Di's Story

At the centre of this story is Craig.

Craig - lover of music, swimming, people, and sunshine.

Craig, whose genetic disorder - chromosome 18q- with mosaicism, attaches the label complex needs together with a string of medical terms and jargon.

Craig - whose ability to embrace life and share joy amidst everything keeps us right, and continues to teach us so much.

We are a family of four. Di and Kit play the grown ups, while Craig is now fourteen and his sister Kara is twelve. Where to start with our story ? Perhaps at the beginning….but also with mentioning the motivation for telling it - which is to share a little of the importance of Charlie House in our lives. Life always presents challenges and difficulties, against the list of opportunities and joys. Charlie House continues to give us the chance to experience and focus on the fun and positives, which makes a huge difference as we work our way through the harder bits.

Our pregnancy with Craig was good and we planned for a home birth ; however concerns during a long labour took us into hospital. Craig was born covered in a meningitis style rash, signalling a condition which though rare, the medical team had fortunately seen in recent months. Craig had thrombocytopaenia, very low blood platelets. Though this carried risks of bruising and bleeding, it could be corrected with transfusions ; so Craig was rushed to special nursery where we spent the first couple of weeks of his life, his platelet levels very gradually rising thanks to the transfusions he was given. He had a few other oddities, including a talipes left foot ( turned completely out ), slightly odd facial features, and a small scoliosis. Hypotonia ( low muscle tone, leaving him floppy ) soon became apparent, and he was slow to feed. Hearing screening showed him to have moderate hearing loss. Tests were taken but showed him free of any genetic disorder.

So the beginning was not as we planned and we were absorbed in simply keeping up and trying to take in and understand, as well as connect with Craig through plastic walls. Only I was able to hold him and just for feeding, with the risk of any bruising causing him serious complications. I had a bed upstairs in a ward where other mothers had their babies by their side. Kit had to go home alone when he was not with us. I was determined to breast feed, which meant walking down to special nursery every three hours, then being sent away to rest - amidst the cries of the other babies. Craig’s platelet levels were good enough to go home after two weeks ; though we needed to go back for regular checks and follow up appointments. This coincided with the end of paternity leave, so Kit was almost immediately back to work as we tried to shake off the routines of special nursery and find our own at home. Craig also had a plaster cast on his left leg - at that time a new way though now a regular one to try and straighten a talipes foot. This added an extra consideration to nappy changes and bathing as well as general moving and clothing. It also meant a particular joy when at six months Craig could - and did, enjoy his first bath and swim.

Craig managed to feed but took a long time. He put on weight but only a little, and so at our six week check, where Craig’s nystagmus (eye shake) and difficulty coordinating his eyes was also now visible, we were re-admitted to hospital under the judgemental label “failure to thrive”. Further tests showed up his rare genetic condition. Though we didn’t want this diagnosis, in another way it gave some relief ; I had intuitively felt there was something and struggled mentally with the earlier results saying nothing was wrong. At least this result made sense and gave us something to work with. Little was predictable though ; the literature from the American Chromosome 18 Registry and Research Society suggested a wide range of possible physical and cognitive issues across a spectrum from minimal to severe. Many 18q- children learn to walk and talk, if not till later. Some function fully, some are fully dependant with very low mental development. Craig is mosaic, meaning only fifty per cent of his cells are affected - making him even more of an unknown. The one thing the geneticists clearly predicted was that he would be small…he played along for the first few years,…however we think he may have heard that discussed too many times and he is not having any of it now !

We went back home again with an increased list of hospital check ups and clinics to attend, which took a lot of our practical and social energy. Like many, we had kept up with other families we met at antenatal classes. I much valued this group and the gentle inclusion as I dipped in and out, and Craig took so much longer than the other babies to feed. As the others were going back to work and discussing swapping baby sitting, the true meaning of Craig’s “developmental delay” kicked in. We had no reliable routines with Craig - feeding was still difficult and sleep was an elusive moving feast. I think I had naively thought / held on tight to the hope that “delay” meant we would catch up, but the gap was only widening and we were being left behind. Though it is not until far more recently that I have come to accept the “severe” in front of the term developmental delay. So much time devoted to medical visits left less time and energy for social meeting. Craig was not always settled enough and those his own age had different needs now. Social contact began to be more limited.

However, against the backdrop of medical appointments and concerns, Craig’s giggle was infectious. He loved meeting people and sharing his smiles, and he shared his joy in the world around. He particularly loved the sunshine, which would bring him happiness amidst many discomforts…..though if the sun went in he had lots to say about that, until it came back out again. He also loved swimming and stories, songs and music.

Craig was almost two when we welcomed Kara into the family. Further tests had shown Craig’s genetic disorder to be completely random rather than inherited. His thrombocytopaenia though was thanks to his parents, so would affect further children. The severity of this could be reduced by weekly immunoglobulin transfusions through pregnancy ( which turned out to take all day, once a week ). Kara also needed time in special nursery at birth and platelet transfusions, but at least we were expecting this, and she was strong from the beginning and able to leave hospital after a week.

While we still hoped Craig might walk, ( he was keen to try but very floppy and had difficulty coordinating movements ), it was clear he would still need wheels at least while Kara did. So we had moved from our happy but third floor flat into a house which would afford ground floor living for Craig. Craig still did not sleep at night so giving Kara a separate bedroom and opportunity for peaceful sleep also felt a priority.

Kara thrived, leaving us joyfully astonished as milestones overturned. Craig being our first experience, this was extra wonderful and amazing. I remember my complete disbelief at putting Kara down in a cot to go to sleep - and she did !! I had not been able to put Craig in a backpack or baby bouncer due to his lack of head support but Kara enjoyed both, and I think bounced enthusiastically enough for both of them !

There were mad moments. Craig needed top up tube feeds - which for him took nearly an hour on top of feeding. Kara needed breast fed. This needed careful timetabling and there wasn’t always room for much else, though it was possible to do both at once, if in a fixed position with a feeding tube tied to a music stand. There were special moments. Craig still played on a mat with objects above him ; Kara could lie next to him and play too ! There was the joy of going out in the sunshine together, of putting both children next to each other in a bucket swing and the giggles as we pushed them.

Kara toddled, Kara walked. Craig got a special buggy, then he got a wheelchair. We became acutely aware how many ( most ) of our family and friends live upstairs, and how difficult and then impossible it was to visit them. We got a hoist installed (a whole other, showery story in itself, as a water pipe was burst in the process !). We adapted our bathroom to a wet room. Craig went to special school, Kara went to mainstream. We juggled and juggled to be in two places at the same time to get them both there and back each day.

Craig still didn’t sleep regularly.

Craig has had many difficulties along the way. Constipation and reflux have always been issues to varying degrees, in balance with medication at some times more than others. He has worn ankle foot orthotics all his life since losing his plaster cast to try and hold both feet straight, and to give support for standing and walking. Both Craig’s feet are “rocker bottom” with bones in funny places and have remained small. He often has pain from his feet though they do allow him still to stand.

In 2015 Craig was diagnosed with myoclonic epilepsy. This was after a couple of years of uncertainly over his strange exaggerated laugh like movements…..a team of doctors were unsure as his brain scan patterns were so off the scale anyway….but his response to medication was in line with the diagnosis and reduced these episodes. He slept more…..too much in fact at first. I remember that time of getting some decent sleep after years without and literally feeling my perspective on all around me widening. It is hard to quantify the effects of long term sleep deprivation. Mostly we did not bad at getting used to and getting on with, but I do remember the fuzz clearing a little and acknowledging its huge impact.

Craig’s scoliosis also got worse. He has a double curve - an S shape in his spine. Because it bends both ways it oddly but wonderfully allows him to sit almost straight up. We attended clinics in Edinburgh and Craig wore a Boston back brace for years, with the potential of surgery as he entered his teenage years. The back brace was a love hate relationship in its beginning. It gave him support but he could not eat with it on, as he was supposed to be able to….it also needed to be taken off and put on around any nappy changes. And he was supposed to sleep in it - another factor challenging sleep ! He did really well ( and so did we ) at getting used to it, and as he got stronger was able to eat in it too. He sometimes needed a break from it - particularly if he had a sore tummy, but as he has grown has became more comfortable with the support it gives him.

The curves worsened and we agonised with decisions over spinal fusion surgery - putting in metal rods to hold the spine straighter. The benefits won over ; we decided to go ahead and so organised for family life around a few weeks stay in Edinburgh followed by at least six months rehabilitation. Extensive pre-surgery tests had looked positive, but after three hours under anaesthetic during which surgeons had struggled to get lines in, Craig’s blood pressure was low and would not respond to medication, forcing the medical team to make the tough decision to abhort. That was a scary day for all. So Craig has a bendy back and still wears his back brace. These days he needs the support it gives him to sit. We are really lucky that so far the bends do not impact seriously on internal organs or leave him in constant pain , though it does impact his lungs slightly, and he needs regular lie downs and stretches.

Craig also has problems with both his hips now - his right hip is half out of joint , and the top of the femur on his left hip has slipped. Both are issues for which surgery has been suggested ; however due to the unpredicted problems under anaesthetic for back surgery, this is too risky for him.

Alongside this Craig has continued to love swimming and developed his very own ways of moving in the water. With hearing aids he has always used his hearing to listen intently. Due to myelination issues, Craig’s brain takes longer to process things ; he just needs longer to think and understand things so goes at a slower pace, However he concentrates immensely and engages well to the best of his ability, In a group he is so busy listening that he may not seem responsive, but one to one he enjoys engaging in conversation ; though he cannot coordinate words he can say a lot with a range of tonal sounds when given engagement and opportunity.

Craig is very musical. As a baby and ever since, much can be eased by singing to him, indeed regularly more with singing than with speaking. I often feel that music is his first language. Even as a young child he would put aside any discomforts and enjoy a full classical recital with rapt attention, though would cry at the end when he was then so tired. It has been a joy to take him to musical events of all sorts, though a little stressful when anyone tries to give an introductory talk and Craig protests; he came to hear music not talking !. Craig’s joy and response to music has led us all to explore and enjoy all kinds of music more fully.

Craig enjoys choosing songs, stories and playing games on his specially adapted computer which he can navigate with a single press big switch. It is a huge excitement that despite nystagmus and very short sight, both his eyesight and technology have developed to allow him to now use an eye gaze system. Though use of his hands is very limited, his eye gaze allows him to explore playing guitar, and drums, as well as playing musical games.

The move to our house and physical alterations we have made to it are the obvious adaptations in life we have made. I worked very little in the early years, and just a little with periods on and off more recently, while Kit has also bypassed travel and career opportunities in keeping home needs met. Our lifestyle is now focused around wheelchair accessibility, and Craig’s routines and needs, and we are still learning and getting used to planning any limited travel around Changing Places….locations and opening times.

As Kit and Di we had been regular hillwalkers. We had expected to take our children with us to the hills. Due to poor head support, Craig could not sit in a backpack until he was about four - when we found an extra supportive one which with a bit of extra cushioning and straps, fitted. Kara at this time was in and out of a backpack. Craig was not comfortable for longer periods and soon got too big but there were a few months where this arrangement gave us the great joy of getting to and sharing favourite places with both our children. We have not been able to take Craig up bigger hills but during these months we reached the tops of Clachnaben and Bennachie.

Next, we found a special “rehab buggy’ , like a baby’s all- terrain three wheeler, only for a bigger child. What huge excitement arranging a trial and deciding to buy it. We were now limited mostly by our ability to push it (!) as Craig was bigger , so big uphills were still elusive, but where wheelchairs couldn’t do tree roots and rougher terrain, the buggy could. One of our first trips took us around Loch Muick. It also helped us visit special friends in Fair Isle as a family. Thanks also to all the support from them, we posted buggy, medication, nappies etc ahead and lifted and climbed on / in to the small islander plane from mainland Shetland.

Hillwalking was more than just fun and exercise to us, it was a space of nourishment and recharge, and part of what we did together. Thanks hugely to Kit’s parents and some great carers and respite we have had occasional hill walking days over the years. But we have also had to work hard to find other ways to meet our own needs. As well as the time to do so.

At some point past the early years, the constant sleep deprivation was getting the better of us. We had to wait a few years but we were lucky enough that Craig was able to begin attending Archway, Dyce for overnight respite. Much as we needed the respite, it was a very hard thing to get used to, for all of us. The team at Archway Dyce did and do a wonderful job in caring for and having fun time with Craig. It gives him a valuable piece of semi-independence. For Kit and myself it is not just sleep and physical respite, and a bit more time doing things its hard to do with a wheelchair with Kara ; it is also a mental break. Craig needs one to one support with everything - feeding, playing, changing. He needs someone to look out for him, and help think what he needs next. By providing a gap, respite reflects back to us how constant that is, as well as gives us the chance to just stop and / or widen perspectives for a little. On a practical side we have been able to change our flooring to something more suitable for wheeling chairs and a dripping shower trolley over, and catch up with other essential household jobs during respite times. And, after a few days respite, it is a joy to welcome Craig home and focus again on his special smiles, humour and sensitivity.

The respite we have experienced fuels our involvement and support towards the building of Charlie House. Due to numbers and levels of medical need, many families cannot currently access overnight respite. We are so aware of how much help this is to us. and therefore how much it is needed by other families.

Charlie House has been an important part of our lives over recent years. My first involvement was at the end of Craig’s nursery years. Craig was lucky enough to attend the Raeden Centre for children with special developmental needs, addressing education, medical and therapeutic needs together. It also gave support to parents and a chance to meet others. However, despite all protests, Raeden was closed just as Craig moved to school. I heard about a parents meeting to discuss Tracy’s idea of creating a new centre to include respite and went along. Being conscious of the need and value of the many supports we had received we wished to ensure support for future families , and also address the huge need for respite that was lacking in the North East of Scotland. Some families at this time were travelling to access CHAS Rachel House in Kinross to gain valuable respite, but this was difficult and the journey too much for some. So the vision of creating a respite facility in the North East emerged to fill the gaps and meet increasing needs.

After a couple of years of meeting and planning, a charity was set up and ready to launch serious campaigning toward building Charlie House. Plans for the respite centre were underway as were discussions toward a site and meanwhile, a focus on providing current support to families through activities continued. Personal circumstances meant I stepped back at this time, and that I only appreciate all the more the effort and energy that Tracy and her fantastic team have put in to make Charlie House into what it is today.

We all as a family benefit hugely from being part of the Charlie House community. Despite our best efforts, there are many “regular” activities (going to visit places, walks) which are difficult for us to do. This can be hard for friends and family to understand, and it can be very stressful trying to keep up and join in, or else just step out. This does limit social involvement and contact. Other things are possible but require significant effort, planning and preparation, to ensure access, nappy changes, food, medication, and back up toys and equipment are prepared. However, we have really enjoyed going along to Charlie House events.

Through family activities we have been given chances to do things we would have thought too challenging without the help and support. For example, I had known for a long time it was possible to take a wheelchair on to an ice rink, though never quite got to trying it ; but in an organised Charlie House group it was less daunting, not least as we weren’t the only ones….and Craig loved the movement and sensation. Last summer, I would certainly have looked at the ramp down to the boat for a dolphin trip round the harbour and been too scared I would not manage the steep push back up, or any control down, but with the calm reassurance and physical help of the Charlie House team and boat crew, it was not a problem. It was indeed a very special treat. It has been so wonderful to have things which are accessible to Craig and hence to all of us laid on, and an environment where our needs are thought of and understood so we don’t have to worry or apologise constantly. It gives a lift which lasts beyond the moments to do something fun, different and special.

It has also been wonderful to meet other Charlie House families. Often we are so busy just trying to keep up with daily needs, it is hard to meet people. It is so good to meet others who we know have similar concerns and understanding, All the children and families within the community are special in their own ways and it has been a joy and privilege to meet and share time with them. Also inspiring. We find we can genuinely go along and enjoy the Charlie House activities without being on edge as we are in so many other situations. This is thanks to the other families as well as to the amazing and wonderful teams of staff and volunteers at Charlie House who put so much care and attention into making sure all runs smoothly and everything is thought of for us.

As well as the family activities, Kara attends the Charlie House siblings activities regularly. Again these have been invaluable in giving her something special and a space in which she can relax away from other worries and have fun. There have been many wonderful activities- including some which she has wanted to do but we have not managed to organise for her. At home, there is unavoidably a lot of focus on her brother’s needs and they often dominate what does or doesn’t happen. It is incredibly valuable tor her and other siblings to have time and activities which are special for them.

As a family we also have been lucky enough to go on short breaks to the Calvert Trust Centre at Kielder, thanks to Charlie House. Visits over a number of years have given us some truly wonderful times, as well as strengthened our relationships with other Charlie House families and sense of being part of the community. Kara has developed some valued friendships with other siblings whilst at Kielder. The Centre is an amazing place, opening access to outdoor activities for all . It has been exciting to see Craig enjoying being out in a canoe on Kielder Water, and for both children to go together on the zip wire and king swing. And wonderful to have accommodation with full accessibility and facilities including hoists, and the company of others who understand if we have to adapt plans as we go. Family time in the hydrotherapy pool has been magical. Though the journey there is an undertaking, knowing all is set up for us when we get there, and there will be other Charlie House families there makes it really feel like a break. It is hard to explain just how big a thing that is. As Craig is bigger we are now fully reliant on hoists, changing places, and accessibility. This means that going away from home is not impossible, but we do it minimally now and find it best to set out without the concept of “holiday” in our heads. So getting a “break” is just huge !

Charlie House gives us activities and experiences which remind us of the joy, the positives and the special things which are part of our family life, the regular chance to re - focus on them amidst the ongoing challenges. The connection with other families and Charle House team remind us we are not alone in our special circumstances, indeed we have some wonderful company and support. It is amazing and exciting to see how Charlie House has grown, and how far the charity has come already. And also how all of that only heightens the need for its ongoing vision, to build Charlie House itself as a respite centre. We know the value of respite and support and how much difference it makes to all our family ; and we also know the need for this to be there for others,

I began writing this a few months ago, before we entered the coronavirus pandemic. It is now eleven weeks in and as lockdown eases for some, Craig is in the high risk category so like most other Charlie House families, we are still isolating. I cannot finish without mentioning that the ongoing support through this time has been invaluable. Through the Community Facebook page there has been discussion and support, as well as regular ideas and activities, and opportunities for virtual get togethers. Knowing these things are there is sometimes as much as doing them, as is the flexibility and understanding toward circumstances on the day. However, we have valued the friendly contact as well as enjoyed the activities we have joined - including siblings and family bingo, foundation therapy, stories, lego challenge and chats. We have also received special gifts in the post giving us fun things to do. Amidst time full with day to day care and needs and ongoing isolation, these things are significant joys, and we hugely value the care and kindness with which they have been given as well as the things themselves.

Thank you Charlie House team as ever for your fantastic thought, attention to details, and ongoing care and support. Thank you to all who give to and support Charlie House in so many wonderful ways. There is still much to do towards building our respite centre ; however Charlie House currently has and does make so much difference.