My Child is Just a Child!

First day of preschool

One day, back in 1983, I was collecting Ruth from nursery. The headteacher had been glad to have Ruth in her powerchair in this mainstream school from the age of 3. She stopped me as I came through the door and asked for a word.

Not about Ruth, I discovered, but to ask my advice (as the parent of a child with “special needs”) about how she should handle a different child’s needs. The little boy in question had a facial disfigurement. “So what’s the problem?” I asked. “Well”, she said, “the teachers don’t know how to deal with it.”

I immediately assumed that this meant there was a problem with the boy’s relationships with his class-mates, so I asked her how the children were reacting to him. “Oh! They don’t notice!” she said. “So what’s the problem?” I repeated.

It turned out, of course, that the problem was entirely in the teachers‘ minds. They were not used to the way he looked and his disfigurement made them feel uncomfortable. The problem was not one of integrating the child with non-disabled children. The other children just saw him as one of them. The problem was the adult pre-conception of differences, creating a problem when there wasn’t one.

I suggested to the head that she tell her staff to follow the children’s example, and ignore the child’s disability, and as far as I know, she took my advice.

This sort of thing still happens. Imaginary problems make the prospect of meeting special needs in a mainstream setting far more complicated than it needs to be. That is where we, as parents, need to step up. We know our child better than anyone, and we can give the staff the confidence they need.

It’s true that we made huge strides through campaigning in the 70s, 80s and 90s. However, inclusion has been made “normal” in a way that sometimes lessens parental involvement. And the “special” label is still there, affecting how children with special additional needs are treated. The educational purpose of integrating them is often set aside for certain times of the day to meet “special” aims laid down by health professionals and others. The special school model sometimes encroaches into the mainstream, seeing the disability first and then fitting the education of the individual child around it, rather than the other way around.

Parents are key to making sure that in their child’s case, this occurs as little as possible, but how easy is it in your child’s school for you to influence your child’s daily experience of education? In my experience, systems and procedures are not the key. Relationships are. My good relationships with school staff always made the difference. As parents we have to work hard at it, but don’t forget that teachers are individuals too! They need to learn and develop and usually are keen to do so. They need and deserve help and respect. Many of you reading this will be experts in encouraging training of this kind!

The main issue is still the same. Do we see a child, and then treat the extra difficulties they have in a pragmatic way, or do we see the difficulties first, and categorize these, losing sight of the child behind them? And how can teachers see each individual with open minds and hearts, if they are dealing with a classroom full of difficulties? The point is they need our expertise. Let’s not let our role end at the school’s front gate. Let’s help them.

Lou

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Some thoughts on … Nutrition for people with Spinal Muscular Atrophy (SMA)

SMA Food

In general, intentionally putting on weight when you have SMA is only a good idea if the weight is useful muscle (although there is an important exception to this idea below). Increasing the amount of fat on a person’s body is adding ‘dead-weight’, the body will only use it as nutrition in lean times and, when the muscle power available is limited, it is more likely to lead to exhaustion than to contribute to a person’s well-being. Once a certain level of body fat is exceeded it is counter-productive to maintaining muscles in normal daily living and so the muscles tend to deteriorate since useful exercise is now beyond their abilities.

There are times when it is necessary to build up body fat, typically when you are expecting not to be able to eat so easily or to lose your appetite, and especially when your need for energy increases at the same time. These might be in the early autumn (fall) and spring seasons when there is a risk of colds followed by chest infections and also, especially important, before surgery.

The diet needed to maintain peak performance for someone with SMA is, therefore, one which an athlete would use to build up muscle for a competition … pretty much the daily challenge faced by those with SMA. Think protein for muscle building and only the amount of carbohydrate needed to maintain input calories, likely to be around 1,000 kCal. More than this is likely to put on fatty tissue, or simply not to be adsorbed.

Also note that around 25% of the body’s resting energy supply is expected to be used by the brain1, however in the case of individuals with SMA this proportion is probably higher as the muscular proportion is likely to be reduced. Add to this that heightened intelligence2 is normally associated with SMA leading to, perhaps, choosing foods which provide energy for brain development and function (Vitamins B12 and D3, Omega 3, Creatine3).

The amount of protein one should aim for in the diet is around one gram of pure protein per kilo of body weight (tuna is 26% protein; lean steak: 36%; chicken breast: 30%; egg: 13%; milk: 6%). This is a large amount of protein by ordinary nutrition standards, and may be difficult to eat if not carefully thought out so check out protein to calorie ratios for various foods. A solution which is fairly easy to accomplish is to liquidise food to make it easy to swallow, but other stratagems can be used too, like whipping a raw egg into freshly mashed potatoes.

When liquidising food, remember that it is probably being prepared for someone with a fairly sophisticated palate. You are making the food easy to eat, not preparing food for a baby, so herbs and spices and strong tastes in general may well be preferred and a range of textures will also make it more interesting, but be prepared to change the amounts of flavourings used in a dish when you develop recipes to be eaten in liquidised form as they will taste slightly different from their un-liquidised versions.

One of the problems faced by those eating a high protein diet can be constipation, particularly if red meat (see below) is a main source of the protein. However increased muscle tone can improve bowel function for those with SMA. If a balance can not be achieved be prepared to use a gentle laxative as necessary. Ex-Lax (“magic chocolate”) is a stimulant laxative for very occasional use, which is often highly acceptable to children; however make sure the amount matches body weight since you can lose nutritional value by clearing bowels too soon (you’ll probably be using a quarter of a segment at a time). Overuse of stimulant laxatives can reduce bowel strength so, if it impossible to regulate bowel movements with diet, consider a regular stool softener like Movicol.

It is possible to increase the protein content in your diet by adding protein powder available from the suppliers used by athletes and fitness enthusiasts, but do take great care in working out the correct amounts. Again, beware constipation.

Finally, as any owner of young animals knows, changing foods is difficult. Don’t try to jump straight into a high protein diet from a starchy one, the body simply won’t be ready to assimilate it.

Accessing the Energy

Once the diet is becoming more useful to feed muscles you need to consider how it is going to get to those muscles in a usable form. The transport of energy in an SMA affected body is slightly messed up, if only from poor circulation in the extremities and the lack of the distribution mechanism inherent in moving limbs, etc. When food gets to the muscles there are things which can be used as dietary supplements to make take-up more efficient.

L-Carnitine4 carries energy to muscles in an easily used form. It has a fairly short life so it can’t carry energy to store and use at a later date, but only in the short term. It is available from red meat and animal tissue in general and as a dietary supplement; there are even vegetarian forms available.

Creatine binds the energy available to muscle tissue in such a way as to preserve it (like a store cupboard); the bond breaks easily when needed releasing the energy for the muscle to use. The body makes its own Creatine but it can be supplemented in a powdered form often taken with glucose. There may be no benefit from supplementing it if the body is naturally at capacity, as can happen with some people, but excess Creatine is excreted so there is little risk from taking too much. If you take Creatine, warn your doctor if you have a urine test as it will show up and cause concern.

Athletes use Creatine to build muscle power, typically in doses about three times what their body is naturally producing. Rumours of Creatine causing kidney damage seem to be unfounded5: “In 2004 the European Food Safety Authority (EFSA) published a record which stated that oral long-term intake of 3g pure Creatine per day is risk-free. The reports of damage to the kidneys by Creatine supplementation have been scientifically refuted.”

Salbutamol makes take-up of energy within the muscle more effective. There is now a substantial number of people with SMA who have a successful track record of beneficial effects from the systemic use of Salbutamol. A side effect of this is to build up muscle tissue rather than fat deposits.

Swallowing

The problem with a high protein diet is that many of the foods are quite hard work to chew, and after chewing to swallow. The use of a liquidiser/blender is an obvious starting point but care should be taken not to turn all food into an amorphous mush.

Some people with SMA also report that nobody has taught them how to swallow successfully. Frequently, taking food by mouth is a very real problem, but surgically by-passing the need is not necessarily the best solution if instruction, diet and exercise can be used to avoid intervention. Any surgical implant increases the risk of infection on a daily basis in a person who is already dependent on complex care.

The instruction needed is:

  1. Chew food in a reasonable quantity, too little is as bad as too much.
  2. Push food to the front of your mouth and hold it there with your tongue.
  3. Breathe in while the food is safely away from your air-way and hold your breath.
  4. Now swallow. If you need to breathe, or if the epiglottis happens to relax as the food passes, the air will be going in the opposite direction to the food and the risk of choking is very much less!
  5. When the food has gone down, breathe out hard.
  6. If not everything has gone down properly first time repeat until all the food has gone from your mouth.

The use of nutritional drinks like Fortisip has a very proper place (Fortisip Extra has 20g of protein in 200ml) as they are, after all, a balanced diet in a bottle, and are easy to drink. Experiment with the available flavours, some are much nicer than others but not everyone agrees on which ones! Don’t forget to use the swallowing principle above while drinking as well as when eating.

Energy snacks are also very useful. It’s worth categorising them into fast energy (Bounty bar which is made of coconut, glucose and chocolate) and slow release energy (banana!) and choosing which one is best at what time. Also don’t forget Vitamin C which can be missed in ‘easy’ food.


References:-
1/ http://www.beyondveg.com/billings-t/comp-anat/comp-anat-4a.shtml
2/ http://www.sciencedirect.com/science/article/pii/S0960896601002747
3/ http://en.wikipedia.org/wiki/Creatinecf ref 42: Rae C, Digney AL, McEwan SR, Bates TC (October 2003)
4/ http://ods.od.nih.gov/factsheets/Carnitine-HealthProfessional/
5/ http://en.wikipedia.org/wiki/Creatinecf ref 20: http://www.efsa.europa.eu/EFSA/efsa_locale-1178620753824_1178620761727.htm

Dan

Non-profit: New beginnings and fresh perspectives.

POS COMPUTER TERMINAL IN SHOP

I am currently the newest member of the Dragonmobility team.

I have had a number of jobs in my professional career. I interned for a graphic design company, I managed a department in a grocery store, I worked in high street retail and as a sales rep for a big international company. What do all those businesses have in common? Not much, I assure you, apart from the fact that the ultimate goal for them all is making as much profit as possible. Which is definitely not a bad thing, it’s just the way it is.

This little intro should give you an idea of the change that I faced when I joined a social enterprise like Dragonmobility. Some of you may not be familiar with the difference between a social enterprise and a charity, so let me give you a quick explanation: a charity relies mainly on donations and public funding to exist and function, while a social enterprise produces its own revenue to sustain itself while giving a positive contribution to society. And the positive contribution to society happens to be the core of the organisation, not a byproduct of its activities.

Studying marketing at university I have been taught that the customer is always central. I learned that if your business is not providing the right solutions for your customers, you need to change and adapt and give them what they really need. Unfortunately, working with real people for real people, I learned that is not always put into practice. So in every place I worked there has always been a sort of compromise, always having the customer in mind but focusing mostly on the business and its profits first. So it’s no wonder that I felt the change here at Dragonmobility, where the customer is at the core of what everyone in the company does. And I mean literally at the core: every powerchair produced here is tailored to fit the different needs of each customer. Providing people with what they need and not what the management of your big corporation tells you to sell them is quite refreshing.

So, here I am re-discovering a moral and ethical pleasure in working, something I struggled to feel in the other jobs I had in the past. Anyone out there that has ever worked for a cause will know what I am talking about. It is all about knowing, deep inside you, that what you are doing is positively meaningful. I do not feel bad going to work every morning anymore! Don’t get me wrong, in any job there are barriers and issues to overcome, but that is something that will always be there, what truly matters is your attitude and how you choose to face those problems.

Anyway, I am really happy to have been given the opportunity to work here. So, here’s a piece of advice: get involved, do things and make sure you consider all the ways in which work can be rewarding, not just the monetary ones. It will make you happy in ways you won’t believe until you try it.

Francesco

Some things to remember when: Fundraising.

Fundraising

Fundraising is a lot of things, some of which are obvious, some of which aren’t.. some even seem like they’re obvious but are actually very easy to lose sight of.

Not only are projects carried out for a wide range of purposes, but they’re also, of course, carried out by a wide range of people. Often, the only thing that unites these individuals is that they’ve never done anything remotely like it before.

Over the last two years I’ve guided people through this, and while I started as clueless as the next guy, there are now some things I’ve noticed are always true and I think they bear remembering:

IT’S HARD

Whether you’re fundraising for a powerchair, cutting-edge treatments or the capital to launch a new product, it’s hard. It’s exhausting, emotional and takes far longer than anyone wants. What’s more is that, most of the time, no one wants to be doing it in the first place: very few people (and those who do deserve all the credit in the world) wake up in the morning and fancy a relaxing day of cash generation.

We do it because we need to do it.

The point to take away is that no matter how low the lows, keep that good end in mind.

IT’S FUN

For all the doom and gloom of the lows, as all the Race for Life adverts splashed across the TV tell us, there are most definitely highs. These highs don’t just come after you’ve finished a race, though. They’re everywhere and will be different in every project. They’re the cake at a bake sale, the sunshine at a charity picnic… I even once heard of fancy dress yoga. For the boring people like me, they’re even the satisfaction of sending off a particularly well formed grant application.

Sickeningly clichéd as it sounds, for all your focus on the good of the destination, don’t forget to enjoy the journey.

bakesale

IT’S VARIABLE

I often get asked how long fundraising for a powerchair might take. People sometimes struggle to believe that the answer to that question really is anything from a month to a year or maybe even more. The truth is, with any major project, there are just so many variables: where in the country is it happening, is it for an individual or an organisation, how big is the organisation, how old is the person. The list just goes on and on.

So, while obviously you should take inspiration, don’t judge yourself too harshly against other projects. Everyone and everything is different.

IT’S UNFAIR

For me personally, fundraising projects tend to arise when a family has a new addition and that new addition happens to have been born with some trait that limits their mobility. In other words, most of the time, it is purely the gods of chance which means it is these families that have the admin of a major fundraising project on their shoulders rather than others. The unfair forces of the universe don’t stop there, though: It will tip it down on the day of your big fundraiser, you’ll apply to a major charity the day after they commit their final bit of funding for the year and your car will definitely break down on the way to an important meeting.

Image result for rainy fayre

It’s important to know, though, that for every stroke of bad luck they’ll be some good news round the corner. And, if nothing else, think of how much misfortune you’ll have gotten out of your system by the time the project’s over!

IT’S REWARDING

This is perhaps the most important point of them all, and the most talked about. There’s not too much I can add here other than by saying, even as someone who’s only linked through work to the beneficiaries of my small fundraising efforts, it is, without a shadow of a doubt one of the best bits of my job.

I’m jealous of the people in our organisation who get more of it and feel bad for those who have less of it.

IT ENDS

As you start, no matter how far in the distance the end may seem, remember the moment of triumph does come eventually. Whether you want to celebrate with champagne or just a deep breath out, you should take the time to be proud of what you’ve done.

After all, the world is a better place because you’ve done it.

Seth

Parents who Pioneer

Interior room with a cot in retro style

In this post, I want to tell you about a little boy born with a disability to pioneering parents.

His parents had started their family fairly late – his mother was an artist who had studied at various impressive art schools, and his father had been an overseas journalist before returning to the UK to ‘get a proper job’. Their little boy arrived after a long and difficult labour, and he was born with a dangerous congenital condition which, without surgery, would mean he couldn’t survive. At six weeks old, they fought to get him the latest surgery to save his tiny life.

When it later became apparent that he also had an unrelated long-term disability, the medics and experts recommended that he should be placed in specialist care and that the couple could then go and have another baby who wouldn’t be disabled. His parents told the experts what to do with their advice!! There were disagreements amongst the wider family about what was best.

His mother took him to a ground-breaking therapist practicing near their home in London, his father included him in all family activities and bought him the kind of bicycle that he could ride, his grandmother contacted a school which would take him and integrate him with non-disabled children. They joined with other families of children with this same disability and formed the first parents’ support charity for the condition.

Sounds familiar, right? Sounds modern and newsworthy?

He was born in 1938. The surgery was basic by current standards and only available if you paid. The disability was cerebral palsy. The therapist was Berta Bobath. The support group is what we now know as Scope. He is my uncle, now approaching his 79th birthday – those battling parents were my grandparents. He is now retired, living independently in sheltered accommodation. He receives his occupational pension and thinks back on his life with joy.

And here is what I know from seeing it from the other end of the story:

•Parents will always fight for their child to get them the most up-to-date, and best, solutions.

•Grandparents have always been an important part of the armoury, for both wisdom and energy.

•Professionals will always offer the habitual solutions for problems they haven’t yet solved.

And here is what I’ve learned:

• A few people will always think outside the box, and they will band together to change the world.

•Integration lasts a lifetime.

•Things can always be better.

Ruth

What does your colour choice say about you?

3Bootlids
A selection of SnapDragon and Dragon mudwings

For many of us, trying to choose a colour for a product can be a rather agonising process. This is especially true for a Dragon, as we offer a practically unlimited colour choice. Then again, for some people it’s exceptionally straightforward. We all know that one person who refuses to buy anything that’s not the same garish colour as their favorite croquet team or some sort. “Too clashy?” “Too chintzy?” “Too monochrome?” are all insignificant trivialities for these colour monogamists. Even if you’re not one of these chroma loyalists, most likely you do have a favorite colour. The Dragonmobility office is no exception: we range from Dan’s rather somber maroon to Gerry’s ‘brightest’ orange. But do these choices reveal anything about us, and if so, what?

FavCols
The Dragonmobility Team’s Favourite Colours. Can you guess who’s who?

As with most things, we can turn to our favourite online deity. ‘Psychology Today’, proclaims (seemingly with zero external sources) that; “People who choose black as their favourite colour are often artistic and sensitive” and “those who love red live life to the fullest and are tenacious.” Let’s just say I’m unconvinced.

However, colour undoubtedly plays a huge part in our everyday lives. It impacts us all, at a subconscious level. Studies have proven that, for instance, we discern the flavour of food and drink based on their colour. In one such study, even when participants were explicitly informed that the colour of the solutions provided had no useful information regarding the flavour of the drink, they were unable to ignore the colour and accurately identify the taste (Zampini et al, 2007). It’s certain that we associate colours with flavours, but is it possible that we associate colours with thoughts and feelings as well?

colorful foods
We closely associate colour with food. Via foodinsight.org

Well the short answer is yes, we do. Colours have been shown to evoke clear emotional responses (Boyatzis and Varghese, 1994). For example, children, in particular have been shown to respond with positive emotions to bright colours. In the same study boys were shown to be far more likely to respond positively to dark colours than girls.

When adult colour preference is modeled through the application of a ‘mean hue preference curve’ (just roll with it), we can begin to interpret common colour inclinations. The model shows that average female preferences raises steeply to a sustained peak in a ‘reddish-purple region, while the male preference is shifted towards blue-green (Hurlbert et al, 2007). No doubt our culture construct of gender specific colours plays its part in this.

However, these studies, interesting as they are, are limited in their usefulness. This data is used extensively in many design fields. The aim being to use colour in order get consumers to relate to a product in a certain way. For example, companies will use silver/grey colour schemes to identify with balance and calmness. What the results don’t do is provide any link between individual personalities and colour preference. In fact, no academic source seems to be able to do so.

Colour preference has been shown to be independent of age, demographic and education (Sliburyte and Skeryte, 2014). At the end of the day, the only thing we can say with any certainty is that people like colours strongly associated with things they like (Palmer and Schloss, 2010). In this sense our uber croquet fan’s colour virtue should be applauded: they follow what makes them happy. I’m not going to lie: there would have been a time, as a product designer, where I would have been mortified by the suggestion that I change a carefully chosen colour scheme. Since joining Dragon though, I’ve found it hard not to celebrate each and every dragon that leaves our shop floor. Colour preferences make us who we are. At the end of the day our favourite colour is just that, it’s something that brings us joy. That’s why we should cherish them and that’s why we let you pick them.

Angus

Zampini M, Sanabria D, Phillips N, Spence C. (2007) The multisensory perception of flavor: assessing the influence of color cues on flavor discrimination responses. Food Qual Prefer;18:975–84

Boyatzis, C. J., & Varghese, R. (1994). Children’s emotional associations with colors. The Journal of genetic psychology, 155(1), 77-85.

Hurlbert, A. C., & Ling, Y. (2007). Biological components of sex differences in color preference. Current Biology, 17(16), R623-R625.

Sliburyte, L., & Skeryte, I. (2014). What we know about consumers’ color perception. Procedia-Social and Behavioral Sciences, 156, 468-472.

Palmer, S. E., & Schloss, K. B. (2010). An ecological valence theory of human color preference. Proceedings of the National Academy of Sciences, 107(19), 8877-8882.

Premature thoughts on Fatherhood…

happy family father and child on meadow with a kite

A few weeks ago me and a few friends (all of us 24 year old men without kids) were talking about children. Specifically about whether and when we might want them. This was all going pretty much as expected: the broad points of view, from the broody to the depressingly distant, were all represented. That is until I surprised the floor by announcing that my attitude on the subject was softening.

To those who know me, the fact that this elicited a raised eyebrow will come as no great shock. While I’ve never been as fervently anti-child-rearing as some others my age, it’s fair to say that it’s never been a high priority of mine. So, their surprise was something I was expecting. What did catch me off-guard was their shock at my reasoning.

“Well, at my work you kind of end up meeting a lot of cute kids” I said, trying to de-raise some of those eyebrows.

“At work?” one of them asked with a hint of puzzlement.

“Aren’t most of the kids at your work ….” the other ventured, trailing off finding himself unable to use the word ‘disabled’.

Is disability in children really so unthinkable that the idea of being around disabled kids making someone slightly broody enough to stop a conversation in it’s tracks?

I should say in defense of my friends that they’re both lovely, caring and compassionate people. Just people who’ve been so flooded with stories of ‘inspirational’ families heartbroken at their stricken child that they can’t see what I see.

I’m lucky that in my work once in a while I get to see a child take their first steps (on wheels), I’ve seen the very communicative bond that develops when a parent has to arrange a kid’s legs in order to sit on the sofa, I’ve seen kids so comfortable in themselves that not being able to control their own limbs is a hilarious game, I’ve seen just how bright having to contend with the laws of physics can make someone.

To me then, it seems completely natural that being around these kids would, at the very least, make me reconsider my position on having children.

The conversation continued.

Having seen all these things, there are moments when I find myself thinking that (if I do want kids), not only has knowing these disabled children made me a little broodier, I don’t actually mind the idea of having a disabled kid myself.

“You can’t say that!” a friend exclaimed, seeming to think I’d wished some curse on the as yet unborn.

Now, I appreciate the naivety of my position and I don’t mean for a second to talk down the challenges that I know families with disabled children face, but I couldn’t help being a little annoyed at just how negatively they view it.

They didn’t understand.

What frustrated me was they only seemed to take the negatives: initially they didn’t believe me that in many ways it’s just like raising any child. I conceded that there are differences, but they would only believe that these were harrowing burdens. In trying to convince them that there were pros as well as cons I may as well have been trying to convince them that up was down.

Am I really so bizarre in thinking that it really wouldn’t be the end of the world to watch my child take their first steps in a wheelchair? Have I massively missed the point of all I’ve seen over my two years doing what I do?

In any case, for now this is all academic and, I’m aware, horribly self-indulgent. For now I’ll stay quiet in the knowledge that if/when the time does come, for all the things I’ll be woefully unprepared for, there’s at least one thing I’ll go into parenthood on the lookout for. And, If you’ll forgive the daydream, I’ll muse on shocking a doctor by responding to a child of mine “needing wheels” with a calm “cool”.

Seth

Daddy’s Home

PigeonChase

Some years ago, just after I had presented an academic paper on early mobility at an international symposium, a well-respected researcher accosted me, wide-eyed and excited: “Where did you get all that data about disabled children’s development?”. I had to tactfully admit that, as disabled children are also human children, the key source for a lot of my paper’s data had been my GCSE Child Development textbook…

For a girl heading for a career in corporate finance law, and with the (still not quite abandoned) intention of getting an MBA, a GCSE in Child Development was not the obvious choice. But in the work I do now it has been more useful to me than the second foreign language, or the triple science award, could ever have been.

Possibly because I was myself a child in powered mobility, I have been able to see past the novelty of a toddler in control of a chair (“Babies Drive Robots” is my favourite tabloid-esque, clickbait headline). Instead I can connect the mobility with the normal developmental milestones that every child needs to access.

As well as the infinite variety of small behaviours that a toddler can and must go through for their development such as (to name but a few):

  • Pulling pans out from the kitchen cupboard (hand-eye coordination, understanding sound, the beginnings of engaging in family tasks);
  • Touching the radiator, and learning not to touch it (sensory development, discipline, cause and effect);
  • Posting the gas bill down the back of the fridge (fine motor skills, shape, responsibility),

there are a few major and significant landmarks in development which indicate that a child is grappling with, and mastering, big intellectual leaps.

My favourite of these, at first glance sounds fairly minor, but it’s huge! It is going to the window to wait for someone who is expected. Often it will be Daddy coming home from work. Think about it from the mind of a little person who is figuring out how the world works…

First of all, our toddler has comprehended that Daddy exists even when we cannot see him. You, an adult, think this is a given; but it was news to you once, too! Earlier in brain development, a baby only believes in people they can see. Once we’ve grasped the new concept, we consolidate it by acting on it.

By trying out the ‘Daddy is somewhere else’ hypothesis, this little brain can build on it to reach the conclusion that ‘somewhere else’ is connected to where we are now. Daddy will come into view on the driveway before he comes through the front door. First, our toddler supposes that the space outside the window is always connected to the space inside. Daddy always comes around the same corner, so the next piece of the jigsaw is that wherever he comes from is always attached where we cannot see. Now the imagination can conjure a ‘somewhere else’ place, even though we have never seen it. We’re getting truly existential here, but these are all concepts that adults know and use, that they didn’t have when they were born.

Next: outside and inside are separated by the window, and we can see through the window even though when we touch it it feels solid. When you haven’t seen the phenomenon before, transparent things are weird. Try it now – look through a window. Everything looks the same but different, right? You, who have been looking through windows your whole life, can tell the difference. Before you were two years old, you worked this out.

And here’s another thing that you now take as given, that you once learned: the progress of time. Our toddler has wanted Daddy to come home since breakfast-time. We have been to play at Tiny Toes, napped, had lunch, been to the shops, picked up the older kids from school, but it’s not until after we’ve watched Furchester and eaten tea that it is worth looking out for Daddy. He will be home before bedtime. After, before, since, until, breakfast-time, bedtime – these are concepts that we learn to understand through experience.

Going to look out of the window is not just the indicator that your toddler has reached all these cognitive milestones – it is how they consolidate the thought processes. And tiny humans, even the disabled ones, learn like every other human. “Tell me, I forget, show me, I remember, involve me, I understand.”

The Start of It All

learning

It’s mid April in 1981. We have two children, a daughter who is seventeen months old and a son of four months. Lou and I are really happy, the children are our pride and joy and my work as a consulting design engineer is going well. Our only worry, that the girl was pushing herself up but has stopped doing so, is being checked out by a doctor. He has told us not to be concerned while he investigates what could be happening … “it’s probably OK”. The door bell rings and the doctor is there. He says he was visiting the hospital round the corner from us and had some news so he thought he’d drop by. A consultant. Making a home visit on spec. We ask him in … too polite to be scared yet.

Tea is made and the doctor spends two hours very gently explaining that the news he has is not good but, despite appearances to the contrary, the sky has not just fallen in. He names what he thinks it is not … Werdnig Hoffman Syndrome … “but don’t look it up because I’m almost certainly wrong”. Looking it up means going round to a library, no internet, so harder to do than nowadays.

It was good advice, the eventual diagnosis, Intermediate Spinal Muscular Atrophy, is also hereditary but less lethal.

Still drinking tea, still chatting, and he says “she’s going to need wheels”. He can’t remember saying it but he did; I know, it’s a major thing in my life and I was there. So now I’m a practising design engineer trying to find the thing which will help my daughter … I expect to find it, the thing that some other dad has made to help his kid so that I can help mine.

It’s not there.

I’m really angry. “Why can I not buy a wheelchair for an eighteen month old child? … because they couldn’t drive it! … Why could they not drive it? … Because they’re only eighteen months old! … Has anybody ever tried it to see if they could? … No! … Why not? … Because they’re only eighteen months old! … WTF?”

So now I’m a design engineer who’s angry and can’t buy the thing his daughter really needs. What next? So I build the machine which got christened ‘The Yellow Peril’ after the nick-name for smoked haddock in our family … Ruth, our daughter, had insisted it should be painted yellow. She learned to drive it in a few weeks which pleased the large number of my engineering friends who had been hugely helpful in getting it designed and built (CCL I can not thank you enough, nor Rog, Paul, Steve, Roger, Alan, Dave, and many, many others for their input and encouragement). I should also mention that the prototype was built and Ruth started to drive it by mid August of that year … didn’t get painted for a bit, though. I might also say that they were taking bets as to just when I would be admitted to the local mental hospital … I may have become a little single minded!

Then I was going to build a red one.

Sam, Ruth’s brother, had driven the Yellow Peril once … I know, I have film of him doing it. He did ‘Round and Round Backwards’ really rather well. I never got to make it for him though as he fell foul of one of the things which can get you when you have SMA, a sudden chest complaint which turned into pneumonia and stopped him … it took one day.

So now I’m an angry design engineer and there’s other kids who can’t get the thing they really need. What am I supposed to do next?

Dan

Life in a family business… with the wrong second name.

FamilyPhoto
The Everard Family… or some of the Board plus Alice depending on your perspective.

 

18 months ago I joined a Family Business. For those who aren’t familiar with Dragonmobility, I joined one of the most ‘family’ family businesses there is. It’s warm, friendly, intimate… and most importantly, more than a little idiosyncratic. While I could go on for pages and pages about Dragon – it’s dynamics and characters – I think I can make far more use of myself sharing my general experiences of the joys (and some of the pitfalls!) of working in the unique environment that is family business.

Why You Should

Genetic Telepathy

I didn’t know at the time, but when I was interviewed it was by a mother and a daughter. For the first 15 minutes they hid it well: calling each-other by first names, referring to demarcation lines between their roles and blessed with an overall professionalism. Quickly, though, it became clear that there was something else at play. There was an eerie level of joined up thinking. There was an ease and clarity to everything, which I now know comes from a literal life time of sharing ideas together. It was only at this point (clever me!) that I started to notice the physical similarities in the people sat across the table from me. This is something I’ve continued to find at every level. You would be hard pressed to find strategic discord at Dragon.

Life Under A Wing

It should be made clear that in a true Family Business family/company cohesion never ever feels exclusive. Here, never do the staff sit around complaining of how we’ve been shut out of decisions taken over a dinner table. And that’s because pains are taken to welcome each and every one of us into the fold. Without meaning to sound saccharine, whether it is through dinner with the chairman and his wife or gossiping with the sister who’s unexpectedly dropped by, we’ve all been given our place in the family. This adds an extra level to all aspects of company life: professional development becomes more important, HR becomes more compassionate and respect stops being a line on the company’s mission statement and starts just being part of life. This is a huge part of what makes working in a Family Business so special.

The Frankness

It’s no secret, though, that families have arguments. However, I would challenge anyone to find a disagreement between a Chairman and a Managing Director that can be resolved as quickly (or as suddenly loudly!) as when the pair are father and daughter!

Things to look out for

I’ve got my own dad!

No matter how many times you tell people, or no matter how glaring the lack of physical resemblance, people are going to mistake you for one one of the family. Get ready for a lot of “Oh God, I thought you were so-and-sos son/daughter”, “Is your dad around?” and “So are you the youngest?”. Flattering as these comments are, you’ll soon get tired of telling people you have your own set of parents who work in entirely unrelated fields.

Your Daughter’s driving me mad

Once upon a time I sheepishly and tentatively broached a very Family Business issue with my boss. How, I asked myself, do I tell her I’m slightly annoyed at the Technical Director when he’s her dad? To my relief she laughed and said “Try complaining to your dad about your Sales and Marketing Director when she’s his wife”.

Tragedy equals tragedy cubed.

At any company it’s awful when a director’s brother is sick. While the human side of any story like this is obviously the most important, it goes without saying that a company will suffer three times as much when the brother is another director’s uncle and another’s brother in-law. This can be something that’s tricky for staff to navigate: do you carry on regardless or do you go risk grinding day-to-day running to halt.

All said and done, if you get the chance to be a part of one of these unique organizations, take it. Put in the most simple terms possible, it has more benefits than costs. Even the costs are endearing in their own way and you’ll quickly find yourself letting them slide. In other words, no one minds spending when you’re spending on family.

 

Seth