my teeth and get on with it whilst Harrison screamed in the car.  I was desperate to take him out on walks like I did when his brother, Reece, was tiny but it was useless he just hated it and it stressed me out listening to him scream, so sadly I avoided it where I could.  Looking back I think Harrison struggled with motion and perhaps was uncomfortable in the car seat or pushchair.

I can’t remember when we turned a corner but we did around the time Harrison had his buggy changed by the Wheelchair Service.  He suddenly didn’t mind a walk and I started to manage walking with him to take his brother to and from school without him crying. Then bit by bit I made our walks longer and started to include a spin around Tescos to pick up something for tea and odds and ends.  I was thrilled and loved my new found freedom to walk with my gorgeous boy.  Now we don’t give it a second thought he comes with me everywhere and quite enjoys the attention from people we meet and he often calls out “ello” as we queue at the till. 

Car journeys are much better as well, possibly because he’s grown up a little and is more interested in the world around him but also because we bought him a much better special needs car seat, suggesting he’s now more comfortable in the car.

A few years ago friends of ours kindly gave Harrison a special needs trike that their son had outgrown.  At the time Harrison was far too small for it so we kept it in our garage and waited for the day when Harrison was big enough to reach the pedals.  In 2012 that day came and we strapped him in and took Harrison on his first bike ride with his brother riding his new bike too.  It was the most brilliant afternoon, no one cared that it was a very cold day we all had so much fun.  Both our boys enjoying their bikes to the max, priceless!  This is now a regular family activity of choice.  They both love cycling through the puddles – what child doesn’t like doing that?

In addition to enjoying his trike, Harrison has recently been taking interest in some of the things I’m doing around the home.  He’s become fascinated with our hoovers, the main one and our hand held one.  If I start to use either of them he shouts at me until I let him have a go.  So for Christmas he received a toy Dyson and his face was a picture when he unwrapped it and realised what it was.  My wonderful niece, Sophie, who adores Harrison, spent all Boxing Day afternoon pushing Harrison around the house whilst he hoovered continuously.  They both had so much fun laughing together. Harrison also loves to help hold my hand mixer when I bake a cake or prepare the batter for pancakes.  Then one day he started shouting “Um” (which his way of saying mum) and looking at something, I thought he was looking out the window.  He kept on and and on but I couldn’t work out what he was meaning.  Then it dawned on me, he wanted to play with my clothes horse!  As soon as I said the words he answered “yeah” very excitedly.  So I pushed his chair as close as I could to the clotheshorse and watched him squeal with delight as he tangled himself up in all the dry washing.  He thoroughly enjoyed himself, so I decided to ask him to drop the items into the basket and with some help he did just that.  He regularly likes help me do this now.  It’s so great that Harrison wants to get involved in these things, like other children do, helping mummy etc, but it doesn’t come without a host of problems.  He can’t do these things independently we have to help him and even then it’s not very easy.  His chair gets in the way or he can’t quite reach, he can’t grasp and release with his hands very well and he often wants to do these things when it’s just not the right time. Further more when we need to finish he screams his head off totally beside himself with disappointment!  Another harsh reminder of how tough life is for him.

Breaks Away

Having a break from your children is so important but equally it’s great to get away as a family.  It’s taken us a few years to try this as Harrison has always found being in the car difficult and he’s not great at night either.  So the thought of driving miles with him screaming, then to be on a flight for a few hours with him being uncomfortable, plus disturbed nights whilst away has always put us off from bothering.  However, this all changed in 2012.  We were told about an organisation called Make a Wish.  They grant one off wishes to children with life threatening or life limiting conditions.  It could be a family trip to Disneyland, to meet a famous person, to swim with dolphins, practically anything.  So we were lucky enough to have our first family holiday paid for, which gave us the chance to try out the travelling experience with Harrison and see how he would respond to flying, a hotter climate, different sleeping arrangements and different food and so on.  We had a few hiccups such as Harrison being violently sick all night over Jon on the first night. I was ready to come home back home straight away! We didn’t sleep at all the night we travelled due to awkward flight times so we would avoid travelling from Gatwick again but all in all, despite Harrison sleeping in one room with Jon and Reece in another with me, our holiday to Ibiza was a huge success and has given us the confidence to travel abroad again and take short breaks within the UK.

We took the boys on a two day trip to Longleat in the February half term of 2013 and stayed on a beautiful farm.  We had a wonderful time and then in the summer school holidays later in the year we had a wonderful trip to LEGOLAND.  Both the boys thoroughly enjoyed themselves once again proving Harrison can now tolerate longer car journeys and different sleeping arrangements.  Next summer we hope to drive midway down the French coast, our biggest challenge to date!

Home Improvements

We moved to our current house in Ferndown when Harrison was still a baby.  We chose it because it had plenty of downstairs space and the potential to accommodate Harrison’s needs as he grew older.  I instantly loved the house, it was light, spacious and vacant!  The only downside was the kitchen, it was very outdated but it didn’t matter.  Four years on in 2012 we decided to tackle the kitchen, extend out and open up the kitchen and joining lounge to create more getting around space for Harrison.  We also decided to improve our downstairs shower room at the same time and turn it into a wet room to shower Harrison in more easily and safely. Wow what a difference all these changes have made to all of us.  We have a gorgeous modern, spacious kitchen with plenty of floor space for Harrison to move between lounge and kitchen.  We now all eat and sit together without the dividing wall between the kitchen and lounge separating us.  It’s a far easier and nicer way to live.  I can’t say the building process was straight forward or fun however, we naturally went over budget and various problems were unearthed as we went along, so it took far longer to complete than predicted but we got there.  Thankfully we had some very welcomed financial input from our local authority going towards the cost of widening access points, knocking through the kitchen to lounge and the non-slip tiles in the shower room as all of these things are to help with Harrison’s special needs.  Our builders too were helpful and great chaps to have around but everyone involved were immensely pleased to finally have it all completed.

School

One of the happiest days of my life was the day we received a phone call from our Early Years department saying that Harrison had been given a place be at Victoria school. Choosing a school for any child is an important process and normally fairly straight forward, with most children going to their school of choice locally to where they live.  When your child has complex needs it a totally different ball game.  In the Bournemouth area we are lucky enough to have quite a number of special needs schools, however not all of these schools would necessarily be right for Harrison.  I took it upon myself to research each and every one of these schools and I visited them and spoke to head teachers and various members of staff.  In the end one stood out head and shoulders above the rest as being the perfect match for Harrison’s needs, this school of course is Victoria school.  That’s not to say that the others weren’t good enough it’s just that many of the children were able bodied and therefore not in wheelchairs.  I felt Harrison needed to be in a school where the majority of children who, like him, are in wheelchairs learning to cope with severe physical problems.  Harrison has always struggled to tolerate his seating and to accept that he can’t always be on our laps and so it’s important for him to be surrounded by other children doing activities in chairs and to realise life in a wheelchair can be fun, something unfortunately he has to get used to.

Harrison started his first day at school in January 2011, he was just 3 years old.  I drove him there, and talked to him all the way to help prepare him for me to leave him (and prepare me for leaving him too!).  His teacher, Gill, asked me not to come into the classroom as they find it easier to settle children in this way.  Of course he cried and I sobbed all the way home but I knew it was the start of great things to come for him and us. 

He began by attending Tuesdays and Fridays for the first few months then he was asked to go on Wednesday mornings so he could attend the weekly hydro therapy session with his class mates.  Within a couple of weeks I had to arrange for the school bus to take him and bring him home each day as his brother, Reece, was starting school too and I couldn’t be in two places at once! I thought he would hate being collected from home but in fact he took to it very quickly.  The driver and personal assistant are great with the children, just as long as Harrison has his dummy for the journey home he seems to behave very well!

Gradually Harrison learned to relax more around the children and staff at school and has built a close bond with Gill.  His crying has subsided after the teachers introduced discipline techniques and he now enjoys all his therapy sessions which include physiotherapy, speech and language, Occupational therapy, rebound therapy (trampoline session) and PE.

At the start of the new school year this September Harrison became school age and so now attends every day. It seems the more he goes to school the better adjusted he’s become. He’s grown up and developed beyond recognition.  His communication skills particularly are much improved.  Not only has he added many words to his vocabulary he also signs or indicates what he means.  For example if he wants to eat he says “Um” or “Addy” to get my or daddy’s attention then points to his mouth.  He’ll say “No more” when he’s had enough and uses eye pointing to indicate what he wants.  We are constantly bowled over by his understanding and methods of communication however we still experience regular screaming fits because of his frustration and/or little boy paddies if he can’t have what he wants!  Of course he can’t argue or verbally disagree with us so he just screams!  Somehow though these episodes are quickly forgotten, no matter how ear piercing they are, when he cracks a smile, does something clever and/or mischievous or has the fit of the giggles when his brother does something funny.  They do have such a fantastic bond it’s wonderful to watch them.

One of my proudest moments to date has to be watching him receive not one but two achievement awards from school on December 13, 2013 during the school’s annual achievements award assembly. The first was the Early Years Foundation Skills Award for his positive approach to learning and for his great sense of humour.  The second was the Physiotherapy Award for his overall improvement and trying his best in all sessions.  Quite a turn around when I think back to his relentless screaming every time I took to physio as a baby!  He really has come such a long way in five years and I’m overwhelmed with pride.  I wonder where we’ll be and what he’s be doing in the next 5 years, I can’t wait to find out.  Go get ‘em tiger!

And finally

Upon reflection, we are a million miles from the desperate darks days of Harrison as a baby.  We see improvements in him all the time and can imagine a happy future for him.  He’s a bright, happy, cheeky little boy with bags of determination.  He’ll always be limited physically but we’ve learnt to look forwards with optimism rather than fear.  Who knows if he’ll live independently as an adult, that’s too difficult to predict but if he continues to grow and develop at the rates he has over the last 5 years we’ve every reason to be excited about his future.

Watch this space for the next instalment about Harrison’s development.  Thank you for reading, Jo xx