We all believe in it. We all want to be part of it. But does it actually exist? Join me on the Firefly Community website today to find out what I’m talking about: http://community.fireflyfriends.com/blog/article/the-normal-family
Freddie was reluctant to eat his cottage pie at first, perhaps because he overheard me explain to Daddy that it’s called that because it’s ‘thatched’ with mash and it tastes like wattle and daub (and probably has a few spiders in it, like the thatched cottage we stayed in on holiday). When life gives me lemons I make lemon cake, provided there’s any left – most of my crew like to peel and eat them like oranges. Apart from that we’re a nice, normal family (as far as anyone knows).#downsyndrome #downsyndromeawareness #mummyblogger #SENblogger #post40blogger
This old post, written in the early days of my blog, popped up as a Facebook memory today. Reading through it I am reminded not only how lucky we are that Freddie sleeps so well, but also how quickly time passes – our eldest is now at University and rarely at home, the second eldest has her own life, studying, working, volunteering, and keeps different hours to us. Above all it has reminded me of how important it is to remain creative in carving out bits of time for ourselves, to be Tim and Kerry rather than just Mum and Dad, for the health of our relationship:
Getting quality time alone together is a challenge faced by many parents. Factor a child with additional needs into the equation and the problem increases, especially if, like us, your babysitting options are limited.
Tim and I inhabit the same space a lot of the time; but I can’t say that we spend a lot of time in each other’s company, because we rarely get to speak to each other, except to make purely functional requests. The moment we attempt to say anything more than ‘do you want a cup of tea?’ Freddie inserts himself into the conversation, loudly and persistently trying to turn our attention back to him. He has to be taken to the toilet, supervised while he eats, and even while he plays, as he is inquisitive, mischevious (typical third child), has no sense of danger, and views rules as a dare.
Although he’s in bed by eight and can be relied upon, most nights, to sleep until at least 6am, as his brother and sister did before him, we don’t really get any respite. When our older two were little, evening was our time. Once they were tucked up in bed we knew that they were unlikely to disturb us, and if they did need anything they’d shout rather than come down, so we could shut the living room door and enjoy some time as a couple.
But not any more. Our once well-trained, obedient older children are now teenagers straining at the leash. They don’t have bed times. They come down and raid the fridge, invade the living room, take over the YouView box and snaffle our peanuts, or any other treat we’ve got. Since the eldest turned eighteen even our beer isn’t safe.
Yes, we have a bedroom with a door, but they rarely remember to knock before they come galumphing in demanding a note for P.E. or more toothpaste, shower gel or hot chocolate powder. Or we hear a sudden howl of anguish from downstairs, because someone has exploded something (not neccessarily food) in the microwave, or is trying to sort out a most unfortunately blocked toilet with a coat-hanger.
And so our previously redundant bath-tub, made obsolete by that ‘Johnny-come-lately’ the power shower, is enjoying a new lease of life as a place of recreation. Not least because we can lock the door.
The whole thing takes on the air of a midnight feast: we take up wine and nibbles, and borrow Freddie’s spill-proof portable DVD player. We fill up the huge tub, add some Matey bubble-bath (you can keep your grown-up ylang-ylang and aromatherapy nonsense — Matey gives the best bubbles ever), and light candles. Then we can enjoy the luxury of, not just relaxing in deliciously warm, scented water, but of talking to each other, having our treats, watching something, all without being disturbed.
There is still the occasional rumpus from downstairs, but the threat of us hurtling down the stairs, naked except for a few bubbles, is generally enough to make the teens decide that manning up and sorting it out themselves is probably the lesser of two evils.
We talk about ‘a woman’s right to choose’. Eight and a half years ago I exercised my ‘woman’s right to choose’ to the fullest extent. I chose to continue with my pregnancy knowing that my child would have Down’s Syndrome.
I am a rational adult. Given accurate and balanced information (that’s another story in itself) I am perfectly capable of evaluating the data and weighing up the pros and cons of any situation or argument. I made a conscious, rational choice in the full knowledge of what I was doing.
I made my choice knowing that I would not have to sacrifice my life, because nothing feels like a sacrifice when you have made the right choice.
I made my choice knowing that my son would not be a burden to me; he would be my child. Yes, I would have to look after him for longer, and he would always need more help than most, but he would bring me just as much joy, and love, and pride, as his brother and sister.
I made my choice in the knowledge that my son need not be a burden to you, the taxpayer, when he grows up (let’s face it, that’s what you mean when you talk about a burden on ‘the state’ or ‘the NHS’). We, his parents, are rational adults – we would plan ahead for his future, for when we are no longer here. I made my choice in the knowledge that my family also pays its share of tax (we don’t begrudge extra care to others who need more than we do, not even those who have smoked, drunk, or drugged themselves into an early decline – everyone has their frailties. And while we’re talking about cost to the state, let’s consider how few, if any, adults with Down’s Syndrome will end up in prison – it’s a valid point).
I made my choice aware that my life would not perfect: it never has been, but then, whose is? Life does not have to be perfect to be happy. When you make the choice that is right for you, it is much easier to find moments of contentment day-to-day: this is the root of happiness.
So, if you see me and my son hand-in-hand in the supermarket or at the park, please accept that this is what a ‘woman’s right to choose’ sometimes looks like.
Because a ‘choice’ where only one alternative is deemed acceptable, is no choice at all.
A friend shared a post today about the oft-quoted, and irksome phrase ‘Special babies only come to special people’, and it put me in mind of this short post I wrote two years ago:
Platitudes and Attitude.
A note to well-meaning people.
You say: ‘Special babies only come to special people’. I know you think you mean well, I know you think you are paying me a compliment. But you are not.
You are holding that phrase out in front of you like a talisman against the evil eye: reassuring yourself that it could never happen to you, because you are ordinary, just the same as everyone else, not ‘special’ or ‘different’ like I must be. There’s nothing about you that attract that kind of luck.
Well, guess what? I’m just like everyone else too. I’ve done nothing good or bad in my life to attract God’s eye, either.
I’m just like YOU.
This little boy is my baby, I carried him in my womb, fed him at my breast and he’s one of only three people who can call me ‘Mummy’. That’s the most special thing in all the world. And the most ordinary.
I’ve been avoiding Facebook and Twitter lately. I recent weeks the world according to social media has seemed a hostile and threatening place to a vulnerable family like mine, standing, as we do, in the cross-hairs of the Right-wing’s rhetoric of blame and hate. I’m sure it must feel the same to any member of any minority or population group that is easily disenfranchised. We ask for very little in the way of help from the state or the NHS, but it is tempting in these times to think that one day soon it may be best to forgo what little we do get in order to pass under the radar, should history decided to repeat itself. I try not to think about it, tell myself I’m overreacting to world events, but there’s always a tab open in the back of my mind that’s formulating plans to turn the shed into an arsenal.
I’m simply too exhausted to respond proportionately or positively to my fear; more exhausted than I have any right to be. My husband says it is the menopause, and its hitting me so hard because I have time on my hands to think about it. My doctor, however, thinks that the most likely explanation for my symptoms is a form of sleep apnoea, although, he said to me ‘You’re the wrong shape for it’. There are always exceptions to rules, so he has to test me for it. Last month I spent two nights wearing a pulse oximeter. when I returned the equipment to the hospital I was told that I would be sent an appointment to attend the clinic again in a couple of months’ time for the results. Two days later I got a letter stating that I needed a further ‘limited’ sleep study: ‘limited’ to having probes up my nose, sensors attached by means of belts around my chest and abdomen, and, possibly, sensors also on my thighs. I pick up that little lot tomorrow.
So, because I’m already knackered and stressed, it is the perfect time to sell our house. We really want to be nearer town, in the area where my husband grew up. And since I’m at home all day with ‘nothing else to do’ (insert eye-roll emoji) I was in charge of getting it ready for the market, and dealing with the estate agent and the solicitor. I googled ‘how to sell your house’ and spent the subsequent fortnight painting (all but one room in the house), decluttering and cleaning, before the photographer came; I was accused of ‘obsessing’ by my nearest and dearest. Within hours of the photographer’s visit our house went live on the agent’s website. That was a Wednesday afternoon. By the following Monday morning we had two offers on the table.
Now I was in a quandary. It made sense on paper to take the higher offer, but I couldn’t help feeling suspicious of it. When the estate agent rang the couple to ask for their feedback on the viewing they said they might be interested, but had other places to see. He said they should be aware that there was an offer on the property that was under consideration. Within a few minutes they rang back with a higher offer.
I’d met the couple who made the lower offer, and knew from their reaction that they were genuinely enthusiastic about the house. They as much as told me they would be making an offer. I had not met the other couple – the only time they could come to view was when we were due to be in Sheffield for our elder son’s birthday, so my mum conducted the viewing for us. Something about their offer rang alarm bells with me, and I was reluctant to accept it. We considered the situation for 24 hours, or rather, I fretted about it while everyone else told me I was being silly, that the whole thing was a no-brainer.
When our estate agent told me that they had rung back twice during that time to ask of the offer had been accepted or not, I reluctantly agreed that, yes, they did seem genuinely enthusiastic and we should accept the offer. When I spoke to the agent again later, he said they were ‘thrilled’ and had sent details of their solicitor and mortgage provider over immediately. So we instructed our solicitor, and set about looking for our new home.
It’s amazing just how openly rude people can be about your house when they come to view it as a prospective buyer. I know you shouldn’t take it personally: they are there to appraise your house as a commodity, not to judge you personally, but … when a young couple just starting out, with no kids yet, come along with the parents who are buying thre house for them, and declare the kitchen (in which you’ve cooked meals from scratch for yourself, husband and three kids) to be too ‘cosy’ and only fit for reheating chicken nuggets, and indeed the whole four-bedroomed shebang to be far, far too small, it leaves a bit of a bad taste. I don’t know about you, but our first house as a couple was a two-up, two down doer-upper, and it took every penny we had to pay for it – but there was a sense of acheivement that came with buying that tatty old place and making it ours, leaving it better than we found it. Our two eldest kids spent their early years in that house and didn’t suffer for it.
I suspect they are in for a rude awakening, expectation-wise. Infact, having looked around at what is available for up to £100,000 more than the asking price of our current house, I can say they almost certainly are. You don’t get much for your money around here at the moment – unless dirt is suddenly worth more per ounce than gold.
We decided that we would confine ourselves to asking relevant questions about he houses we viewed, but to refrain from commenting openly on the property in front of the vendors, which was just as well. The first house we looked at might have been set up for a training film entitled ‘How NOT to sell your house’: functioning doorways blocked up by furniture and stacked toys, chunks missing from the worktops in a grubby kitchen which had no room for a fridge, a shower screen which looked like frosted glass but was actually just desperately in need of a really good clean, a couple of rooms where you could barely get further than the doorway they were so full of stuff (including the displaced fridge), there was no way you could assess the actual shape or dimensions of the space. We thanked the vendors for their time, got in the car and proceeded straight to the second viewing.
This second house was at the upper limit of affordability, but the photographs promised much,as did the particulars – a family kitchen, two reception rooms, a bathroom AND a shower room, and a downstairs WC. An estate agent was showing us round this one.
We stepped into an icy atmosphere. The house was unrecognisable from the photos; it looked like it has been abandoned in the teeth of some natural disaster. The kitchen cupboard doors were hanging off their hinges, and though most of the furniture was gone there were clothes still in the closets, and in one forlorn room, a partially dismantled cabin bed with some lovely toys piled on top. The whole place reeked of dog and acrimonious divorce. Thick furry mould framed most of the windows and there were some intriguing stains on the carpets.
And so it continued. By the close of that weekend we had viewed half-a-dozen houses, five of which were in similar vein – grubby, neglected and with bad extensions tacked onto the original building by means of bottleneck corridors. There was only one house we would have considered, again at the limit of our affordability. But though it was beautiful and spotless, we noticed that the kitchen could not accomodate a fridge, there was no downstairs loo, and the sink in the shower-room was the size of a cereal bowl.
Monday was the start of half-term, and we had booked to go away for three days. We were optimistic, we still had several houses to see when we got back, and even harboured a hope that perhaps some others might come onto the market while we were away.But on the second day our estate agent rang my mobile. ‘There’s been a development,’ he said, ‘your buyers have dropped out.’ They’d changed their minds, apparently, decided they didn’t like the house after all.
Why on earth would anybody make an offer on a house that they weren’t completely sure they really liked? Someone, perhaps, who just wanted to keep their options open while they had another look around before making up their minds? Even though they knew there was already another offer being considered on the property, and so they might be elbowing a genuine buyer out of the way? If that is the case then I think it’s pretty shabby and selfish behaviour. It was not clear at first whether our solicitor would refund our deposit because the cancellation had occurred not as a result of some unavoidable change of circumstance that rendered the transaction impossible, but on a whim.
In a perverse way I think we may have actually benefitted from their shabbiness. In a plot twist that wouldn’t be believable if I’d written it, when I began to ring around estate agents to cancel the viewings we had booked, as we were no longer in a position to proceed, I discovered that two of the places we were due to see had just accepted offers, and another, the one we held out most hope of, had been withdrawn from the market because the vendor couldn’t find anywhere to move to, either. If we had continued to struggle to find a suitable property ourselves, we would have agonised over it, it would have really troubled our consciences to have to let them down. But now we wouldn’t have to . And they weren’t in the least bit bothered about letting us down, so everyone was happy in the end. Especially once the solicitor confirmed that we’d be getting a refund.
As we drove home we talked about what we’d learned from the experience – that not everyone has the same principles as us; that things usually work out in the end; that we might live in a slightly inconvenient place, but the house itself and the street, are just fine and dandy. We’ve learned, by looking at, and considering, other properties, which facilities are essential to us, bearing Freddie’s needs in mind, and which we can do without; and that our kitchen really isn’t especially small. Most importantly, we have learned that we already have a lovely home that has everything we need, and more than most houses that fall within our affordability bracket can offer us – a house in which we can manage easily, both financially and logistically. We asked the estate agent to suspend marketing for three months while we consider what to do next. Then Storm Doris blew the ‘For Sale’ over and it was like, well, a sign.
I’ve started to fall in love with my house all over again. All I need to do now is to get on top of this exhaustion, so that I can manage more than just the daily essentials of caring for Freddie and keeping the rest of my family clean, clothed and fed. So bring on the bedroom equipment, but only for the sleep study.
You wouldn’t believe it, but this angelic-looking little specimen has given me hell this morning. Even I, stubbornly positive though I am, have bad days.
Mornings have long been a flashpoint. Freddie does not like to be rushed; he likes to do his own thing, in his own time, and he has different priorities to me. Getting ready for school, therefore, is often a fraught business, with me needing to get him promptly toileted, fed, medicated, toothbrushed, washed and dressed before the minibus comes, and him wanting to do anything but. We have a visual timetable for getting ready, with ‘rewards’, we try to leave ourselves plenty of time, we try to incorporate opportunities for some choice so he can feel he has some ‘control’, but often he just point-blank refuses to cooperate. Some days he starts out really well, then suddenly, as though a switch has been flicked, his demeanour changes completely – and I can rarely tell why. When I require him to brush his teeth or get washed, or dressed, he will lie face down on the floor with his arms clamped to his sides, making himself heavy like a dog that doesn’t want to go walkies. At eight we are beyond the point where it is desirable, or even possible, to pick him up, or do everything for him. If I try, he fights – hitting out, biting, kicking and swearing.
Today none of my usual strategies worked, I couldn’t see what I could do to get him up off the floor, much less ready and out of the house. I saw a day in the future when Freddie would be bigger than me and I wouldn’t be able to manage him at all. I think I must have reached the zenith of stress: I thought I was going to collapse.
In tears I rang CAMHS and left a message for our LD nurse. The last time she came to see us, she said that she thought we were doing really well and would soon be discharged. ‘Doing well’, I think, means that they’ve got me trained; they know I understand how to support Freddie’s behaviour, and that I implement the strategies they give me. No one seems to be willing to listen when I say they’re not working. I know our nurse does her best to help me, but her hands are tied to an extent because the service is overstretched.
I try not to take any services I think we can manage without. On the rare occasions when I do ask for help, it never materialises; I get suggestions for the things I should be doing to help myself, but invariably these are things I’m already doing.
When I needed support with one of my elder children’s additional needs I had no choice but to help myself because there were no services locally that we could access. I’ve been doing it myself for a long time, I’m one person, I’m human and I’m running on fumes now.
CAMHS is the only support we get with Freddie. The nurse did ring me back. She did listen, she did make suggestions, and she’s going to come and see me again. But I can’t help but feel that we’re going over old ground with the ABC charts she’s bringing. If I could identify the triggers, I would have done by now, and would have acted on it.
She once said to me that my problem with Freddie was that my expectations were very high because my older children were so well behaved (she’s met them both several times, seen them interacting with me and Freddie).
That’s not high expectations, it’s called having high standards. It’s no accident that they’re so well behaved.
There’s some issue here that’s not being addressed. We need a proper assessment. But that’s the one thing they seem most reluctant to give us.