Friday, 31 August 2012

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.

Thursday, 30 August 2012

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.

Wednesday, 29 August 2012

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.