Your kids and hard drugs - when to step away

It's been a rough week. A VERY rough week. Regular readers of this blog will be aware of the balance I try to strike between the personal and larger picture. When I first started out, that was partly because I didn't know how members of my family would handle me writing, essentially, about us, so using articles I found in mainstream media that triggered memories of how similar issues had been experienced and handled in my own life seemed like a relatively safe way to travel, maintain an element of anonymity, and preserve the privacy of my immediate family members. It helps that many of said family members aren't online a lot, and would tend not to go looking for something like a blog. No.2 did find this one - because he was following my other blog - http://bookkunkiesanonymous.blogspot.com.au/ - and he then kept quiet about finding it for quite some time before owning up and letting me know he thought it was pretty good!

It's No.2 who brings me back to posting because I'm struggling to deal with the latest thing in his life. I wasn't expecting it, so it's been a huge shock, and by coincidence, the Sun Herald published a two page spread today on the topic that gave me some very to the point information that both made some sense of what I'd experienced with him last week, and highlighted what a different position I'm in compared to the parents of the kids in the article. You can read the full article HERE.

No.2 has had a difficult year. Things were, seemingly, beautifully on track for him. He had a good job, an apartment, a slowly steadying social life, and he was in regular contact with me. He lives interstate, so I don't see him all that often, but we'd chat on Facebook, text and call each other, and I'd try and get to his hometown at least a couple of times a year. Illness, on my part, has been a fly in the ointment as far as travel has been concerned more recently, so that's been a bit limited, but he was aware of the reasons. Then, at the end of last year, the wheels fell off. His work contract came to an end, and though a series of strange and still largely unexplained events, he became homeless, was on the streets, in and out of a boarding house his father paid for, and finally ended up admitted to the psych ward of a large city hospital, having cut off contact with me. He was diagnosed with Borderline Personality Disorder. The consultant psychiatrist at the hospital took him on as a public patient. Plans were made for group therapy too. He was there three weeks; complicated by his homeless state, they held him for longer than usual.

The hospital found him a room in a facility for people with mental health issues and drug use - NOT a nice place. But, a roof, and meals. I thought he'd hit bottom, and with ongoing therapy, assistance from various parts of the system, he could start to rebuild. It was a frustrating six months for me - No.2 didn't seem to be getting far. Didn't like his shrink, couldn't face looking for work while living at the hostel, wouldn't take up any of the training offers I offered to fund to help him get work (simple things - barista training, bar and waiting, etc), didn't appear to be taking up any of the offers of support that were available through the local mental health unit - he said that they weren't interested, didn't answer calls, etc...I have to question that now, in the light of recent events. 

Then a friend stretched out a hand, and invited him to move into her spare room. When her relationship broke down, she, No.2 and another boy found a place and made a new home, complete with a cat. So, no reason to not look for work. But no work eventuated. More excuses. I was starting to feel very frustrated, because at 23, there's a limit to what I can do for him - it has to be his efforts. Then, two weeks ago, the other boy had a meltdown and ended up in hospital. No.2 and his housemate were, understandably, considerably thrown. His housemate works, and just put her head down and got on with it. No.2 disappeared. Initially, I didn't twig - I'd not heard from him for a few days, but that can happen, and he's not always great about responding straight away to texts. Then I found the missed call from very late one night after I'd gone to bed, from an unlisted number, and a frisson of anxiety hit. Then later that day, a message via Facebook, using the hospital wifi (because that's where he was) from a very fragile No.2, who'd been picked up high, and apparently had no memory of where he'd been or what had happened in the intervening four days. I phoned a friend who said she'd collect him when he was discharged, because during that time, he'd lost everything - phone, keys, ID and money - and his housemate wouldn't be home from work til late. He agreed to this, and thanked me for stepping in. Only by the time she got there, he'd vanished. I called the police, who activated a missing persons file. He showed up of his own volition two days later, again high.

I travelled there the next weekend, at his housemate's request. She said she could no longer have him in the house if drugs were part of the picture - which I supported. She was still prepared to give him the four weeks notice that they'd all agreed on from the beginning if someone was to leave the house. Over the course of the day though, that changed. He was different. We were seeing behaviour in him that we'd never seen before. Even at his most down and feral, I'd never seen such cavalier and brutal lack of concern in him. He never even considered apologising to either of us for the worry of the previous week. There was much bravado, much defiance, and there was NO getting through to him how much we cared, how worried we were, and how difficult we were finding it to reach him - his response was that he just didn't care, only he wasn't that polite. 

No.2 is on Ice. It is one of the most awful drugs that's currently out there. It's highly addictive. It is appallingly destructive. In the article I read today in the Sun Herald, there was a quote that jumped out from the page at me describing some of the effects of the drug, '...all emotional empathy and attachment to loved ones disappeared out the window'. And that's exactly what we were on the receiving of. He was like a stranger. An extremely hostile stranger. In the end, his housemate said she didn't want him there any more, the four weeks weren't going to happen, and could he just leave. I dropped him back at the hospital, hoping he'd access help here, but he walked out again as soon as he knew I was gone. 

The mental health team from the organisation who have him on their books have tried to be in contact with him via the phone they gave him when they saw him at the house before I arrived. He won't talk to them. He's blocked me from Facebook, and won't answer my messages. The team suggested reporting him missing again, so I did. The police managed to locate him this time, and let me know, and that was followed by an extremely hostile text from him to tell me to 'bugger off'. The police had no reason to pick him up, so having spoken with him, left him where he was.

My son is 23. He's a very bright and talented individual. He has many great qualities and inherent talents. He is, quite literally, one of those people who could do just about anything he chooses to do. He's made a choice that I find impossible to understand, to blot out his difficulties with a dangerous, illegal drug, which could kill him. It has already substantially altered who he is. I don't know where he's staying. I don't know how he's getting money. Unless he gets back on track with the various government agencies he's listed with, his government support will be cut off. 

The thing is, at this point, there is NOTHING I can do. In the article, the concerns - rightly so - are for the kids who are getting into this drug at frighteningly young ages. The one spark of hope there is that they're young enough for adults to be able to step in and, initially, force some changes and help get them into programs. I can't do that with/for No.2. He's 23. He's an adult. He makes his own choices. And I have to, for my own sake, step back and accept that I can't control that. It breaks my heart. I love this boy. I'm appalled by this new situation. I am powerless to stop it. All that will happen if I push - as I discovered - is that he will be abusive. That does neither of us any good. His father has bailed. This is too hard. I don't need him to explain how hard it is. I was in the middle of it, trying desperately to rescue something from a situation that was, already, out of my control.

Kids, cafes, restaurants and other social occasions

A friend of mine had one of those experiences the other day... She was at a cafe, doing some work, and was startled by a shrill whistle that made everyone jump. She turned and yelled,"QUIET!" - one of those involuntary reactions due to the shock of the sudden noise. The perpetrator was a two year old child with a toy whistle, and the mother of said child then appealed to the rest of the patrons, complaining that someone had ticked off her child. My friend's quiet comment that perhaps noisy toys weren't the most appropriate toys for that environment brought on a barrage from the mother, who took the comment to mean that she was a bad parent and then went on to accuse my friend of having something wrong with her before storming out with her child. The incident, understandably, left my friend pretty rattled, despite being supported by the cafe owner. She later posted about it on Facebook, including in her post comments and queries about why things are so different now to when she (and I for that matter, given I'm older than she is) were small children, and the thread has grown to some 60-odd comments at the time of writing. 

Predictably, the comments range from support for my friend to those suggesting any number of reasons why that child could have been noisy, or why the parent allowed noisy behaviour in a cafe environment. One went so far as to suggest that by yelling, my friend had 'assaulted' the child. There were comments that spoke to special needs, the inability of very young children to conform to social norms, the sense of 'entitlement' that mothers of young children have that lead to incidents like this, and so on. 

Some way into the thread was a link to an article about a cafe owner in Newcastle, a regional city north of Sydney, who, in response to a recent negative review of her cafe, posted the following on her business Facebook page:

Are we child friendly? If you are looking for a cafe with a children’s menu, baby chinos, a play area, lounges for your children to jump on, vast space for your prams, an area for your children to run rampant, and annoy other customers, while you are oblivious to them — then the short answer is No, we are not child friendly. HOWEVER, if you would like to bring your children here and they are happy to sit at a table with you, while you enjoy a coffee, and are well behaved, please come in. Otherwise, there are plenty of places that are specifically designed to entertain your children.

 Again, predictably, there was a huge response, much of it accusing the cafe owner of arrogance and attacking of parents. But there was also huge support for the owner, herself a sole parent, who has put everything she can into creating the cafe, which is in a business precinct of Newcastle, to support her family. In response she is quoted as saying,

I have been subjected to children emptying salt and pepper shakers into my fireplaces, parents changing nappies on my lounges, kids grinding their own food into my carpet, parents sitting babies in nappies in the middle of dining tables, kids running around the cafe like it’s a formula 1 track [sic], jumping on the furniture, screaming - just for fun - not pain, and encouraged by their parents, upsetting the rest of the customers and I’d really just had enough.
When I have to stand there and watch people disrespect and damage MY belongings and property, it breaks a piece of my heart every time. Some will agree with my stance, some will not, but it’s my stance for my business.

The original post has since been deleted from the cafe's Facebook page, but there is a huge slew of comments at the end of the newspaper article, in which the balance comes down heavily on the side of the cafe owner. 

And then, there's the other side of the situation - the parents of small children. There were a range of comments on both threads, and the comments from the reviewer of the Newcastle cafe. There were the predictable anecdotes of different people's experiences with their own children, and also the cry that parents should be able to have cafe time like everyone else when their children were small... 

My experiences with my own children were completely different with each of them. No.1 was one of those easy kids who learned early to do things neatly and properly. He had his days, of course, when nothing was going to happen the way I needed it to, but from a very early age, he could be taken to cafes and restaurants and be sat up at the table with everyone else. He ate quietly and neatly, and was happy to settle with a book or his blanky while the adults around him went on with their meals. I don't know how much the fact that he was the first baby in our circle of friends had to do with it, so that he was the only small child present at these odd occasions, or that it was largely just his disposition. 

One thing that having more than one child teaches you in a big hurry is to not assume that you have it all sorted when the next one comes along! No.2 was completely different. He was a busy baby. He didn't have the long relaxed feeds that No.1 had indulged in. He didn't sleep for hours between. He wanted to be up and in the middle of things. Once he was mobile, he didn't stay in one spot for long, ever. He broke several baby plates by tipping them off the tray of his high chair the instant he'd had enough of what was in them - whether the food was finished or not. And then, he wanted down - immediately. I have nightmare memories of a trip away when he'd been given chocolate prior to a nap - the sweet little three year old I'd put to sleep woke up a hyperactive monster with all that caffeine and sugar in his system. The worst of it was that we were scheduled to be at a dinner that evening with the rest of the group we were travelling with. It was an appalling evening. He was climbing the walls, and the only thing we could do in the end was take him back to the hotel. It was years before he was prepared to sit still in cafes, and we rarely took him out to eat, because I wasn't prepared to put anyone through the stress of an outing - myself, him, or other people in venues.

My view - which I didn't have to think through very hard - was that unless my children were capable of sitting quietly at a table to eat, they weren't ready to be doing that away from home, and that it was my job to teach them that. Cafes and restaurants are public places, and there are acceptable codes of behaviour for being in them that apply to everyone, and children shouldn't be exempted from that. It's not their right, as small children, to run amok as they might at home, when it means disturbing other people who are attending the venue. At home, if they misbehaved at the table, mine were sent to their rooms, and their meal was forfeit. It was about a time and a place for things. Mealtimes were for sitting still, learning to be part of a conversation, learning about different foods (there's a whole other post there, so I won't digress now!) and practicing manners that would eventually take them into adulthood. Conversely, picnics in the park were for gobbling down a quick sandwich before roaring off to play on the swings. 

One thing that came through loud and clear in many of the pro-kids comments on my friend's thread and the newspaper article was the sense that young children can't control their behaviour, that it's wrong to expect them to be able to, and that it's everyone's right - theirs included - to be able to be in those environments and other people should just understand that. I have to say, from my own experience, that that's a load of bollocks. 

WHY should a cafe owner or other patrons have to put up with a child rampaging around what is, essentially, a dining space? Apart from anything else, there are safety aspects that no one seems to have picked up on. What if, due to the whistle incident at my friend's cafe, it had been one of the wait staff who'd jumped while carrying hot coffees...? They could have gone everywhere. I've nearly tripped over small kids who've appeared under my feet unexpectedly while I've been wending my way to a table. If I could pack quiet activities that my children had learned were part and parcel of an expected package of behaviour so that they had something quiet to occupy them, why can't other people? If I could teach my children in the first place that public venues like cafes required them to be considerate of the other patrons, why can't everyone else? It's not rocket science. Neither is it imposing something unreasonable on the child. 

I don't think that parents of small children shouldn't go to cafes. As the owner of the Newcastle cafe stated - she had no issue with having children in her cafe if they could stay seated, and not make a horrendous noise or mess. I'm with her. If you stop to think for a moment about how you'd feel if someone else's child was in your house and started upending salt and pepper shakers all over your table, or squashing food into your chairs, then the parallel becomes pretty obvious. It's not about the venue, or even about the other patrons. It's about what we teach our children. They're only little and at home with us for a very short time, after which they have to go out into the world and survive on their own. That means they have to be able to behave appropriately in a plethora of situations, and the earlier they start learning that, the kinder it is for them. Cafe trips - which can be short bites, after all - can be an enormously useful learning tool that don't have to turn into nightmares for parents, children, cafe owners or bystanders. Letting kids run rampant and unsupervised anywhere is just lazy, on the part of the parents, and not useful for anyone, particularly the children.

I had to come back to add a quick update - the story is growing. An English journalist has taken the story up in The Guardian - read the article HERE. The article is pretty straightforward. It's the comments - huge - that make for some very interesting reading. A lot of them seemed to me to be pretty extreme - and, more importantly, miss the basic point that the issue at the bottom of it all (as it appears to me) is the lack of consideration for others and basic manners that are absent in the case of some of the incidents that prompted me to write this post. NO ONE is talking about that - it's just lots of seemingly righteous indignation about the lack, or excess, of rights of today's parents of small children... Something is a bit out of balance there, methinks.

Parenting when you have a chronic illness

May is Arthritis awareness month in Australia. It's also MS, Lupus, Fibromyalgia and a host of other auto-immune diseases awareness month. Personally, I think it's reached a point where we have so many coloured ribbons, wrist bands and pins that most people aren't really registering any particular ones unless there is a personal connection, so I'm not sure just how much actual awareness there is of these different days, months, or years any more. Certainly, in Australia, auto immune arthritis - a major and debilitating arthritis that comes hand in hand with Rheumatoid Arthritis (NOT the kind your granny has...that's osteo-arthritis) is not well understood. Our TV commercials are flooded with ads for the latest miracle 'cures' for arthritis. Now and again, I get a text message or call from some kind and well meaning friend or family member to watch A Current Affair or some like programme, because some research about a new 'cure' is being aired. The current madness is the proliferation of websites and Facebook pages that tout the latest miracle diet that will cure it...

There is NO cure for Rheumatoid Arthritis. At this point in time, a diagnosis of RA means you have it for life.

I have RA. I was diagnosed about a year or so after No. 2 was born. I had gone back to work when he was 6 months old, as a chef in a large day care centre (a job I took just before I discovered I was pregnant because I was burning out fast in my previous chef job). I had a chorus contract with the local opera company for an opera being performed in a big arts festival, so the schedule was very heavy. I was still breast feeding, and this child didn't have even the remotest interest in solid foods. When I started to struggle, feeling very ill and achey, having difficulties with nappy pins, suddenly finding that the large knife I thought I'd firmly grasped had flown across the work kitchen, and a few dropped trays of food later, I headed to the doctor, feeling as if maybe it was more than just being a mother of a nursing baby trying to manage a household, an older child and two jobs... My GP fed me the only anti-inflammatory drugs and pain killers I could safely take while breastfeeding, and gave me a referral to a rheumatologist. Things got a little bit complicated and drawn out after that because I've never shown a positive rheumatoid factor - a marker in blood tests that is used to determine a diagnosis. Anyway, long story short, he diagnosed me with sero-neg RA, and that job came to an end as it was aggravating the situation. I had to wean No. 2 - a torturous experience, as neither of us was ready for that - so I could start some more serious drugs, and a new life stretched out ahead of me. 

At the time, it looked forbiddingly bleak. My then husband didn't handle it all that well. Illness wasn't one of his 'things'. I got very sick from the first drugs they tried. The strength of the NSAIDs (non-steroidal anti-inflammatory drugs) was steadily increased until they, in conjunction with some heavy duty prescription pain killers, started to give some relief. Then the rheumatologist wanted to start me on Methotrexate (MXT) or gold injections - the two bigger drugs of that era. I read through the potential side effects - long and short term - and was horrified. MXT is a chemo drug, used to fight some types of cancer - used in smaller doses for RA. I refused to take it. He agreed, reluctantly, saying there was no point prescribing something I really didn't want to take, and also, pain aside, there wasn't enough happening in my blood tests to warrant it medically. Things stabilised more or less. I had a huge full body flare that put me bed for six weeks when No. 2 was nearly 2. My mother and aunt arrived to manage the house so No. 2's father could manage his shift work job. Physically, I was kind of managing. Emotionally, not so well, and eventually had a breakdown. That was the last straw for my marriage, which crumbled at that point, so by the time No. 2 was 4, I was on my own with him and No.1, who was not quite 11. 

Very fortunately, my RA was quite slow moving. Over the next eighteen years, it got worse, but very, very slowly. I had ups and downs, flares, losses, pain, constant use of NSAIDs and increasing use of analgesia. But I was so scared of the side effects of the stronger drugs, I put myself into GP care so I wouldn't have to argue with the specialist all the time.

However, it was bad enough for parenting to become a whole new ball game. No.1 could remember me pre-RA, and struggled initially to deal with a mother who couldn't always run around with him as much as I had. I got a lot of, "But you're ALWAYS tired now...", which was hard to hear. I was. But I couldn't do much about it. Pain is exhausting. No. 2 knew no different. He was a bigger, heavier baby than No.1, so from the get go, picking him up and carrying him around was harder. He had to learn from a very early age, to get himself places - and he did too, rolling all over the floor from about 7 months. He crawled early, and was walking much earlier than No.1. And walking much MORE than No.1 did, because it wasn't a simple case of picking him up and carrying him if he got tired and we weren't using the stroller - he HAD to keep walking. I made games of picking up in their bedrooms, so that they learned to do it in a fun way. I had them bringing their own clothes to the laundry basket. I put chairs in the kitchen so they could reach the sink and learn to do their own dishes. We still did lots of play things together - one memory both have is the wonderful tents we made with sheets and the dining table, full of cushions and rugs, where we could lay and read stories, and they could play out all sorts of fantasies and keep themselves occupied when it was hard for me to get down there. 

I lot of people I know through forums online, and groups on Facebook, who have younger children still at home worry so much about what their illness will do to their kids. How much they might miss out or lose by having a sick parent. What they don't have to miss out on - which many kids do these days - is TIME with us. A lot of us are at home. These diseases can make it very difficult to hold down full time jobs with regular hours, because the diseases themselves don't behave well enough to make keeping to a regular schedule that simple. Getting stuff done around the house WITH your kids, which is what I did - with the bait being a game or treat, or some TV (my kids didn't get a lot of TV so that was a HUGE treat) when the jobs were done - meant that there was always something to be done together at any time of the day, and we could usually find a way to make it fun. No. 2 learned to count handing me pegs when we hung the washing out. He learned colours matching up socks when we brought it in to put away. He learned lots of maths learning to cook. I have a version of my muffin recipe written out in big print and simplified for him to make from the time he insisted on doing it "all by myself" - he was five. No.1 could put a whole meal on the table by himself by the time he was 12. They both learned patience, and having to deal with things being cancelled sometimes because I wasn't well enough. No.1 would put on hugely entertaining performances for me at the park when we went, because he felt, I think, that he had to make up for me not being on the slippery dip with him - a few falls and subsequent injuries clued me in very quickly about the ramifications of injuries to a systemically arthritic body.

These days, at 29 and almost 23, they are very self sufficient young men, who are capable of running their own households very well. They can shop and cook, clean, wash, do basic repairs on clothes, and No.1 irons a shirt better than anyone I know (a little help from being a RAAF cadet there...!). They have very strongly empathetic personalities. They 'get' it, when someone is ill. I don't see any scarring in them that I could lay at the feet of my RA. Other things perhaps - No.1 declares that I scarred him for life making him eat mushrooms as a small child...but you know what, I'm sure a spot of therapy could fix that! 

Compared to a lot of the young people I see around me today who have had far more done for them than my two did, they appear to me to be much better adjusted and prepared for real life. I'm not alone in seeing this as a phenomena - it's not just my skewed view as their mother. Hunting around online - since there's a dearth of actual press articles on the topic, which is what I usually use as a springboard for these posts - I found an Australian parenting site that had an excellent page on this very topic. You can read what that has to say HERE. It's specific to 'disability' but it holds true for people with chronic illness, as the nature of these diseases can result in considerable disability, while not being injury related as the 'read my story' example is.

Unfortunately for me, after some years of what I think must have been some kind of spontaneous remission, my RA is back with a vengeance. I hate to think how I'd have coped when the boys were little if it had been as severe as it is now. I'm on the 'grown-up' drugs now - I have no choice. It was that, or give up on walking. What I do know though, is that I wouldn't have done anything with them any differently. I'd have needed, even more than I did then, for them to be fully participating members of the household at whatever level they could manage at different ages. That's so for any sole parent, and it's certainly so when that parent has a disability or a chronic illness, and it still stands if there's a supportive partner there. Children are remarkably adaptable creatures. Particularly when they're young. They are incredibly accepting. They also LOVE being given 'grown up' jobs. 

One of my very favourite stories (which I may have shared on this blog before, I can't remember) about No. 2 was the time he insisted he could do ALL a load of washing - from beginning to end - by himself. He got it all sorted, he got it loaded, got the soap in, got it running and then choofed off to do something else while the machine went through the cycle. When it finished, he put his small chair up against the machine to get it all out and into the basket. Hearing a funny noise, I went to peep, and he was almost upside down in the tub, fishing out the little things from the bottom with a pair of tongs from the kitchen because he couldn't reach the bottom of the machine - entirely his idea. He did ask for help to carry the basket out to the line, and then dismissed me again, before dragging one of the outdoor setting benches underneath the line so he could reach up to peg things on. Up and down he stepped until it was all hanging. And again, when he brought it all back in later - neatly folded into the basket to save on ironing... He was 6. And walked SO tall the rest of that day because of what he'd achieved. So, had my RA been this bad back then, I think the three of us would have been just fine.

Don't ever underestimate your children and what they're old enough or big enough to do. They'll surprise you every day. And they'll teach you something every day. And they'll learn things every day that they'll take into their own lives, and possibly even thank you for the opportunity you gave them. Mine did.

For readers wanting a really good blog that is RA based - and has oodles about the day to day issues of living with the disease, including parenting, I recommend Arthritic Chick.