11/1/17 My Bad … or is it?

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. 

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8/1/17 This Weekend …

This weekend we have been #justaboutcoping with making gingerbread men, a visit to the cinema, and swimming, in our #worldWITHdowns , and I was happy to find that I can still lead a boy astray (even if only my husband).

I don’t want to invite a jinx to the party, but the first full weekend of 2017 went pretty well, for us at least.

We took Freddie to the cinema for the first time on Saturday. Previously I haven’t thought that his attention span would sustain him through a whole film, but over Christmas he has sat and paid attention to a couple of films on TV all the way through; so we booked tickets for a Mini Mornings showing at our local Vue cinema – with tickets at only £1.99 even for grown ups, we wouldn’t be too miffed if we had to leave before the end. We watched ‘The Secret Life of Pets’ in an almost empty auditorium. The few other patrons were all families with young children. Freddie was really good – he chattered a bit, but I don’t think any one else could have heard him over the soundtrack, and he sat in his seat and watched through the whole thing.  I’m not sure how much he ‘got’ of what was going on, he didn’t laugh at the jokes, but he was certainly paying attention – repeating bits of the dialogue and ‘pretending’ to be the characters (‘I’m Max, I’m Duke’). But that’s good enough for me – it’s one more thing we can now do together as a family, and each get some positive enjoyment from.

The plan (Daddy’s plan), for after we’d dropped Freddie off at his Nan and Grandad’s following the film, was for him and me to go for a brisk and bracing guilt-trip walk in the countryside to combat our slovenly slide into middle-aged spread, caused by excessive laziness and wine consumption. I thought he must be coming down with something he caught in the pub on Friday.

The prospect of yomping through the mud in the woodland around an abandoned colliery, on a drizzly Saturday filled me with such utter delight that I felt I did not really deserve such a treat. No, really, I absolutely did not deserve it. I have recently discovered that I have a healthy height:weight:vanity ratio for a woman of my age and build. You think I have no excuse for not joining a gym and getting a washboard stomach? I have the prefect one – I’m baking gingerbread with one or more of my children. And eating it.

Anyway, on the way back to the car we went past the ‘new’ bar, the one with all the artisan beers, the one we said we’d like to go to together, and I decided we’d be going on a slightly different guilt-trip instead. What a shame, I said, that we wouldn’t get time to go to that bar today, while Freddie was at his grandparents, seeing as how I haven’t been there yet, but Daddy has, several times. It would still count as exercise if we walked back into town after dropping Freddie off, we could go via the ‘scenic ‘ route through the side streets round where he used to go to school, and look if any of the nice houses were for sale, and then drop into the bar for a coffee.

When we got to the bar the coffee miraculously turned into rhubarb Gin (because they’re so much better at gin than they are at coffee. And it’s  no use having a single because you’ve barely sat down before it’s gone).

After a while Daddy said he was peckish and I just happened to remember a that a place nearby does tapas – well, it’s an hour’s walk home and you can’t do that on an empty stomach, can you?

By the time we’d eaten that it was nearly time for Freddie to come home, so we caught the bus. Two stops before ours we saw that we were the only passengers still on it. I laughed and said that since we were sitting at the back we could have a little snog … so we did, just a kiss or two, until the bell rang for the bus to stop and we realised that we weren’t actually the only people on the bus. Oops!

On Sunday I remembered why it’s  been a while since we went swimming as a family, but not until after we’d got in the pool –  it was bloody freezing. When Freddie started shivering we thought we’d best get him out and warmed up quickly – his body doesn’t seem to regulate it’s own temperature too well at extremes . As I wrapped him in a towel he looked up at me, and through chattering teeth said: ‘I want to go back in the pool’.

We got home to find the gingerbread men we made on Friday evening had matured nicely by now, and were slightly chewy – perfect as far as I was concerned. I don’t want to break my veneers, and I especially don’t want the ignominy of breaking them on a biscuit I made myself (with a little help from Freddie). I also found a use for some of the free McDonalds ‘toys’ that are cluttering up the back of a drawer. From among the assortment of inexplicable plastic tat I extricated two miniature plush toys, one Max, one Duke, that we acquired many moons ago when ‘The Secret Life of Pets’ first came out. Freddie’s gone to bed tonight clutching one in each hand.

If this is the terrible, miserable, life with Down’s Syndrome the doctors warn expectant mothers about, then I’ll take it; and you can keep the change. #winningatlife

5/1/17 Well, That’s Christmas Done.

Hygge is not the onomatopoeic word for the action of coughing up a hairball. It is (as I’m sure you’ve discovered) the Danish one-word embodiment of the concept that best translates as ‘cosiness’. I love it – because it lends a fashionable kudos to my previously slightly uncool tendency to be a homebody. It neatly sums up what Christmas is all about for us – cosiness, contentment, family, food, and relaxation, and we’ve been unwittingly been practising it since long before it became the latest ‘Homes and Gardens’ must-have trend.

We had the most lovely, cosy, happy time. And before anyone says ‘Liar, liar, pants on fire’, because you can guarantee someone will, let me tell you: happiness is a state of mind, not a circumstance.

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My parents had far more fun sharing Christmas dinner with us than eating it in their own quiet, immaculate house off the Royal Doulton dinner service, because it meant they spent the day with their grandchildren – the mismatched plates did not matter, nor the Christmas Eve balloon incident that left me with only two wine glasses (the balloon was not entirely to blame – Freddie was on the other end of it).

They like us, also found it especially good to have big brother Harry back home for a while, to have him sitting with us in the living room of an evening chatting, and enjoying a drink. I had imagined that having him living away from home would get easier as tie went by, but it doesn’t; it gets harder. It’s slowly sinking in that his childhood really is over, no going back; like we’re losing him little by little, and it breaks my heart a bit more every time we have to say goodbye. It’s come too soon.

Even Daddy, who has the kind of highly tuned senses that mean he tends to find the noise and smells of other people somewhat … intrusive, not only survived being cooped up for ten days with a gleefully shouting, singing, farting eight-year-old (and a lavishly farting nearly-twenty-year-old with a taste for toenail ale), but even professed himself reluctant to go back to the relative peace and quiet of work. We left the children and old folks in the living room and went off into the kitchen and cooked Christmas dinner together. Santa helped us out by bringing Freddie quiet toys like playmobile and lego, and the surprise hit – a set of old-fashioned wooden nine-pins. something we all joined in with, using our narrow hallway as a bowling alley ( i quickly learned to line the skirting boards woth cushions. I also taught Freddie a simple card game, Go Boom (we haven’t quite worked our way up to Poker yet, but we’re working on it – never say I don’t go out of my way to teach him valuable life skills!) I wasn’t sure how much he got out of it at first, but on the last day before he went back to school he asked me for a ‘game’. when I asked which game he wanted he said ‘cards’. So I parked my chores for a while and we played a couple of hands, just me and him, in the quiet house.

So, the long-awaited Christmas break has come and gone in the blink of an eye. One of the last things we did before everyone went back to work and school was to book several sort breaks in the UK, at budget ‘hotels’ (chains like Travelodge and Premier Inn), scattered throughout the months from February to August. The samey-ness of these places is helpful to Freddie, as, after the first couple of times he’ll know what to expect

. We’ve proved to ourselves that we can go abroad if we want to, but this year is going tobe about building little pockets of fun and relaxation into our lives wherever we can, instead of one big blow-out which, like Christmas, is anticipated for ages, but over in the blink of an eye.