How do I say no, without saying no?

At risk of being overwhelmingly sarcastic, I find myself cheering on the people who gaily sail through life without letting anything get to them.   You know the ones, with the silver spoon of life in their mouths.  Not necessarily rich, or even moderately wealthy, but some comfortable ones.   Those without the frown lines from wondering how to pay the bills, or juggle multiple school pick ups at the same time. 

The ones who pull back from disaster without a scrape or a worry.  Then there are the other silver spooners.  Some of them aren’t so lucky money wise but nothing ever affects them.  They carry on gaily doing whatever it is that they want to do, and without any regard to anyone else at all.

I’ve got a couple of energy sucking silver spooners in my life around me, but one has had the tables turned.

I’d class my dad as a silver spooner.  He never had much money, but he also never had any conscience.  Never cared about letting people down and I spent several decades of my life not even knowing if he was alive or dead.  I hardly know him at all.

He’s now hit the octo mark and has cancer.  He’s started his chemotherapy and all of a sudden I am expected to be transformed into the dutiful, caring, doting daughter who will spend every waking hour seeing to the needs of her devoted father (or so the medical profession seem to think).

Nurses nodded at me as if I will be able to do his shopping and I could hear them shake their head as they walked away when I said that actually, no, I won’t be there to do that.  He lives an hour and a half away by car and I have 3 adopted children, 4 animals and I already have my mother living with us to look after.  Looking after him personally is never going to be practical.  I’m happy to help him sort out his finances and keep him on the straight and narrow, but I’ll never be the daughter running in the car at the slightest whim.

He’s forgotten most of the fact that he wasn’t interested in me until I reached over four decades, so I’m not sure how to feel about that, or the daily phone calls needing reassurance, or his need to have me as a daughter now.

I know he wants me to invite him to Christmas dinner and I know he’ll spend it alone in his miserable chemotheraputic aftermath, and I know I shouldn’t feel guilty, but I do.   I know how callous it also makes me sound, but immediate family has to come first.

He regularly mentions how he’ll spend his day alone, as his occasional lady friend will soon head off to exotic climes with her family and he’s becoming more and more isolated and lonely.  That doesn’t help with my guilt levels, but I have to stick to what exists.  I know he doesn’t remember much of the past, and his guilt has kicked in now with age, but saying no without saying no is actually one of the hardest things I have had to do for a long time.

I’m not quite sure why I’m blogging this, but I suspect I’ll feel much better about it after I do.

Toxic Friends

Some friends are really toxic.

You know the ones.

• They hum and haw and say they will, then they won't, but that's not the problem.
• They only ever ask about themselves and never ask about you.  
• They want to pass on the gossip, but never share anything about themselves.

How insulting is it when a friend tells you a lie, and you know them well enough to know they are telling a lie?    The glory hunters, the back peddlers, the interfering busybodies.

What is this all about?

I've lost friends recently and I know why.  Eldest did something stupid at school.  I'm not going to share what he did as it could come back to bite me on the bum.  It's enough to say he got excluded for it, but the exclusion was overturned as it was going from the ridiculous to the sublime.  

I had warned them that he would do things like that if he was unsupported and they refused to support him. That's not his problem, or mine, it's theirs.

Littlest has a sort of problem with a boy at school, and it's related to heresay about the scrape eldest got himself into. Arms and legs were added and it's got out of proportion.

With all of that and many local parents shunning me in case I have raised thugs, it's hard to know where to fit in.  The adoption thing follows my kids and they are often bullied and teased about us not being their "real parents."

I don't expect my own friends to be so self centred.

It's only recently that I've realised that one or two of my friends are just as toxic as some of the local mums are.  Ok, I have a whinge occasionally in real life but I save most of that for a splurge online when I need to.   I can't even use Scottish Mum Blog as they all know about it now.  They don't know about this one though, and none of them tweet.  

Toxic friends aren't our friends, they draw our energy and our patience.  I sit and listen to people with far less issues with their kids moan on, while they never reciprocate about mine.   I offer advice and support and I feel that some of them are like the leeches of old, sapping me for what I know and what I can do to help them, but god forbid they should have to listen to any of my own struggles with special needs adoption.

I even see the glaze in some of their eyes now and again when they realise what they've just said, and who they said it to.  We all make mistakes and say or do things that we wished we hadn't, but telling me a lie about something to do with me, to my face, just leaves me speechless. 

I never challenge that.  Some of these people would take it as a reason to beat themselves up for weeks over, so I listen, silently seethe, and bide my time until I can escape.

What is the post for, it's really a rant.  Perhaps this should be called the rant blog...  It's definitely the red maze for a reason.  

Elder care rears it's head again.  Now I wouldn't be adverse to doing it if he'd ever been a dad in my life, but he hasn't.  His getting back in touch with me means that he seems to think I will be everlasting the dutiful daughter who will somehow reciprocate his newly found liking for his decades old spawn.

Added to the fact that he lives about 100 miles away and seems to be heading down the path of dementia, I am finding him very hard work.

He gets things wrong, he can't remember what he's doing and quite frankly, he's impinging on my life to such an extent that I am starting to resent him.  His ramping up of anxiety is also beginning to stress me out as he cannot just take what people say at face value.

He told me he had an op on Monday, so I booked a hotel on Sunday night.  He asked me to come to his and spend the night there, and although he is my dad, I'm not comfortable with that.  With bag packed to leave today, I asked him last night to read through the letter over the phone to me, and it's on Thursday.  That means I have to leave on Wed night and miss halloween with the kids.

On top of that, the hotel is almost double the price which is not something I can think about lightly at this time of year as it just isn't in the budget.

His girlfriends sounds thoroughly fed up with him, and I can fully see why.  Perhaps I am being unjustly unfair to him, and a night away from the kids in a hotel by myself would be lovely if it wasn't for the mega early morning to leave it at 6 am ish to pick him up and drive him to the hospital for 7.30, as he lives in the middle of nowhere.

Either that or leave here at 4.30 am to get down there.  Actually, that probably is the best option driving through the night before traffic starts.

I really don't want to go down this route as with special needs, 3 adopted kids and my mother who already lives with us, I have more than enough on my plate.  Where to go next, I have no idea.

Smash that netbook.

My elderly father is still driving me nuts.  I didn't know him as a child, and you can count how many times I've met him since I was about 8 on two hands.  Now in his eighties, the Octo has decided that we are a family again.

The resulting decision sees my telephone ring about 10 times a day sometimes.  The kids are getting fed up of it, the man is getting fed up of it, and it interferes with my daily life enormously

Sometimes he is on the phone for an hour or more at a time.

It is almost ALWAYS to do with his netbook.  The one he can't figure out how to use.  I go over and over and over the same things and he still can't quite get it.

He says he's grateful for the netbook bringing us back together as a family.

I want to smash that netbook SOOO BADLY.

And since I can't do that, will somebody please buy him a bigger screen.

Filling the void and losing friends.

I've lost another friend.  It happened slowly, but I didn't see it creeping up on me.  The mum is a special needs mum, but she has two parents to one child, and their son has young grandparents.

I'm used to parents of neurotypicals slowly moving off the scene when I can't manage to find a babysitter and have to cancel something yet again.  I always explain why, and with special needs, there isn't any way I can get replacement child care easily. 

It's not as if I can ask the neighbours teenagers to look after the kids while they're sleeping. Babysitters have to be able to cope with the onslaught of a possible outburst from a tired and unmedicated child if he wakes up and loses the plot.  He's not a little toddler they can calm, sing to, or shoogle to sleep again.

It's not an easy ask.

Grandparents are thin on the ground here and there is really just my mum, who isn't able to watch all three of mine so that we can go out together.  The long shot is that unless the man can get home, I'm generally stuffed.

It doesn't go down well if you have to cancel at short notice. 

People take it personally when they seem to think we just don't want to know.  They don't really get it that we'd 'love' to be with them, having a glass of wine and chit chatting like regular adults do.

We can tell them until they're blue in the face, but they still take offence.

I just shouldn't commit to things.

I don't know why I really bother to try, but perhaps some of me is hoping that sometime, somehow, my life will return to what it was pre foetal alcohol in the family.

It will get better, I know it will, but in the meantime, the friend is not answering her phone.  She's stopped texting and didn't take me on when I e-mailed her. 

I'd be getting into the realms of stalking if I keep trying to contact her, so it stops now, and I'll just give it up and move on.

Somehow it doesn't feel like a loss, it feels like a bit of a relief.  Maybe that's how it gets.  The relief that I don't have to bother with someone else's problems.  Perhaps I take that on board too much.

I think the loss of this friend is no bad thing.

Does that make me a monster?
 

Fatherhood

My father is elderly.  He is in his 80's and struggling with his short term memory.  He has a girlfriend of about 4 years or so, who is independently well off, where my father is rather short of the readies.

She's been quite good to him over the years, but he won't go or do anything that means he can't pay for it himself.  This situation often leaves them at loggerheads as she has said she'll pay a few times.

At the moment, they are in an "off" period, with her flouncing off on holiday, while he seethes at her supposed fling with another octogenarian in the village.  They're both as bad as each other as far as this goes on, but at the moment, I think they are more heading for the "off" permanency as his memory seems to be stuck on a short term loop that is bearing her a grudge for some imagined discretion.

On top of this, she is really switched on money wise and he bought her a netbook for her xmas a couple of years ago.  She never used it as her son bought her a Mac.  My dad decided to go get himself online, and she persuaded him to buy the netbook off her, which means the skint dude effectively paid for the same netbook twice.

I've no gripe with this as I told him not to, and to please her, he did it.  He's a victim of his own inability to make or take decisions of his own.

The thing is, that he's now determined to use something his brain won't let him use.

BT have taken over his screen to reset what he's done more times than I can believe they have been so patient for.  I bet they regret the day he signed up for broadband, but I really can't complain as they have been rather good with him and so far, have kept trying to sort out what he does.

Trying to set him up on google for e-mail, to make it easier than BT, he found it impossible to be able to type in an email and a password.  After 3 hours, we finally got past the login box, and then he couldn't work out how to take the next step.  At this point, I'd had enough.

He says he only wants to send e-mail, but if he can't ever figure out how to log into e-mail, it isn't ever going to happen.

He's not fit to be living where he is, but it's his life, and nothing to do with me.  I have to keep reminding myself that what he wants is none of my business.

He was never a dad to me apart from giving me my surname, so why it should bother me now, I have no idea.   He's forgotten all he did in the past, and I have a hard time getting past it all.  He wasn't a nice man when he was young.  Not violent, but a tongue that could peel an orange.

I have a disabled child and my mother at home, along with two other children who struggle, a blind dog, and some health issues of my own.  I know he is not my responsibility as he has never been in my life until recently when his on again off again girlfriend made him get in touch.

So why does it make me feel so bleeding guilty?

Silent Sunday 02/092012

A difficult morning.

Mornings are usually quite bad for children with mental disabilities.  If they take drugs to help regulate their anxieties, they are usually without anything in their systems to help them when they wake up.

If anyone, and I mean anyone annoys them, they are likely to blow up.  Actually, they can blow up without anyone annoying them, but any raised voice, firm tone, or wrong step can make them completely lose their ability to control behaviour.

I'd love to see people try using Jo Frost style stern waggy finger on these children pre-meds.  They'd likely get their waggy fingers bitten off for the audacity of being in any way negative at all.

This morning, faced with the school bus being 15 minutes late was enough to put Stressy Boy into a meltdown of epicness.

I'd also forgotten to lock the front door and slip the key into my back pocket when Mr Teen Boy left to catch his school bus.

Sadly, the result was the car getting a kicking, the garage door taking a hit, and when I got hold of him to take him inside, he managed to get out of my hold.  The kitchen units took a bit of a bashing, and I am completely surprised that they actually held up and didn't smash.  I do have to say that these kitchen units have been very Stressy Boy proof thankfully.

Getting angry with him would only be likely to get something else of mine broken as he took it out on anything that I would treasure.  The only way to stop him was to use my weight to get him to sit down on the floor until he calmed down.

No amount of reasoning, parental "behaviour programming" or positive reward is going to change the path of the outcome of this type of meltdown.

I'm not one of those under trained and lacking in knowledge of what will cause stressy kids and what won't.  I don't have a Stressy Boy who's only fault is that their mum doesn't love them enough.  I have a Stressy Boy because his birth mum made him that way and his brain doesn't work in the same way that ours does.

I've breathed a sign of relief now that he is off to school, and just one more to get ready for the school gates.

Look below the surface before judging.

It's actually quite amazing how disagreeing with some well known bloggers about their small mindedness when it comes to disability should make me such an ostracised character in those smaller circles.

I know that there really is nothing to worry about by the fact that people seem to think it's ok to jump right down the throat of anyone who seems even remotely different from anyone else, but how that can possibly be sensible, fun, or worth a full day of debate and angst is completely against my better nature.

I don't miss the Twitter conversations with those who were vociferous in calling a child they don't know lots of names and also call the parents all sorts of bad for having the audacity to have an issue that nobody really knew existed at all.

I resisted blogging about this on the blog where I am more well known, as I don't think that standing up for the unknown family did me any favours at all.

Should I care?

In this space, I can say what I like, but on the other one, I have to be more politically correct and say the right things.  It shouldn't be like that, but it is.

My own special needs child who needs both constant supervision and is difficult to live with could well have me responsible for doing something that I shouldn't.

This post is pretty much dedicated to the small minded of our population who automatically assume that just because a child is badly behaved and the mother is frazzled, that there could well be far more going on below the surface that you realise.

Please look below the surface before judging.

What is Foetal Alcohol Syndrome?

Most of you will have absolutely no idea what Foetal Alcohol Syndrome is, but let me tell you it destroys lives, over and over and over.

Foetal Alcohol Syndrome (Fetal Alcohol Syndrome in the US) or FAS is simply caused when a pregnant mother drinks alcohol.

The alcohol passes to the baby through the umbilical cord and the foetus is not capable of dealing with the alcohol it has received.

Nobody knows how much or how little will affect any one child.

In short, a baby whose brain cannot take the alcohol, will literally be fried to a level where developmental milestones will be impaired.

Drinkers take a chance. They might be lucky, but they might not be.

What kind of a risk is that to take with a growing baby?

I believe a lot of FAS children are incorrectly diagnosed with other disorders because parents don't want to admit that the glass of wine they had every night at dinner might have been too much for their child's brain to cope with.

FAS is the more definitive version of the condition. At this level, there are usually quite severe symptoms with possible facial signs that the child has been affected.

The baby might be small and not developing properly.

As they grow, they may sit unresponsive, or they could become at the very extremes of hyperactivity, with absolutely zero ability to self regulate behaviour.

FAE (Foetal Alcohol Effect) is the milder form. I say milder, but really, it's devastating for the child.

Their brains will struggle with short term memory recall.

They may struggle to understand concepts, to comprehend deep meanings to things and may take things literally (in a similar way that Autistic children do).

They may have sugar cravings, or be hyperactive, get unrealistically angry for no apparent reason, and have difficult controlling their temper.

Would you want to take the risk with a baby on the way?

Melaina from Transatlantic Blonde put it succinctly a couple of years ago with this statement.

"there was never a baby born with foetal alcohol to a mother who didn't drink alcohol."

I will be writing much much more about this in the near future.

Breakages as a result of kiddie disability frustration.

Living with a child with special needs ends up costing a lot of money with breakages and damage to the house and garden.   Some of you might suck in breath in horror, but others will know exactly what I am saying.  This isn't as a result of the failure of a parent.  We've still to do the washing, ironing, cooking, homework and fit in time for other kids too.

When our kids go to respite or care, they have people with them ALL the time.  Sadly, at home, that is neither practical or possible, but we do as much as we can to have our eyes on them all the time.

Unfortunately, the human body needs to be eliminated occasionally, and it's not appropriate to take a nearly teenage boy into the loo with you, so yes, damage happens.

As part of an ongoing scenario, I'm going to add up the things that have been broken over the previous months to show you how costs spiral when you are living with mental disability in kids.

A complete ongoing tally for the year might actually prove to be quite scary, as a fair few things end up getting broken.

This year, I'll only include the biggies so far and what it would cost to replace what has been damaged :

Brothers iPod Touch:                                                            £130    
Hall Carpet: Disclosured and non cleanable:                           £230
Window Blinds x 3 (Velux) Sadly expensive at £70 each.        £210
Broken Neighbours Window: Replacement glass.                   £200   (labour to come)
Broken DS                                                                            £95  
Wardrobe doors completely damaged.                                   £200
12 Sets of earphones                                                             £60
Bed                                                                                      £55                                      

I'm not sure I want to go on with this one.

Tally so far this year of just the big items.                               £1,180.00

I'll add more as I remember them and also add to it once a month.

Welcome to my new blog.

As a blogger already, I've decided that I really need somewhere to write more of the difficulties that exist in family life.

Welcome to "The Red Maze."

A bit about me.

I am in my forties, I have three adopted children and one of them suffers from foetal alcohol syndrome (FAS), two who struggle academically, and a mother who really needs to get a hobby.

I always seem to preface telling people what is wrong with my FAS child by saying:

"he's adopted,"

That seems to be a hang up that I have, and one that was as a result of the dirty looks and wobbly conversations that ensued after mentioning the diagnosis to people who thought I must be some kind of reformed alcoholic lush.

Living with the devastation of alcohol, it does give me the right to tell anyone who is pregnant that if they are drinking alcohol, that they're idiots of the highest order.  Don't anyone tell me that a few glasses are ok.  I'm never going to tell you that I approve of that, so don't bother trying.  And don't bother calling me all sorts of high and mighty for being so down on mothers who drink any alcohol at all.

I don't have any problem with women who've had a binge while they didn't know they were pregnant, or who were of the generation whose GPs told them that drinking the odd glass or two throughout pregnancy wasn't likely to do much damage.

I do have a problem with the women who are drinking alcohol now, when they know they are pregnant.  If they can't do without alcohol for a few months, they should really be thinking of going to visit Alcoholics Anonymous.

With that as my intro, I don't promise to be politically or socially correct, but I will share my ideas of how I see life with difficult people in the house.