So, you're quitting for the third time? How's that going?

Look, I'll call this at the outset; this blog isn't for the faint-hearted or very young.  This is  the warning on the outside of the cigarette packet, ok?

So, today she's home for the weekend and is quitting smoking, for the third time.  This time she has gum, patches, pills, an oral spray, and peppermints.  Oh, and other little cinnamon-tasting sweety things that I discovered as well.  It's a rigmarole and according to the paper-work that has come with her, I have to keep track of all of this along with every other pill she is taking.  (It is my resolve that she is pill-free by the end of the year - there, I've put it in writing - so we shall see.)  Her staff are very supportive and a few of them have also given up smoking and managed to stay off the demon tobacco. However, there are those who haven't, and, well, there's the rest of the world's smokers out there as well.

It all started many years ago at one of her residential placements where staff all smoked.  They said it helped keep them calm.  She thought that was a great idea and since she needed to also keep calm, she managed to either bludge cigarettes or they were given to her quite freely.  Or she stole them, or picked up other people's butts, or stole money to buy them.  She was totally hooked.  I, on the other hand, along with the rest of the family, could not believe she had started smoking, let alone how she was acquiring them.  I remember following her down our garden path when she was home once, camera in hand, to see for myself if she was actually smoking and whether she was drawing back the smoke or just puffing.  It was the complete draw-back, probably with a few smoke-rings thrown in for good measure, but I didn't wait to see.  I clicked the camera and made for safety.  Too late.  Furious with me, she took the camera when I wasn't looking and ripped out the sim-card.  That was quite a few years ago now.

At the time, I spoke with several friends, with staff, and with other parents who were in the same boat.  I went with the advice of letting her have 5 cigarettes a day - God knows why, but I did.  That lasted all of a week because she was clever enough to take out all the tobacco of the tailor-made cigarettes and, using cigarette papers, rolled herself seven.  I know.  Clever and cunning,  and more fool me.  Over the years things went from bad to worse and naturally the cost of cigarettes went up each time the Government prepared its annual budget.

I'd heard of Champix, a drug that has great success in getting people off the habit.  Now, the good thing is that you can get Champix on prescription which the Government subsidises.  After the birth of a few much longed-for nieces and nephew, she decided with great persuasion from us, that she would give up in time for Christmas.  For the first time.  And, to her very great credit, she did. Credit also to her supportive (new) staff.  It was difficult, because the drug did seem to increase her hot-headed behaviours, but she remained cigarette-free for many months, so much so that we all took it for granted that that was the end of it.  Success!  But sadly, I have to report that it wasn't the end of it and within the following year she had taken up smoking again.  Stress, she said.

Alarmed, I said I would help pay for another round of Champix (you only get one 'free' round of this per 12 months) and I did.  It wasn't cheap, but for the six-week term it took, I gladly paid as she was keen to try again for the second time.  Her residential staff were once again supportive and particularly great with the increased behavioural outbursts.  Once more, we were smoke-free for another 6 months before once again she picked up the habit.  Stress, she said.

After hiding it from me for a few months she is trying once again to give up.  This time she's on another drug, Zyban.  I've looked up all the side-effects and I'm not that happy.  It has to be taken along with the patches and all the other paraphernalia (as per above paragraph 1).  She's broken the programme twice already.  Stress, she said.  "And I can't sleep, so I've got this other pill for sleeping."  I'm not happy.  But this weekend she's determined to carry on with the programme and I'm doing my level best to be positive for her sake.  It's particularly difficult as for some reason 2016 seems to be an unhappy year as far as people shuffling off their mortal coils, and that disturbs her greatly.

After she'd failed the Champix programme for the second time, a PW expert told me she'd always be a smoker and it simply wouldn't work.  I was in tears after that.  It's rough being a parent and trying to do your best for your child, no matter what age they are.  There's a huge and very complex issue of co-dependency (look it up, it's worth a read... and don't blame yourself), wrapped around the core of guilt that somehow makes you feel you were, and are, responsible for this person from the very outset and until the end of time. 

One side of the coin I recently flipped goes all-out for good healthy living and an attempt at avoiding all the cancer-related illnesses that nicotine can bring, plus the cost of the habit when you're living on a sickness-benefit; the other side of the coin brings up "choice", that hysterically fashionable word that government agencies are wont to use in some vague attempt to look pro-active and on top of the situation.  They just don't get it, and never will.  That's why guardianship is so important when our kids become adults - it at least gives you (the parent) some sort of control over what they can and can't do when it becomes (as it so often does with PWS) life-threatening.  Sometimes it feels about as powerful as a wet bus-ticket, but sometimes it's all we've got.

You see, I know because it's happened before, that if I say, ok, your choice, she will start smoking, and there will be no limit.  Seven cigarettes a day will never be enough.  There will be a huge drive for more and that means finding the money to pay for them.  When you live on a Sickness Benefit as she does, and you have to pay for your doctor, chemist, personal stuff, and the cat which includes veterinary and cattery fees, then feeding the habit will mean everything else will lose out.  That means debt and theft, and we'll end up in court. Again.  Stress just doesn't cut it, not to mention the eventuating illnesses.

I reckon I'm fairly easy-going and if the world isn't going to stop turning, I'll generally choose to 'go with the flow', but when you step on my toes/cross the boundary/break one of my life-principles, or try to force my bottom-line to go even lower, then you'll meet a brick wall.  It's really hard maintaining that brick wall, I can tell you.  Some days it's nigh on impossible, but No-Smoking is one of my brick walls and I am determined and steadfastly refusing to let it be broken.

If you can possibly avoid your son or daughter taking up smoking, then please, at all costs, do so.  The other side of the coin of choice is everything I've just told you about.

Introducing The Lodger

(with thanks to our contributor, Emma Walsh)

The Lodger’s (that’s our son with PWS) cousin aged 5 has an amazing understanding and tolerance of PWS. She’s grown up with PWS in her life and knows no difference. She's The Lodger’s best friend and already a member of the secret food police.  

She comes running into the room,

“Auntie, we have a problem! The Lodger is saying he’s hungry and he’s just finished his snack, what are we going to do?”

I went in to talk to The Lodger, with my concerned niece by my side. I found him lying on the couch cushions on the floor, pretending to be asleep. He woke up, smiled and signed ‘eat’. He was playing. It was breakfast time. I explained to his very caring cousin, that he wasn’t really hungry, he was just using his hands to tell her he was hungry in the game. She smiled and the game resumed…

The Lodger has been using sign language since he was about 14 months old. As we live in Ireland, we use Lamh but it's not very different from Makaton (or other simple sign programs).  Its simple signs help him communicate his needs. THe majority of the signs are very obvious and so it's very easy to learn and understand.  Signing has eased The Lodger's frustrations.  He's been able to tell us he's thirsty, tired, or wants to read books, all by using his hands.  We started simply with 'eat' 'drink' and 'bed' which moved quickly to 'NO BED' when he learned to shake his head!

 

In the peak of The Lodgers sign usage, (before words) we probably had 50 to 60 signs that we used regularly - from activities like ‘drive car, walk, swim’, to animals like ‘cat, dog, rabbit, horse’, to feelings such as ‘happy, sad’ and words such as ‘more, finished and help’. 

The problem being an adult brainwashed into doing 50 or 60 different signs is that in normal grown up interactions the signs slip in and people start to wonder if you are going mad.

 At three years old now, The Lodger is starting to put two to three words together but still uses signs to get his point across, usually to emphasise the same point as above: ‘No bed!"

The lodger started Playschool last September and although he did have a few words, he was able to match them with a sign which was understood by his preschool assistant and teachers. Signing has really helped him with his independence. It’s been wonderful to see him dropping signs as he’s mastered the word and he loves the celebrations of learning new words!

When we were first told about signing, it was daunting. We weren't sure how quickly we’d pick it up or if it would be effective, never mind trying to teach a child without words. I can honestly say, it’s part of our day to day lives now- even though The Lodger can speak many words now, I’ll often see my husband sign ‘drink?’ while the Lodger responds with actual words. I’m guilty of not dropping the signs myself and often use signs and word combinations with The Lodger - and others!

As we introduced new signs for the Lodger to learn, they became part of our daily conversations with everyone! The sign for happy is two thumbs up and I still sign 'happy' in response to questions of how I am!  Between that and carrying invisible pigs (you can read about that story on our blog) people must really wonder what goes on in our house.

Signing is not just for children with additional needs. I’ve encouraged friends with typical babies to use signing too, it’s easy to learn and a great tool to help your child be able to communicate with you!  It's a fantastic bridge for the often frustrating communication gap before speaking comes naturally. Simple signing has really helped communication with The Lodger. The only problem nowadays is understanding his words when he refuses to sign to really make us work! I think we're learning as much as The Lodger these days. Two thumbs up to that!

You can read more about The Lodger here 

Carpe Diem - Seize the Day!

Yesterday I went to see my daughter - she lives in residential care about an hour away.  My plan was to take her out for morning coffee and just spend some time with her after what had been a dreadful Easter.  Why? I hear you ask...

...well, she caught a tummy bug, something she never really has and if she does, then it's normally in the form of diarrhoea  (I know... I wasn't going to tell you all this, but you did ask).  This time, however, her stomach became distended and very hard.  And we all know what this could mean; with the lack of vomiting reflex, the stomach could burst and the results could be lethal.  I didn't know what to do and, naturally enough, it was on the one day when everything was closed and we live way out in the country.  It was very lucky that she vomited.  Twice.  Look, I'm not going to get into details, suffice to say that it took hours to clean up and both her father and I also got the bug.  Happy Easter.

But I wanted to tell you about yesterday.  I'd phoned to make sure she was ready (and hinted at the fact that last time I saw her house it was extremely untidy), and I arrived on time to be greeted with a very tidy house and my daughter with what can only be described as 'raspberry red' hair.  She was wearing a very pink cardigan, so the red hair could not easily be dismissed.  I did a double take - much to her amusement, of course.  As we sat down in a lovely little cafe with the sunshine gleaming on the raspberry-red head of hair, I thought how pretty she looked and how happy she was, sitting there smiling at me.  I asked her how things were going and she told me she'd got herself a new job (a paper run, which is such a great way to exercise, plus get a small financial reimbursement), then she said she'd stopped eating bread, and was really becoming a vegetarian and hadn't eaten meat for two weeks, plus had taken dairy out of her menu, replacing it with soy and other proteins like tofu.  She said, with a big grin on her face, that her staff were really great about this and she was loving the change in menu.

I was really taken aback - on many levels.  My skeptic self said, "wonder how long this will last", and, "bet she's really enjoying finding out what else she can eat..." while my proud-mother self said, "for heavens' sake, just enjoy the moment." 

So I told her how proud I was of her decisions, how well she was looking, how much I loved the raspberry-red hair, and praised her for looking out for a new job, particularly one which meant more exercise.  I told her how healthy she looked - and she certainly did.   We often leave our small dog with her when we go away for a few days and there's nothing she loves more than to take small dog with her on the paper run, and there are several parks nearby where she can let small dog off the leash to roam (which means more walking for her, too).

I know that things will change and that there will be issues to deal with and all of that, and by writing this I'm probably tempting fate very seriously, but for once I thought - just seize the day!  Enjoy the moment!  Be proud and happy!  Carpe Diem, indeed.

Time to lock up the kitchen

By M.H.

The idea of having to lock food in my own house to protect my son who has PWS has always struck me as a particularly dramatic (and upsetting) intervention.  In the early days, when I was just getting used to the idea of PWS, I remember being consistently taken aback each time I heard about this practice.  Knowing that not all families lock food made me wonder which type of family mine would be.  Would locking imply that my son's hyperphagia and/or anxiety were worse than those of others?  

As well as wondering whether or not we would need to lock, I also wondered how I would know when to lock.  Recently, a few months before my son's 12th birthday, the time came.  And, like so much in our PWS journey thus far, it was far less dramatic and far less upsetting than I thought would be the case.  

For a start, my son was the one to ask that the kitchen be locked.  He did so without fuss one day after school. His request was calm and reasonable and delivered in the same tone of voice he uses when asking if he can borrow something or watch TV.  It is true that he had once before gone into the kitchen and taken a bite of his father's unattended meal, but apart from that incident (which he had owned up to immediately), there had been no food stealing from the kitchen (at least not that I was aware of).  Honestly, I would not have suggested locking the doors at this stage had he not asked me to.

I put him off initially.  I told him it was a big step and that although we would be happy to do it if he wanted us to, we should think about it for a few weeks first.  Then I waited to see if he would raise it again.  He did.  A few weeks passed and this time he changed the question slightly to ask when I was going to start locking the doors.  So I did.

In contrast to what I feared, locking the kitchen doesn't feel disrespectful to my son at all.  Paradoxically, it also seems to me that it facilitates his independence rather than limits it.  He requested the action, we responded, and he is happy with the outcome.  

I will admit that it's a bit inconvenient.  For one thing, I have missed several phone calls because I keep accidentally locking my phone in the kitchen. It's also impossible to access our back door without going through the kitchen, which will probably lead to us redesigning our living space.  And I wonder what the grocery delivery man thinks!  But, overall, it works.  No fuss, no drama.  After all, there are far worse things in life than a few locked doors.   

***

I will always remember the look on my daughter's face when she came home from school, aged around 7, and saw a lock that I'd put on our pantry, "Gosh," she said, "what a bright shiny lock!  Did you do that Mum?"   I was completely taken aback as I'd expected a huge fight, and stuttered, "y-y-yes", and she responded, "Oh!  You are clever!"

Ed

 

Work? I could watch it all day!

Witteskindshof workshop

Many people with PWS have jobs - some are voluntary, and some are paid.  Some are repetitive jobs such as packaging, and some are really responsible jobs which are done well and diligently.  I remember visiting a small factory in Germany with a group of conference delegates.  We were shown around the factory by a young woman,  I didn't realise she had PW until someone mentioned it as she was so competent and so beyond the work experience of my own daughter, that I failed to realise that this young woman could handle a blow-torch, solder, and fix things as well as any other person.

When I think about my own daughter's dalliance with the workforce, not a lot comes to mind as the following  will relay.  Not exactly a curriculum vitae, but more an account of jobs that my daughter has held even if only for a day or so and how she managed to get rid of them.  Sadly (in my opinion) what we used to call sheltered workshops have now been abandoned in favour of 'supported employment'.  (If only...)

There was a little job she had in a Salvation Army shop which required her to help sort out the clothes, help put them in the washing machine, and after they'd been ironed, to hang them on hangers as directed by one of the staff.

Unpaid, but a great little job, which, sadly didn't last for a few reasons, not the least of which were the number of items she decided would look much better on her, her friends, and various family members, rather than just be left to hang on a rack.  The main reason, though, was that she resigned because a staff member insisted on re-arranging the coat-hangers after she'd put them the way she thought they should be; according to my daughter.

Then there was a little part-time voluntary job at the SPCA which anyone who loves animals, especially those with PWS, would really love.  She did her best and uncomplainingly cleaned out smelly litter boxes, replaced water bowls,and took dogs for walks (accompanied by a job-coach).  But she resigned because they said she spent too much time cuddling the animals.  

When I say "resigned", I really mean that she loudly proclaimed her thinking on what was right and what was wrong with the way things were done and that she had every right to give the animals a bit of care and affection.

Shortly after this, she decided she would 'take in ironing' and proudly showed me the advertisement she had made to pin on the supermarket notice board.  This job lasted for quite a few months and the caregivers became expert in finishing off the odd load of ironing when the pressure was on.  Of course, it dwindled to an end as she became bored with the whole idea of ironing dozens of men's shirts and the house was strung end to end with laundry.

Then there was a much more specialised job of selling make-up and products on a door-to-door basis.  Booklets were delivered to households and if they wanted to purchase something, it was ordered by my daughter, paid for by the purchaser and the money was transferred to the company.  This required much more attention to detail - as you might imagine - for many, many reasons on, oh, so many levels.  First there was the booklet of products, each and every glossy page held items of great beauty that became "must-haves" and gifts for everyone in her address book.  This meant that in the end, I seemed to be financially supporting the company single-handed as I waded through booklets marked with gifts for family and "can't-live-withouts".    Then, of course, there was the money.  It had to be kept separately until such time as it could be banked.

Now, this was rather like keeping an unlocked alcohol cupboard by the bedside of an alcoholic.  Or leaving a half-eaten block of chocolate in front of a chocoholic, or giving someone a gift and telling them not to unwrap it til their birthday.  And, of course, it all fell to bits as my daughter struggled to work it all out - in spite of all the support from caregivers, and financial instructions from her father.  She "robbed Peter to pay Paul" on a regular basis.  When it came to the debt collector, I couldn't stand it and paid off the debts and she resigned from her position of sales-person.

The next job was just a very simple one.  A paper run that she did twice a week.  This meant a lot of boring folding of junk mail to fit into the second-hand pram she bought from, yes, the Salvation Army, and a lot of walking and wheeling of said pram up and down many streets, putting junk mail full of grocery specials etc into mailboxes.  She was accompanied, of course, by one of her caregivers.  To begin with, the mail run took her an hour and a half.  But, as she became quicker, she managed it in less than an hour.   She got paid for this little job and the money went into her bank. Amusingly, her own letterbox had a sign proclaiming "No Junk Mail".

She would diligently read the pamphlets and ring me to tell me what was on "special" and at what particular supermarket.  She had a field day when there were free samples of cat food in small individual packets and although the great majority did actually get delivered, there were always a few left over for her cat.  Although, of course, we had to learn that lesson the hard way, too, which required a "re-delivery" of said items the next day.

Unfortunately all good things must come to an end and in this case she had a few weeks of ill health and her job was suspended and then ended.

Many people managed to hold down jobs.  I know that because I've seen them as I've travelled all around the world working for PWS.  I've longed for my daughter to be just like them, but she's just not programmed that way and the best I can do is encourage and hope.  One day, who knows, there just might be a job that fits all that work experience.  And, of course, pigs might fly!