Tuesday 14 November 2017

Recommended Reading 


Books are my therapy.  I love to read and escape into other worlds, absorbing characters’ experiences and feelings.  Reading fiction can help us to identify, empathise and gain insight into the lives of people from a different time or culture.  Snuggling up with a good book is my ideal retreat, where my mind (almost) totally switches off from everyday family concerns and work worries.  I enjoy reading a wide variety of literature and less-literary fiction, but l always seem to be drawn to novels that have characters with a variety of disabilities.  I think it is probably a subconscious yearning to connect with my son and understand how he experiences our world around us. 

There are many novels with characters with disabilities. Here are few of my favourites: 


Curious Incident of the Dog in the Nighttime by Mark Haddon provides a very, very humorous take on Autism. Quite heart-breaking in parts too as you see Christopher’s struggle to make sense of the world around him.  https://www.amazon.co.uk/gp/aw/d/0099450259/ref=mp_s_a_1_1?ie=UTF8&qid=1510868160&sr=8-1&pi=AC_SX236_SY340_QL65&keywords=curious+incident+of+the+dog+in+the+night+time&dpPl=1&dpID=51Js6G5I9PL&ref=plSrch


The Reason I Jump by Naoki Higashida is written by a non-verbal, Japanese boy with Autism using an improvised communication system. https://www.amazon.co.uk/gp/aw/d/1444776754/ref=mp_s_a_1_1?ie=UTF8&qid=1510868224&sr=8-1&pi=AC_SX236_SY340_QL65&keywords=reasons+why+i+jump&dpPl=1&dpID=51vtyhopbmL&ref=plSrch


The Rosie Project by Graeme Simsiom tells the story of Don Tillman who, although it is never mentioned in the novel, clearly has high-functioning autism.  Hilarious and uplifting. https://www.amazon.co.uk/s/?ie=UTF8&keywords=the+rosie+project&tag=hydrukspg-21&index=aps&hvadid=186565642315&hvpos=1t1&hvnetw=g&hvrand=7146873109324033818&hvpone=&hvptwo=&hvqmt=e&hvdev=m&hvdvcmdl=&hvlocint=&hvlocphy=1007015&hvtargid=kwd-45996568491&ref=pd_sl_9i7o0hpbgr_e


The Boy Made of Blocks by Keith Stuart - parents separate and struggle to raise and connect with their autistic son. This book addresses the strain of raising a child with special needs on a marriage. https://www.amazon.co.uk/gp/aw/d/0751563293/ref=mp_s_a_1_2/261-5859086-0830646?ie=UTF8&qid=1510945011&sr=8-2&pi=AC_SX236_SY340_QL65&keywords=boy+made+of+blocks&dpPl=1&dpID=41xB5xYifYL&ref=plSrch



Wonder RJ Palacio - not about Autism but a rare genetic disorder causing facial disfigurement. This book addresses the impact of disability on siblings, peer groups and schooling. It’s a wonderful children’s book about the importance of kindness. I read this to my Year 8 class every year at school. https://www.amazon.co.uk/Wonder-R-J-Palacio/dp/0552565970


Was This in the Plan by Steph Nimmo - I know some of you will have read this as Daisy had Costello Syndrome and recently passed away. Steph also has two 2 sons with ASD. This memoir is heart-breaking yet uplifting as Steph displays the most awe-inspiring courage and resilience as she faces what are most people’s very worst fears. https://www.amazon.co.uk/Was-This-Plan-Stephanie-Nimmo/dp/0995780625 


All the Light We Cannot See By Anthony Doerr https://www.amazon.co.uk/gp/aw/d/0008138303/ref=pd_aw_sim_14_1?ie=UTF8&psc=1&refRID=0SVN80A4GEMXV3WYCH63&dpPl=1&dpID=511qpsWcTyL  This stunning novel is set in Fance and Germany during World War 2.  There are two main protagonists, one of whom is a blind girl, living in Paris with her father who works in a museum. 




Picky Eating: What I’ve Learnt Over the Years

The reasons why some children are unable or reluctant to eat are  varied and complex and I am not a trained professional. I am just a parent with some practical experience of actually overcoming these challenges.
It’s fair to say, feeding Marcus was extremely problematic when he was younger, his feeding difficulties were extreme, and it’s no exaggeration to say that no-one really had a clue how to help.  His feeding difficulties were very complex and it’s only really with the benefit hindsight that I can reflect on what worked for us and what did not.  It’s important to note that all children are different and what works for one child is not guaranteed to work for another. However, you may find some of the following tips useful. 
Here are some of the things we learnt:
If your child won’t eat, don’t take it personally.  Try to meal times relaxed and pleasant. Easier said than done, I know.  This goes for siblings too.  Have meals together regularly. Talk. Play. Sit your reluctant eater at the table with the family so they are involved. If possible, let them put their food on their plate themselves. Always serve at least one thing you know they will eat. Give them a choice and some control over what goes on their plate (and eventually in their mouth).
Never force a child to eat.  Encouragement and praise but never force.
Throw the rule book in the bin.  Marcus only licked flavoured crisps for well over a year. Then he ate ‘orange spicy purée’ and  cake for every single meal for several months ... I know! But what was important was that Marcus enjoyed meal times and stopped being afraid to eat or try new foods.
It will take time, maybe months or even years.  Be patient and celebrate every single success, however small.  It also doesn’t matter where you are sitting; you might be sitting at the dining table together or eating on a plastic sheet on the floor. As long as your child is comfortable - being around food, touching, playing with and smelling food is where it all starts.
Eat out lots. Let your child see that food is fun and enjoyable.  It doesn’t have to be somewhere expensive either - a picnic in the park or your garden is ideal.
Think outside the box.  At one time, Marcus loved to chew paint brushes but wouldn’t eat food.  So, we made ‘edible paint’ (tomato soup) and put it in a paint pot with his favourite paint brush!
You may find this tricky (I did) but we have relaxed our rules about table manners.  Sometimes we allow the TV on or tablets at the table.  We let our children get down from the table whenever there is a danger of it all getting too stressful. Meal times need to be fun, enjoyable and safe.  Marcus loves watching himself on the iPad so we often video meal-times.  We sing songs, make silly noises, play games and distract Marcus while we put new flavours on his tongue and or feed him. Now he can feed himself but distraction remains a really useful tool when eating in a different setting or introducing new foods or textures.  We often let him watch his iPad if he’s eating alone but we insist he turns it off when we eat together as a family.  Marcus struggles to use cutlery properly.  Again we encourage him to use a spoon but we also give him finger-foods and napkins to help him eat in a more socially acceptable way.
Once your child is able to eat solid food, introducing new flavours and textures can be a huge challenge. Marcus started by licking crisps and we struggled to progress from that.  We were persisting with puréed food but then I was given the idea of using powdered flavours that would dissolve on his tongue.  This was a huge success.  We set up an activity with his sisters, putting various flavours in a small paint pallet (we loved our painting equipment).  They all dabbed their fingers and brushes in the flavours and tasted.  Marcus loved it.  We experimented with sweet, savoury and spicy, discovering Marcus’ love of spicy flavours. Marcus’ confidence grew and we added tiny blobs of purée to the paint pallet.  His confidence continued to grow as we gradually added more sauces and purées to the pallet,  and we learnt what Marcus liked and disliked.  We continued like this for a couple of months, always lead by Marcus until we all felt confident he was ready to try something new.
Following Marcus’ cues, we were soon able to feed Marcus a small bowl of ‘orange spicy purée’ twice a day.  ‘Orange spicy puree’ is simply a blend of orange vegetables such as sweet potato, carrot or butternut squash roasted with paprika, onion and garlic and blended to a totally smooth texture. This was the only savoury food Marcus would eat for about twelve months. Initially, a meal would be a single tea spoon of purée, slowly building up to a full bowl.  Once we had established this as a staple meal, I started sneaking other vegetables in.  As long as it was smooth, spicy and orange, everything was fine.  If the change was too dramatic, Marcus would refuse it. Very, very gradually, we mixed up the texture of the food.  Adding boiled rice or pasta before blending altered the texture but we had to begin my maybe just adding 4-5 pasta pieces and building up to a full portion.  Then we added cheese, cream or olive oil to ramp up the calories. After several months, we added a piece of chicken for protein.  Eventually, each change was accepted.
Meanwhile, Marcus was developing a love of cake.  We regularly took him to cafes and restaurants and fast-food joints to show him that eating was sociable and fun.  Even though he never ate, he enjoyed the social aspect of dining out.  He began to lick cake crumbs and the fillings and toppings often found their way on his tongue.  Again, over a period of a couple of years, this developed into a full-blown love affair with cake! So, for a couple of years he ate nothing but ‘orange spicy purée’ and cake!
Another lovely activity is decorating biscuits and cakes with coloured icing and toppings.  Marcus always ended up with sticky fingers which eventually ended up in his mouth.  We baked regularly and encouraged Marcus to lick the bowl and the spoon.
Orange spicy purée eventually progressed to curry! Curry progressed to Mexican. Mexican progressed to Chinese food. Marcus then started to really enjoy meat and fish!  This was huge progress.  He chewed it and spat it out for a long while - that was a pretty gross stage but we worked through it, making sure the meat was tender and cut up into very small pieces.
Macdonald’s Happy Meal soon became a firm favourite.  Marcus progressed from licking sauce using a straw to licking the salt from the chips to chewing and spitting nuggets and fries.  We encouraged him to eat from the tray and discretely cleared away the chewed food as we went along. Now aged 13, Marcus can clear away a happy meal as fast as most other children!
However, some textures took a very long time to tolerate and there are some that we are still working on.  Rice and couscous took ages to introduce; Marcus could feel a single grain of rice in his mouth and would work to to the front of his mouth and spit it out.  Pasta also took a while to tolerate but cheese tortellini with pesto and cream is now a staple easy meal.   Marcus still will not tolerate anything hard, crunchy or crispy which rules out crisps (potato chips), cereal and fruit.  He hates chocolate and sweets (hooray) and won’t eat bread. Breakfast is tricky but who says you have to eat toast and cereal for breakfast?  Marcus enjoys a plate of cooked meats, cubes of cheese followed by a giant slice of vanilla cheese-cake to set him up for the day!
 Other than that, Marcus eats most things now.  Not bad for the boy who didn’t eat anything at all until the age of seven.


Saturday 11 November 2017

Story of Hope

Hope is the thing with feathers 
Emily Dickinson, 1830 - 1886

 Hope is the thing with feathers  
That perches in the soul,  
And sings the tune without the words,  
And never stops at all,  
   
And sweetest in the gale is heard;          
And sore must be the storm  
That could abash the little bird  
That kept so many warm.  
   
I've heard it in the chillest land,  
And on the strangest sea;         
Yet, never, in extremity,  
It asked a crumb of me.

I am tremendously proud of my children. They are three rare, unique gems and I love their exceptional, distinct qualities. However, my son is the rarest of the three. A genetic mutation gave him a truly beautiful soul and a heart which is incapable of malice. This is his greatest gift to the world. He may never truly understand what he has given to me but he has already taught me far more than I will ever teach him.

Marcus inspires those around him to be the best they can be without even knowing that he does so. He has delayed development so everything takes longer and seems so much more difficult for him to achieve. It took three months for Marcus to produce his first smile and at twelve months old, he had barely met any other milestones. Each and every milestone, that many parents take for granted, has taken an inordinate amount of repetitive, difficult and often uncomfortable or painful therapy in order for Marcus to achieve.

On 20th October 2004, our lives changed forever. My world had imperceptibly shifted on its axis and that night while I cuddled my brand new baby boy, my nineteen month old daughter and my husband. I truly believed I had everything I had ever dreamt of, and more. We named our son Marcus, wanting him to grow up to be strong, successful, and dependable.

Marcus was bigger than we expected: 7lb 15oz and three weeks early. His skin was as soft as silk, loose and wrinkled like a boxer pup, as though he hadn’t quite grown into it. That first night, I noticed he didn’t feed well, but thought little of it. He was my second baby and I felt confident and relaxed. I wanted to take him home. The next day, Marcus was checked over by the Paediatrician who noted his droopy eyelid before discharging us.

After just three days at home, we made the first of many visits to hospital with Marcus. He had a nasty eye infection and his droopy eyelid was swollen. We were pretty concerned about his eyes; they looked really sore, very swollen and lopsided. Over the following two weeks, his eyes improved but his feeding was becoming increasingly problematic. I was breast feeding but knew he was not feeding for long enough or often enough. We had to take towels, cloths and several clean outfits with us whenever we ventured out as Marcus was vomiting after every feed. One evening, Gary and I were sitting on the settee looking at Marcus and Gary said, ‘There’s something seriously wrong with Marcus.’ I was shocked, appalled that he could say such a thing. He just had an eye infection and reflux. How could Gary even think that there was anything seriously wrong?

At three weeks old, Marcus contracted RSV virus and refused to feed altogether; he was now a whole pound lighter than when he was born and he looked gaunt, malnourished and neglected. I could barely look at my baby without crying. I felt so guilty; I had failed to meet the most basic requirement of a mother – to nourish and feed my baby. We were both so desperately worried about him now. Reflux medicine was prescribed to control the vomiting. I hoped and prayed that the drugs would start to work, that he would begin to tolerate his milk and grow.

The drugs made no difference and I began bottle feeding to be sure how much milk Marcus was receiving. Life was becoming increasingly difficult by this stage. Arching his back and screaming every time the milk touched his tongue, I was spending almost all day feeding Marcus, drop by drop. He screamed whenever when you brought the bottle near him. Despite spending every waking minute trying to feed him, he still wasn’t taking enough milk to grow. Marcus also slept through at night; I’d have set the alarm clock to wake me up so I could force feed Marcus – it was such a dreadful time. I’d sit in bed sobbing, why won’t my baby drink?

At this stage, Marcus was admitted to hospital where his heart defects were discovered. His milk was changed, more reflux drugs were added and naso-gastric feeding commenced. We went home for another couple of weeks but Marcus still didn’t gain weight. The vomiting worsened as his gut was unable to cope with the increased volumes of formula that were forced upon him with the naso-gastric feeds. Leaving the house with Marcus was impossible due to the vomiting and every time someone asked about his NG tube, I struggled to fight back my tears which were permanently threatening to make an appearance. I didn’t know what was wrong with my baby, or why he wasn’t growing.

When Marcus was 15 weeks old and had just regained his birth weight, the doctors decided to perform biopsies of his gut and insert a central line so they could get some much needed nutrition into him. His gut biopsies were normal, as was the barium study, MRI scan, chromosome studies and abdominal scans. No-one could explain why Marcus was so sick and struggling to thrive. Marcus was fed via parenteral nutrition and a naso-gastric tube for the following few weeks.

Marcus remained in hospital until he was six months old and was a very regular patient on the gastro ward for the first 2 years of his life. On his first birthday, he weighed just under twelve pounds and by his second birthday he weighed just under 20lb.

Marcus’ first two years of life were definitely very challenging but after his second birthday, everything began to improve.

Marcus received his diagnosis of CFC Syndrome and for me, the diagnosis was a huge relief. Knowledge is power and being able to connect with the CFC community around the world has been a lifeline for our family. CFC International has provided our family with knowledge and support when we have needed it most. Raising a child facing medical and developmental challenges can be an isolating experience but having a ‘family’ who understand can be hugely comforting. The advice and support I have received from fellow parents and professionals, as well as the resources and research projects coordinated by CFC International has also been hugely beneficial.

Fortunately, Marcus began to take his milk orally so he no-longer required tube feeding. Encouraging Marcus to drink enough milk to sustain himself was extremely difficult and he lost a huge amount of weight at first. However, if we thought that was challenging, encouraging him to eat solid food was a far greater challenge which took almost another five years to conquer. I read every book and website that I could lay my hands on; visited every speech therapist, dietician and specialist in the North East of England; we travelled with Marcus to CFC conferences in America and the UK, desperately trying to discover the Holy Grail of nutrition and feeding! I was determined that Marcus should eat. I don’t know whether this was faith, pure pig-headedness or even a deep-seated knowledge that my son wanted to eat but I refused to give up; we refused to give up and as a family, eventually, we all helped him to enjoy a ‘normal’ diet.

Gradually, as his health and nutrition improved, Marcus’ sociable personality started to shine through. Aged two, he produced his first word using Makaton and more signs soon followed. Soon he was pointing, gesturing and signing to communicate with everyone and now, age eleven, he is still making good progress in his speech and communication which is still delayed but improving steadily. He needs lots of repetitive reinforcement but he loves to communicate and amazingly, he loves to read.

Also, Marcus’ motor -skills were severely delayed and when he was younger, no-one could say for sure whether Marcus would ever walk. Daily therapies included time in a standing frame wearing splints as well as stretches and exercises. Eventually, Marcus learnt to shuffle on his bottom and roll along the floor to reach his toys. Aged four, he took his first steps and we were the proudest parents! As I write this today, Marcus uses a wheelchair when he needs to be somewhere quickly or when we want to walk a considerable distance but he is able to move freely around the home and at school without too much difficulty.

marcus-2.jpg

Marcus currently attends a main-stream school with his sisters. Again, this is testament to Marcus’ determination and resilience. School is definitely not easy when you have cognitive delays; however, Marcus’ teachers tell me that his strength of character and loving nature are an inspiration to his classmates. They care for him, value his contributions and in turn, he learns from sharing his learning environment with positive role-models. There are many aspects of learning which are challenging for Marcus but he continues to surprise and delight us with his achievements. His reading is astonishing given that he cannot physically pronounce all of the letters of the alphabet, his knowledge of numbers and shapes is super and he adores stories, music and song. He may not know the words but his heart sings with joy.

I have huge hopes for my children. I want all three of them to be the best they can be; of course, that means something different for each of my children. For Marcus, I want him to achieve a degree of independence. I don’t know how much support he will need to achieve that. I don’t know how far his fragile body will carry him. What I do know is this: I will continue love, support and encourage him in every way I can so that he can continue to make a contribution to our community.



Check out our 'Story of Hope' on the CFC International Website:




Wednesday 15 February 2017

Lego Club 

Marcus has been going to Lego Club at Richmond School every week. He usually goes along for the social (which is a fantastic thing in itself) but is becoming increasingly interested in building things with Lego.  Today, he bought a Lego fire engine with some of his leftover Christmas money and helped me to build it.  He didn't lose interest or wander off, but watched, followed the instructions and sometimes helped find a piece or fixed something together. This is such amazing progress.  Then to my amazement, he actually started playing with the completed engine.  Marcus hardly ever plays in the traditional sense but I am seeing his creativity develop very gradually. Every long journey is made up of thousands tiny steps and Marcus is so lucky to have such a great team helping and supporting his learning at school. 💙