Footnotes – An Update.

A while ago I wrote about the problem Freddie has with his ankles as a result of a combination of hypotonia (low muscle tone) and hyper mobility (extreme ‘double jointedness’).

Freddie exhibits something called ‘pronation’ or, since pronation itself is a normal, but brief, phase in each footstep, I should say ‘over-pronation’. Over-pronation is where the foot rolls inwards all the time, so that a person appears to be walking on their instep; the toes, however, point outwards, at what I call the ‘ten-to-two’ position. Right, brace yourselves, here comes the science bit:
Tendons are the flexible, but inelastic, cords of strong collagen tissue that attach muscles to bones. During movement, the muscles pull on the tendons. People with DS seem to have a genetic disposition towards a defect in the gene for tendon development, leading to a greater than usual elasticity of the tendons. This means that the tendons stretch when the muscles pull on them, reducing the effectiveness of the movement produced. Pronation (or over-pronation) is one of the most common signs of this in individuals with DS.

Freddie’s degree of pronation has always been quite pronounced — from certain angles it can look as though he is almost walking on his ankles. For that reason, as soon as he started to stand the physiotherapist referred him to the orthotists so that he could be prescribed orthotic shoes: rigid, high-top boots designed to improve the position of the foot whilst they are being worn, to reduce the likelihood of injury when walking. In Freddie’s case the orthotist also prescribed special insoles too.

On this visit, the ‘foot lady’ turned out to be a ‘foot man’. After examining Freddie’s boots, and the little feet that had been in them, he told Daddy that he must make an appointment for Freddie to see the GP as soon as possible, as he needed to be referred to an Orthopaedic Consultant. The pronation is now so severe that the boots are no longer able to hold his feet in the correct position; instead, Freddie’s feet twist inside the boots and actually deform them, rigid though they are. In turn this unnatural foot position causes rotation of the internal structures of knee and hip, which could lead in time to knee problems, lower back pain and difficulty in walking. More vigorous treatment of the problem is required. He may need surgery.

This came as quite a shock, as no one has ever even hinted that this may be a possibility in the long run. Orthopaedic consultant? It’s never been mentioned before. As far as we knew boots and insoles were the be-all and end-all.

I hate the idea of putting my little man through an operation, but I hate even more the idea of him not being able to lead a full and active life due to pain and debility, so, if surgery is the only way, so be it. I’m hoping they will be able to try splints first, although I don’t much fancy the palpitation-inducing wrestling match it will take to get them on every morning. Still, it will save me having to go for a work-out.

Well, we saw the Orthopaedic Consultant during the summer holidays, and, while she didn’t rule out the possibility of surgery at some point in the future, she said that splints should be tried first, and referred us back to the Orthotics Department, who would be responsible for making and overseeing the use of them.

So today I took Freddie to have casts of his legs taken that would be used to mould the splints to fit. Knowing that I would have to keep him still while the plaster was applied and left to harden, but not knowing how long this would take, I went prepared – iPad, DVD player (incase the iPad didn’t work), books, snacks, drinks and stickers, and the buggy (to help keep him ‘restrained’).

The Orthotist we saw today was not the one who initially referred us to the Orthopaedic Consultant. He had clearly read Freddie’s notes, though. But when he said “So, I’m supposed to be casting you for splints today”, there was something in his manner that suggested this wasn’t going to happen.

He removed Freddie’s shoes and socks, and proceeded to examine his feet and ankles very thoroughly, flexing them this way and that way, and looking at them intently. Then he explained, in great depth, why, in his experience, splints were likely to cause Freddie more problems than they would solve. What he said made perfect sense, especially When he demonstrated on Freddie’s foot. I queried why no one had explained this to us before, and he said if Freddie were an exam question on the forces required to correct his foot position, and how you would achieve this, splints would be the textbook answer. But it’s all very well a surgeon saying “the foot can  be moved into the correct position,  so we’ll put him in splints”, when they won’t see the side effects of the splints in practice, in his case.

He explained that the tendons on the outer side of his feet were so shortened and tight when the foot was pulled into the correct position that they were protruding over the top of the bone: in his experience, he said, the rigid plastic would be pressing directly on them, and likely to cause tendonitis. In addition, a rigid splint would put such pressure on certain points of his foot that it would cause the skin to break down. He pointed out that even when he held Freddie’s foot in the soft of his hand, in the same position it would be in the splint, Freddie was unhappy; he complained that it hurt. Splints would really slow him down, make him reluctant to walk, even.

He recommended first trying device that fits inside the shoe like an insole, but offering more aggressive support, though not as harsh as the splint would be. He couldn’t guarantee anything, though he’d had good results in the past, and if it did nothing else, it would give us an idea how his kin and tendons would react to additional pressure.

Freddie was an absolute star – very patient with all the fiddling about, even  when his feet had to be forced into a position that hurt. So, we’re back to Piedro boots for now, but Freddie’s not bothered, and he can run about quite happily, which is what matters.

 

Advertisements

A World Without Down’s. 

BBC 2 Oct. 5th 9pm. A World without Down’s: Fronted by Sally Phillips of ‘Miranda’, and ‘Bridget Jones’ fame, this is a documentary about Down’s Syndrome and the ethics of pregnancy screening. Sally has a son with Down’s Syndrome, and she has selflessly and bravely opened her private family life to the cameras, and public scrutiny, in order to bring the thorny issues raised by the new prenatal screening test.And yes, it really is a brave and selfless thing to do. She isn’t doing it for publicity for herself, or for sympathy, motives which some might meanly ascribe to a celebrity who goes out on a limb like this; she is doing it for the benefit of families like mine, who do not have a voice. So far, our concerns about the new tests have been swept under the carpet by the medical profession, the policy makers, and the companies behind the development and marketing of the test. She has made the programme to bring these issues to public attention, knowing that people who wouldn’t normally be in the least interested in Down’s Syndrome will watch just out of prurient curiosity, to have a nosey at her life with a critical eye. In this way she hopes to spark public debate and discussion of an issue that is largely hidden at the moment. She has done this knowing that she will, in all likelihood be on the receiving end of criticism and even wanton unkindness for her trouble. She is going out of her way to ‘take one for the team’. This lovely lady has given us all many laughs, and now she’s giving my family a voice. I cannot express my gratitude enough. Please watch: October 5th 9pm
http://www.bbc.co.uk/programmes/b07ycbj5

An All-Too-True Story…

I wanted to share with you the story of a lady called Boo Lowe, and her family. She and I both belong to a particular Facebook group, which is where I saw her story. It is shocking, but perhaps the most shocking thing is that it is not unique. Many members of the Down’s Syndrome community have faced similar pressures as expectant parents, from medics who seemed intent on steering them down what I call the ‘test and terminate’ route. And now we hear that behind the closed doors of a consultation committee, considering the roll-out of the new prenatal test, that the cost of testing every mother should be weighed against the potential cost to the NHS of providing healthcare for persons with Down’s Syndrome. So, the value of our children’s lives is to be measured, and not against that of another human being even, but against the price of an inanimate testing kit!

I have copied her words verbatim from the thread, so that there can be no misquoting or misunderstanding. This is her own story, in her own words. But, I repeat, her experience is not unique.

“… This is my story …To say I was thrilled to find out I was pregnant is an understatement of colossal proportion!I was 44 years old, in my second marriage with two teenage children from my first and had longed for this baby for a long time.

As a family, we were all very excited about the new journey we were on. We couldn’t wait to welcome this new life into our World and share new adventures with a new little person.

From the onset of the pregnancy, pretty much, I was sick daily. This was new for me and I remember saying how this felt different to my last two. I took it as a good sign that my hormones were high and even considered that I might be expecting twins or more!

At 12 weeks I was called for my first scan – the energy in the room shifted as the radiographer spent longer than normal without speaking and measuring the area at the back of the babies neck. I was so happy to see my little one, a little flickering heart, moving, wriggling, kicking, it took me longer than it should to pick up on the vibes. We were told that the nuchal fold measurement was bigger than normal – 5.8 instead of below 2. Not knowing what that meant or might indicate, we asked all the questions we could think of. Genetic disorder was the answer to all. Further testing, how old was I? Have a cup of tea, someone will see you in the other room, do you want the scan pictures? No, it’s ok; you don’t need to pay for them this time…we were given literature on amniocentesis and C.V.S. tests to determine what genetic disorder our baby may have. We were told that although Down syndrome, T21, was the most probable, the high nuchal fold measurement could also be an indication of Edwards syndrome, T18, or Pataus syndrome, T13. I asked if there were any other indications that something was wrong with our baby and no there wasn’t but we should really find out soon so we could decide the best course of action.

We drove home in silence, the first time of many journeys to come where we could find no words.

I spent more hours than I can remember googling all the ‘syndromes’ possible and the tests they had advised. I was in a fog but clung on to my little belly and prayed hard that my confusion and worry wasn’t somehow passing through my veins and into this little life.

The first phone call came the next day…we were invited to meet with a lady who would explain everything to us about testing, the possible results and what we could do about it. The meeting was horrific to me. I remember her describing all the negative issues associated with genetic disorders. T13 and T18 not being life viable and T21 having multiple life threatening, life shortening or life compromising issues that basically added up to it not being wise to continue with the pregnancy. We were told in incredible detail about how the baby would be removed from me. How a regular D & C was not possible after 12 weeks and what the procedure would be. I felt even more sick than usual and numb to all the information that I didn’t want or ask for. Such a dark picture was emerging in front of me. I was sinking at a time when I wanted to fly.

We discussed everything with the children and decided together that I would have the C.V.S. test so that we knew for sure which path we were on.

Before I had a chance to let them know of our decision another phone call with a sympathetic voice urging me to not delay in moving forward with this, the sooner the better.

I was in my bedroom on the morning of the day after the test when the phone rang again, it was the doctor who carried out the procedure, and she wanted to tell me the news herself. I’m sorry but the test is positive, Trisomy 21, Down syndrome. Long silence. I asked if she could tell me the sex of my baby, yes she could, it’s a girl. Thank you, I said. She told me I would be contacted soon to discuss everything properly but she would tell them to give me time to let the news sink in.

I remember, my first reaction was relief that it was Down syndrome and not any other genetic disorder they had described with even darker prognosis’s.

I sat on my bed and said out loud, “a girl” …then the tears. Of course there were tears, I mourned in all the ways we do when we mourn, with anger, confusion, desperation, the loss of the healthy baby we were supposed to have. I wanted it to be wrong but I also wanted my baby to know that I LOVED her so very much. I felt guilty, so so guilty that I had done this to her, it was my fault. But, with all of it I still felt an incredible bond to my baby girl. I apologized to her over and over, angry at myself for being sad and promising her that it would be ok.

Again we talked as a family and it was the strength of the children that cemented our final decision that same day. When we discussed termination with them they were 100%, absolutely, no way, not on their watch, adamant that that was not an option and I was so relieved and proud of them. This was their sister and that was that.

I want to say that in no way ever would I judge anyone’s choice in similar situations. It is not and will never be, my place to pass my opinions onto others but this was our decision, our life choice together.

It was the next day when we were called again. I told the person on the end of the phone that we had made the decision to continue with the pregnancy and I was asked if it would be ok to meet up so we could properly discuss everything. There we were told of the many medical issues Down syndrome can be associated with. Heart abnormalities, respiratory issues, increased chance of childhood leukemia, early onset dementia, hearing problems, vision problems… do we really want to have to face all of this? We were given the option again to terminate and told that it was relatively simple. Again we said that it was not our choice to do that.

More scans were booked in including special heart scans and each one showed no abnormalities but the calls kept coming.

Altogether, from 13 weeks to 24 weeks I received 9 phone calls, each one gently and not so gently urging me to look at the medical facts and perhaps think again about our decision. I was told about how the quality of life of my daughter would be not good; she would be a burden on the family, my other children. She may not be able to walk or talk, she may be deaf, blind, have thyroid issues.

It was a battle to fight off the negativity and a fight I am so glad I won. I feel so sorry for other mothers that are maybe not able to see through the darkness to where I am now.

My daughter is 4 years old, she does have an issue with her heart but no surgery is scheduled. She started at mainstream primary school last week. This morning when I dropped her off a little girl in her class came up to me and told me how she had been hugged lots in the playground yesterday by my daughter. I smiled and she said to me ‘ I love her already and we only just met’.

Please, Medical professionals, I beg you, understand that Down syndrome is not just what you see. You told me of darkness where there is so much light. You told me of sadness and there is so much joy. My daughter is a worthwhile member of society and already in her 4 years has changed the lifes of everyone who knows her and is capable of so much more than you let me know. I managed to shake of your negativity and look towards a positive future with my daughter forcefully guiding the way.”

This Value-for-Money life.

There is an article on the Daily Mail website today that has left me feeling rather disturbed. For once, it is not the opinions expressed within the article, nor those implicit in the language or phraseology of it that have caused my discomfort (though there were a couple of unfortunate references to ‘Down’s babies’). The article itself is perfectly reasonable, and gives a voice to the families of people with Down’s. What has disturbed me is the fact that it needed to be written. It begins with this headline:
‘You can’t put a price on a Down’s child’s life! Families’ fury as top doctors say lifetime cost of care to NHS justifies new simple blood test for mothers-to-be’
It then continues:
‘Senior doctors sparked fury yesterday for suggesting the NHS should work out the ‘cost effectiveness’ of caring for children with Down’s syndrome.’ 
Who has a crystal ball that can predict how much any single one of us will cost the NHS? 
Many people with Down’s Syndrome enjoy good health (like Freddie, so far).
But there are also many people (who do not have DS) born ostensibly ‘healthy’ and ‘normal’ who are later diagnosed with some chronic condition or illness requiring ongoing treatment; or who meet with a life-changing accident. These people also need care that will place a cost on the NHS. Are we to analyse the cost of caring for them and decide what their life is worth in terms of treatment costs? Are we to weigh the lives of dustman and doctor, barista and barrister, in the scales against each other to decide which one is worth the cost of cancer treatment, or insulin injections, or a heart bypass?
And what about those people who will be born with a disability or condition that is not detectable before birth? Should midwives be equipped with a calculator and a pillow, so that they can tot up the likely cost of these imperfect lives and snuff out the ones that will prove expensive?
No, of course that isn’t going to happen. I’m being melodramatic. But to many of the policy-makers, the power-brokers, getting rid of any potentially problematic people before they’re born makes sense. It’s the perfect solution.
So, first they demonise the condition, or the people who have it; the ‘establishment’, the ‘status quo’ (medical profession, politicians, press, etc) use only nuanced language in describing the condition, it’s effects, and those people who have it. Information given out presents only lists of clinical features, possible complications and worst-case-scenario prognoses; people are reduced to mere syndromes, devoid of their humanity. Positive examples are dismissed as flukes. Thus we are persuaded that these less-than-human lives are not worth living, and that it is our responsibility, our duty, to prevent their suffering,and our own, before it begins, and relieve society of an unwelcome burden. 
In the case of learning disability it is only a short step from advocating abortion to advocating euthanasia – once we have been persuaded that such people are less than human, and lack the capacity to reason, to make informed decisions, to understand (none of these assumptions we are lead to make are true, by the way).
At the moment it is only possible to detect certain conditions before a child is born, not all of which are life-limiting. But the medical profession seems intent on eliminating these – abortions, even beyond the limit that would be legal for a ‘healthy’ foetus, have been performed for conditions such as cleft palate which is treatable by surgery. How long before we can detect other things, like Autism, before birth? How long before we can detect genetic tendencies before birth: the tendency to become obese, for instance, or to become addicted to smoking, or to develop certain cancers, and so on – all of which involve the likelihood of greater than average cost in terms of NHS treatment and/or social care? How many of us would never have seen the light of day if this had been possible when we were foetuses?
How do you measure the cost of a life, the value-for-money of a life? What price would they have put on Freddie’s life at 13 weeks gestation, when a 1:12 chance of his having DS was detected. No doubt they would have factored in the probability of a heart defect, or Hirschprung’s disease, hearing problems, on so on (as though he was going to have all of these at once. But no one does have them all. Some don’t have any). 

But how do you reckon up the value of this:

Ethical Questions.

If the situation in this case is as it appears in this article, this is utterly horrifying. It raises certain ethical questions in my mind:   In the absence of speech, how do you quantify pain and suffering (It’s difficult enough in a patient who can speak)?

   How do you quantify quality of life in someone who’s manner of existence is different to your own (especially where that individual knows no other why to be)?

   Where a court ruling is made in favour of euthanasia, should not a court ruling be made, at the same time, regarding the manner of death (withdrawal of fluids is not instantaneous or peaceful as I understand it)?

   How can we be sure that any such decision is taken purely in the best interests of the patient, and not, at least partly, in the interests of the Carers, especially in cases where the patient has not, or is not able to, express a wish to die?

   I think we in the DS community need to keep a keen eye on cases like this, and the debates surrounding euthanasia and abortion, as our loved ones with DS are so often erroneously viewed as having low quality of life, and may be dismissed by others as not having the capacity to know their own minds (quite wrongly). Where does the approval of cases like this, and the portrayal of such as a noble and selfless act of love, leave us? Where is the dividing line between ‘selfless and noble’ and ‘your responsible duty’?

Please note: the girl who is the main feature of the article did not have DS, the picture used is a stock photo.

Killing of disabled girl “wholly inappropriate” and “extremely troubling” says Autism group

The Cross Pirate (who lived in a bubble).

Today, Mummy is a cross pirate, and a sad pirate. Today, Mummy cannot figure out whether she is a homicidal pirate, a suicidal pirate, or is just really, really sick of all your shit. What the hell am I talking about? Well, it’s like this …

Freddie’s teacher has introduced a ‘Feelings Board’ to the classroom wall, to help the children learn about emotions. This term’s topic is ‘Pirates’, so everything has a pirate theme. The board has a number of pirate faces, each one with an expression corresponding to an emotion. The children can choose which one best fits how they are feeling that day/moment. But I doubt if the board offers anything that corresponds with the way I’m feeling today, because I’m struggling to put a name, or an expression to it myself.

Jean Paul Satre was right, you know: Hell really is other people. And the seventh, most torturous circle of hell is family. Except, of course, for my children, who are a little slice of heaven that I would never want to change or be without. But today, and on many other days, the rest of them can happily sod off to blaze (or Bentilee at the very least, that’ll learn ’em).

Yesterday, Daddy Bear teetered on the brink of a panic attack (yes, I really DO mean an actual, clinical panic attack) because someone had moved his porridge and he couldn’t find it and he was in a hurry because he was going to be lateandhecan’tgotoworkwithoutbreakfastandwherethehellisit. Mummy bear has simply taken it out of the microwave, and placed it on the worktop right next to the microwave, because it was done, and she needed to put something else in. An incident like that is bound to leave a mark even deeper than the bite marks on Mummy’s arm inflicted by Freddie because he sensed the suddenly and inexplicably fraught atmosphere and got into a bit of a flap himself. I won’t mention that he also headbutted me so hard that I’m surprised he didn’t hurt himself,because it was on my chest, and a lady doesn’t talk about that area (except when purchasing chicken from the butcher, when it is permissable to ask for ‘chicken bosom’ provided you don’t linger over the words).

He is also anxious (Daddy, that is), along with the rest of the family that I am planning to ‘waste my degree’. It has become quite a cause for concern, as I graduated way back in May, but I am not a millionaire yet, nor even installed behind a desk earning enough that my poor husband can retire.It is not envisaged that his retirement will involve him becoming a house husband – he will be doing a bit of consultancy work  and the like. When I mention childcare, the fact that it has to be paid for, and that in most childcare settings Freddie will require additonal one-to-one support, I get ‘that’s not my problem, that’s your department, you sort it out.’ Does stacking shelves in Lidl, largely just to pay the before/after school club fees, constitute a waste of a Creative Writing degree? Apparently not. Does working from home as a freelance writer , so that I don’t have to pay childcare fees? Very much so – because that’s not really work and you won’t earn enough (however, since I charge very reasonable rates for childcare, with free housework thrown in, anything I do earn can go straight into the family pot).

Of course, what is seen to be done is much more important than what is actually done. Why should I sit on my arse at home, having a whale of a time, while everybody else has to go out to work? I will admit that it has been both a pleasure and a priviledge to be able to spend so long at home with my children, bringing them up myself, helping them navigate the road to adulthood. I can see why they get pissed off about that, even a little jealous perhaps, because while they’ve been slaving away, I’ve been having a ball, didn’t even know I was born. It’s hilarious being the mum who’s shunned at the school gate because their kid is ‘weird (so you must be a very, very, bad parent). It’s a laugh a minute, going to pick your child up from school mid-morning, yet again, because the school can’t cope with his Autism, or the complaints from other parents that he frightens their little darlings with his oddness. I can’t tell you how many times I had tears rolling down my cheeks as I tried to calm him down and counsel him out of the terrible state that some other pupil had got him into, but who wasn’t in the leaast to blame because they were ‘normal’. The day when a group of parents planned to appraoch me, en masse, at the school gate, with the intention of ‘persuading’me to remove him from the school would have been an absolute hoot, if the headteacher hadn’t found out and put the kibosh on it. What? You didn’t know about that? No, you didn’t, because I dealt with it – no need for any of you to worry your pretty heads about it.

And when they’re not plagued with worry about all that, they’re fretting about how much time I waste writing a rubbish blog that nobody will want to read because there’s no struggle, no drama, everything is just too normal and ordinary. If my blog was a work of fiction I would agree – it needs far more conflict and struggle to make it a ripping yarn. But it isn’t fiction, it’s fact. And the fact is we haven’t faced many extra challenges because of Freddie’s Down’s syndrome. So far we have been fortunate to avoid the need for surgery, or the frequent bouts of ill health and hospital treatment that many others in our position face. I’m not going to invent hardships to make it more exciting. When Freddie was born, his diagnosis was enough excitement for me. What I wanted more than anything else was to cling to the comforting familiarity of the life I knew, which seemed in danger of disappearing over the horizon with it’s bum on fire. Luckily, for me it didn’t. And that’s the point. that’s why I write – not to prove what a fantastic mum I – believe me, I’ve been left under no illusion about what a shitty and use;ess mum and human being I am, but to reassure others. I write for the new parents sitting on a hospital bed, clutching their new baby, but looking forward with fear instead of hope. I write for the expectant mum sitting in a doctor’s office, hearing the message that her cherished foetus is defective, best doen away with now, so that she can try again, for a ‘proper’ baby, not the life-stealing monster the doctor thinks she is carrying. I write for all the parents to be who will join their number today, to let them know that, in all likelihood,  things will turn out much better than the physician’s doom-laden predictionswould have the world believe. I write to them know that you don’t have to be heroic, intrepid, or inspirational to give your child with Down’s Syndrome a good life; it’s perfectly possible to go on being an ordianry Joe and still do that.

Now, if you’ll excuse me, I have to go and knock a story into shape so that I can submit it to some journal that will give me a few quid for it. Or to enter it into a competition promising a decent cash prize. Then, if, when, it doesn’t win, I’ll just submit it to a journal that’ll giove me a few quid for it.

Or I might run away to sea, ntaking my three children with me, the only crew mates I want at the moment. We’ll procure ourselves a boat and set a course for the Seven Seas of Freedom from All Your Shit, where we can be happy pirates, ever after. The End.

 

 

The Omega Mummy’s Guide to: Holiday Safety.

The summer holidays are over. I waved Freddie off on the school bus on Wednesday, and in the silence that followed the click of the front door latch, I consoled myself with the thought that I now had the perfect opportunity to work out how to upload the photos that Freddie took when we were in Spain recently

Yes! Not only have I managed to go on holiday yet again, but I’ve also managed to return with all my kids. Hurrah for me!

image

How immoral! Not only have I brought a child with Down’s syndrome into the world, but I have the temerity to flout every rule in the Book of Ignorant Misconceptions by having a normal and very enjoyable life. Really – some people just have no idea how to behave.

It’s a worry, isn’t it – taking the little ones abroad: exposing them to unfamiliar food, strange insects, the heat, the funny water, and virulent exotic microbes? And as if that wasn’t enough, events in recent years have taught us that there is every danger that some Filthy Foreign Pervert will steal one of your little darlings while you’re not looking.

Worry no more: I have found the solution. But how could an ignorant ill-educated, common-as-muck housewife and ‘special needs’ mum possibly know something that some well-educated, well-off, professional people do not? Well, the answer was right under our noses all the time. Where our kids should be.

But what if you want to go out in the evening, you know, have a nice meal and a few drinks? After all, this is YOUR holiday, you don’t want to be cooking: and even if your hotel offers a babysitting service, who wants to shell out extra just to give the staff an excuse to go and rifle through your personal things while your little ones are asleep? Here’s a novel idea – take your children out with you.

That way, no one will be able to get their hands on your most precious things … or your kids.

image

The culture in Europe is still suffieciently continental enough for it to be considered perfectly acceptable to take your children out to a restuarant in the evening. And when I say restaurant, I mean restaurant – this was a very nice place specialising in seafood and champagne, but they didn’t bat an eyelid when we rolled up with kids in tow. Freddie didn’t want to wait until 8pm to eat something with tentacles, so treated him to some fast food beforehand, then he was perfectly happy to sit at the table enjoying a drink and dessert while we ate sea monsters.

You never know, they might enjoy staying up past their bedtime (another novel idea – a treat that doesn’t involve spending hundreds of pounds, just some quality time with their family, on the FAMILY holiday).

A Menorqui man once told me that the things that mattered most to the people of the island were ‘the four Fs’ – family, friends, food and fiesta. Of course, that’s just the sort of tourist-beguiling clap-trap that tour guides are paid to say. This year we went top Malaga by accident and witnessed not only that this attitude is genuine, and holds true as much in a cosmopolitan city as on a sleepy island, but of how it translates into practice. It made our holiday a wonderfully relaxing and memorable experience, especially for Freddy, to whom almost everything is new.

image

Our apartment was on the edge of the Old Town, above a Churreria, a place that served deep-fried donutty things, dipped in chocolate- for breakfast – with real kick-ass coffee, or peach juice for those too young or sensible to have become addicted to caffeine.It was an area that did not seem to be much frequented by British tourists; it took us a couple of days to realise that people were staring at us not because our child has Down’s Syndrome, but because he has a shock of pale yellow hair, and we weren’t speaking Spanish.

Anyone who was not a local was a holiday-maker from another part of Spain who had come for the Feria, a  fiesta or fair, which in the case of Malaga commemorates the re-conquest of the city by Isabella and Ferdinand in 1487; interpreted via the medium of a week-long flamenco-and-fina(that’s sherry to you and me)-fuelled street party. Despite this I witnessed only one example of drunkeness in the whole week: a beautiful, reed-like girl in an extavagantly flounced dress who lurched sideways across Marque de Larios with all the grace of a baby giraffe flung from a moving car, before collapsing into a souvenir stall.

 

We landed in Malaga mid afternoon; by the time we had collected our baggage, and the hire car, and checked into our apartment it was early evening before we were ready to go out and get something to eat. Freddie had been cooped up all day, so we figured he could stand to have a later-than-usual night. We picked a restaurant at random, sat at a table outside, and watched the world go by as we waited for our food. Many of the tables around us were occupied by what seemed to be intergenerational family groups; the narrow street in between was a constant stream of people of all ages, and there were children everywhere, from babes in arms upwards. Never once was I conscious of them being loud, or annoying, or getting under anyone’s feet.

image

If there is any danger that your little darlings will spoil your night with their whining when they get tired and cranky, then, instead of telling them they are ruining your evening, and shouting at them to behave, try taking them on your knee and soothing them for a few minutes. When Freddie’s feeling grumpy he loves to have his face stroked, especially with a soft, tickly brush. Even in the warmest countries it can get a little chilly after sundown, and where hot water bottles are not readily available, a toddler makes a great substitute.

Most of our evenings ended here, on Calle Martinez. Freddie soon learnt to recognise it, no matter which direction approached it from: it was his favourite street in the town. Can you guess why?


If, during the course of the evening, your children get so tired that they can barely stick out their tongues to lick an ice-cream, then just tuck them up in the buggy or pushchair, or on a comfy seat, perhaps with a light cover over them so they don’t look too untidy.

image

Now you have the perfect excuse not to get roped into making a fool of yourself joining in with any dancing, plate smashing, etc that is going on around you. Or you and your partner could take it in turns. Just don’t forget to gather everyone up at the end of the night and take them with you when you head back to your accomodation.

Yes, I gave a small child my brand-new camera, and let him take photos of whatever he wanted. It kept him amused for ages, while we sat and enjoyed a leisurely lunch together at a bar on the marina. The results were really interesting, especially the shots he took with the camera resting on the table-top, of his dad looking like he was having a close encounter with a UFO (which was actually just a plate of Iberico ham).

image

Letting Freddy have the camera was a great way of getting him to really take notice of the things around us. Now here’s a sight you don’t see every day. Hola, ladies! (This isn’t one of Freddie’s pictures).


image

This isn’t something you’d see back home either, thankfully. This ‘quaint’ mural of gross racial stereotypes was painted on the wall of a nursery school in the street where we abandoned the hire car for a week, after discovering that it was too small to accomodate the Major Buggy.

Of course, the most important thing to remember is that children are NOT the ultimate lifestyle accessory, whose appearance, possessions, activities and acheivements serve as a magnifying mirror to their parents’ status.

When I came to upload the pictures I found that almost all of them had been deleted from the camera. I could have cried… But, it’s really not the end of the world. I’d had the pleasure of spending whole days just witnessing his delight at being able to snap pictures of whatever came his way, the tender patience of his sister, posing for him at his command, even though she hates having her photo taken, and the memories of a week of family, food, fiesta and fun.

img_6998

There’s more culture in this hand than just Staph Aureus or  E-Coli. It’s a Picasso sculpture (sadly, this isn’t one of Freddie’s photos either).

So, there you have it – the Omega (i.e. the opposite of Alpha, but not actually ‘slummy’) Mummy’s Guide to Holiday Safety. Of course, dear reader, I realise YOU knew all of this already, and your friends all know too, as do mine. It just amazes me that there are some people out there who apparently do not: and I am reminded of this every time I go on holiday and return with my family intact, despite the fact that I do not have access to kid’s clubs, babysitting services … or prescription drugs.