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Ben can cycle!

/ jess / 1 Comment

Milestones are a tricky thing for parents and children like us and Ben. Many of the obvious ones from early childhood never materialised and perhaps some never will. If they do, they will be the result of years of hard work on Ben’s part, considerable therapy input and a lot of patience. This is why we start to talk about ‘inchstones’ (as I have done here) which are no less valuable than the typical milestones. Inchstones recognise the scale of greys that we operate in; Ben can’t sit on his own but has worked up from always being held to being able to sit unsupported for two minutes. In our world, this is brilliant progress.

So there we are, pottering along, Ben working really hard on every aspect of his life, accumulating the inchstones. James and I are a bit distracted by the birth of Molly. It’s mid-winter (albeit one of the mildest winters on record) so Ben hasn’t been going out on his trike that much but we have been trying on the weekends when it isn’t raining…

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And then…

He is off! Riding his trike on his own! An unequivocal milestone! Starting with the odd couple of independent cycles with his legs, building up within minutes to confidently pedalling his legs round and round, spinning in circles. I wasn’t there to start with but James sent me jubilant videos by phone and by the time Molly and I got there Ben was happily cycling around the basketball court. We were all so happy it’s tricky to find a video that doesn’t have someone shrieking in it (I’ve muted the sound to save our blushes) but no-one was more excited than Ben himself.

It’s fantastic.

Because cycling is fun.

Because cycling is what six year olds do.

Because it’s Ben being able to move from one place to another entirely under his own steam which he hardly ever does (he can walk in his walker a bit but it takes a lot of effort and is therefore a bit inconsistent).

Because learning to ride a bike is a bona fide milestone (granted Ben can’t yet steer himself but let’s not quibble over technicalities).

Because Max also learnt to ride his bike in the same week and it’s lovely for brothers to do things together.

Because, above all else, Ben was proud of himself and that is a beautiful thing.

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Just in case it’s a while before another milestone comes along, I’m going to dissect a little how this one came about:

Patience and persistence

We have now had the trike for 15 months. We don’t use it every day but most weeks we have pushed Ben in the trike with his legs getting used to going round. I wrote a blog in April last year about Ben starting to cycle himself but it’s not until now that it’s happened reliably. These things take as long as they take. We must be patient and give Ben the chance to learn and develop the skills – it’s no use expecting things to happen quickly and, equally, just because he hasn’t done something (be it cycling, or learning letters, or using an eyegaze computer) within the arbitrary timescale imposed by some adults, doesn’t mean it won’t happen eventually.

Opportunity

As I wrote about here, we bought the trike privately as there is no statutory funding for such equipment and it was really expensive. Ben therefore had the opportunity to learn how to cycle, little and often, over time with no pressure. Kids like Ben have to be given access to equipment and activities even though things like trikes cost over ten times more than a normal child bike.

Enthusiasm

James and I are pretty good at taking Ben out in the trike but probably the thing that tipped the balance in favour of success was his new nanny/carer. She was with James and Ben the day that he nailed it and was coming to it with a level of enthusiasm which we had probably lost over the last 15 months. Ben really likes her and she was encouraging him to pedal on his own having given him a little push, and off he went. Maybe if James and I had been doing the same old pushing we wouldn’t have realised he was ready to do it on his own. It’s perhaps an obvious point but enthusiastic, skilled carers contribute hugely to Ben’s life.

Self-confidence

Because Ben is so dependent on others to help him with every aspect of his life, it is rare that he can do things on his own or that he can take full credit for them. I love that he was so pleased with himself for cycling, and that all of his patience and determination over the last year has been rewarded. When he went to school after the weekend we recorded a message about it on his communication button and sent video links to his teacher so his whole class watched him cycling. His teacher said he was thrilled when they discussed it and the idea of him sharing his huge achievement with his friends with a big smile on his face makes me feel all warm and fuzzy. The boy deserves a bit of self-esteem.

Siblings

Max learnt to really cycle his pedal bike the day before Ben’s achievement – he had been getting close for a while but required a hand on the back of his neck at all times which limited progress somewhat. It may be coincidence that the boys did it together, but probably not. They really keep an eye on each other and the interaction between them is great for them both – Max wants to do what Ben does and learn what he learns, Ben is encouraged to try games and activities that he wouldn’t tolerate at all if Max wasn’t around. This is the latest in a long list of examples of why having siblings is brilliant for them both.

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Brain surgery

It’s possible that some of this physical progress is down to the stimulators in Ben’s brain. The jury’s out at the moment – let’s wait and see how the rest of the year goes.

So hooray for big orange trikes and small persistent boys.

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Appreciating good doctors

/ jess / 1 Comment

Our family, and Ben in particular, are pretty intense users of the NHS. I breezed through my twenties with barely a GP appointment but in the last six years we have been really getting to know the people and processes that make up our national health service.

In the last three months Ben has had brain surgery followed by eight days in two different hospitals. In that time, he has also had six outpatient hospital appointments (one of which lasted 3.5 hours and involved three different professionals), one appointment with our community paediatrician, two orthotics appointments and one visit to the wheelchair service. That doesn’t include his frequent contact with physios, occupational therapists and speech and language therapists at school.

Making our lives the best they can be relies on building relationships with good doctors and therapists, and when the NHS works well it works really bloody well. This was really been demonstrated last week.

(Photo of Ben in a hospital waiting area. Every time we go he stares avidly at this explanation of wind speed measurement until we read it to him.)

On Tuesday we went to a clinic we had never been to before, where Ben was seen by a consultant paediatrician, a specialist speech and language therapist and a specialist technologist in order to look at the way he communicates. Before we even got there, the team had already made contact with our community paediatrician, three different speech and language therapists who have worked with Ben, and asked us to fill out a questionnaire. Ben’s school speech and language therapist came to the appointment with us, and after hours of working with Ben and much chat, everyone concluded that they needed to spend more time with him. So all of those professionals will visit Ben at school in the coming weeks and months and then we will meet again.

Later in the week we saw Ben’s neurologist, let’s call him Dr D, who we have now known for the entirety of Ben’s life. Following a discussion about Ben’s brain stimulator, he called the neurologist who fitted Ben’s stimulator (at a different hospital) to check he would see us at another appointment next week. We then ran through all of the major aspects of Ben’s life, discussing progress and options, and he warned us (in a friendly way) not to underestimate Ben’s intelligence.

The same night, at 6.30pm, I got a phone call from our GP regarding recent problems with Ben’s medication. After discovering that there is a national shortage of one of the medicines that Ben takes daily, he had called the hospital pharmacy and one of Ben’s neurologists, and had worked out a way of us getting the medicine in the short term until the normal supply is resumed. He had made about six phone-calls on Ben’s behalf, to find a solution, and only called me when he had fixed it.

I would like to take a moment to give some advice to anyone who finds themselves in a situation similar to ours, who sees as many doctors as we do. Our GP practice is the one that Ben was registered with when he was born. It has not been the closest surgery to our house for several years but I took a view that I would rather have the consistency of a practice I knew and doctors I respect than move to a more geographically convenient surgery. Of course I get frustrated with their phones being engaged and with nurses who won’t give Ben the flu spray, but these niggles are far outweighed by having access to a good GP who knows Ben and the rest of us.

Similarly, Dr D is based in our local hospital where the outpatients’ clinic is always too hot and there’s nowhere to change Ben. There is another hospital a bit further away, that has a fancy new children’s hospital building, excellent changing facilities for disabled children and a Marks & Spencers Food shop.

It has been suggested to us that we should move neurology consultants and have everything at the other hospital, but I can’t quite tell whether this is because they think the doctors are genuinely better at the swankier hospital or because they have been seduced by the surroundings. Either way I see no reason for us to move – Dr D is excellent, knows Ben, knows Max, knows us, and calls doctors in the other hospital on his mobile to talk about Ben if he needs to. Most importantly, we like him and, as far as I can tell, he likes us. So we’re sticking with him for the time being, and if that means buying a limp ham sandwich for lunch rather than having the option of M&S sushi, then so be it. If you find a doctor you respect, stick with them.

I haven’t familiarised myself with the recent specific arguments between the Secretary of State for Health and junior doctors, largely because I’ve been spending a lot of time sitting in hospitals. But it is worth taking some time to appreciate the level of commitment and expertise of the doctors (senior and junior) involved in Ben’s care, how hard they work to solve problems, how late they stay to resolve medication issues, and how very nice they all are about it.