An explanation. How it is to be parents of a Special Needs child.

I'm not writing this in anger or recrimination. It's not written for sympathy. It's just an explanation and a personal view which may, or may not,  be shared by thousands of parents of children with problems.
My 8 year old son has difficulties. He was born with Sensory Intergration Disorders which we have known and had to deal with all his young life. He also has ADHD. Not the Daily Mail readers "AD what? Well he's just a little bugger who needs a firm hand! Never had any of this made up nonsense when I was a child. There were naughty children and good children..and he's obviously a wrong 'un!" type of ADHD. But a real, awful, tiring, confusing, hurtful little shit of a 90th percentile life destroying ADHD. He doesn't have green hair or 3 arms. He looks like a normal boy. On a good day you would think he's a perfect little boy. Even on a bad day, catch him at the right minute, and you would call him an angel. He's also big and strong. So when the clouds start to come over it makes the darkness  a sometimes scary place. It's like falling into a dark pit of anger and madness. It's where normal rules do not apply, and when he drags you in there with him, a place where, as much as you try, you can't look up and see any light shining in from the top.

But here is the thing. And to some of you it may come as a shock. He doesn't want to be in there either. He doesn't want to live his life in a rage or sadness. He doesn't want to destroy. He has a soul as good as anyone I know. He has a softness around babies and animals which comes from a loving heart. He knows they won't be judging him, his crippling anxiety goes, and my son emerges beaming from behind the stormclouds.. He wants to be 'normal'. He wants to play with his friends, ride his bike, watch movies and play computer games. He wants to be liked.

Sometimes he is little pain in the backside. I mean a typical stroppy 8 year old pain. We do not have rose tinted spectacles on. We do not excuse naughty behaviour or blame all of his antics on his conditions. My son can be a lary, challenging, infuriating little boy...just as all 8 year olds should be. We want our kids to have personalities. We are not raising automatons.
But, and here we are at revelation number 2, a lot of the time he cannot help his behaviour. He cannot snap out of it. He cannot suddenly change the chemical composition of his body. he cannot realign himself instantly. Sometimes he just goes and he is lost to us and, crucially, himself. He does not want this to happen and neither do we.

And so as parents what do we do? Well I will tell you. We love him and we try to help him. We get professionals to help him. We attend  never ending meetings and forums. We spend endless hours reading. We try various 'strategies' . We learn things. We buy things that might help. Take him to places that might calm him. We cuddle him when he's distraught and discipline him when he is bad. We make mistakes. Constantly. We sweep up the things that get broken and mend the ones we thing can be saved. We hide the physical scars. We take the blame for him hardly ever being invited anywhere. We make more mistakes. We feel the weight of the guilt that he has been shouted into bed instead of us stroking his hair while he drops off. We scream at him. We can't cope but find a way to cope. We hide the mental scars beneath smiles. And we carry on, because there is nothing else to do. In short, we try. As hard as we can.

And when we are out with him we watch. We don't have the luxury of not watching. At the park, in the street, at various clubs, discos,parties, we very rarely drop him off and leave. Even if we do the time is never spent relaxing. It's a constant battle to stop the brainworm of worry burying into your thoughts. We don't use the time to do a bit of shopping or go to the pub or just go home and sit down. We stay, and we may have a chat with other parents and a bit of a laugh. But we mostly watch.
It's interesting what you see when you really watch. Maybe another child slyly kick your son under a table. Or children moving their chairs away so they don't have to sit next to him. Or maybe making faces at him. My boy rarely goes into any situation except school without wearing a peaked hat or hood. The fact he is wearing it makes him feel safer. A bit more secure. It is a coping mechanism. a way of dealing with the world. If his disabilities were physical instead of mental you would call it a crutch. Other children take his hat off. Constantly. They steal it and hide it. Imagine someone with walking difficulties constantly having their crutch stolen. How anxious and insecure would that person feel? My son gets jumped on , kids hang off his neck, they bump him. Remember he is twice the size of most of them. He does things too. He's annoying believe me. But we are watching. So when we see our son getting over excited and we try to intervene. Not too much. He has to learn to cope with the situations. But we still have to sit there and watch. All the stuff that goes on. We watch as he gets more confused because he is being pulled up for things other kids are getting away with. We watch as he tries desperately to fit in. We watch as we see the disappointment in his face when he is excluded from a game he wants to play with his friends And we suck it all up with breaking hearts, because we don't blame the other kids, they are just being kids. They are doing the same little slightly naughty things that a million other kids are doing all day long. And I don't blame the parents. They have raised good kids and If I were able to not watch, I most certainly wouldn't.
But the trouble is children learn a lot of social interaction from other kids. They absorb things from their friends and then reflect that behaviour back to them. The sad thing is with my son is that he doesn't just learn and absorb behaviour. In an effort to fit in he sometimes amplifies it. So if he sees a kid wiggling their bottom for a joke he will copy that and do it to everybody. If a child hits him he will hit someone else, but harder. If a child swears at him he will shout that swearword at someone else. So what do we do? Do we not put him in any situation at all? Do we turn him into a pariah? A social leper? How is he ever going to learn if we do that? What problems will arise if we only let him out into the world at 16 totally unable to cope with any social situation?

So we sit and we watch. And occasionally accidents happen. Usually not through nastiness or anger, but from being over boisturess. Usually from a desperate desire to do what other children are doing. We know because we are there watching. And if need be we will take the occasional anger from other parents. We will take the looks and not listen to the whispers.We are genuinely apologetic for things that happen. We will suck up all the bullets aimed at the boy. We have no choice.

All we ask is that people just take a minute to try and understand. Take a minute to think. And maybe just occaisionally really watch. Maybe things might not always seem so cut and dried. .....or maybe you will be watching on one of the times when my son is being a little git and is totally to blame, which would be about par for the course. In either case, thank you for trying.

I am running a half marathon on 2nd march for Brainwave who are a magnificient charity who help kids like my son. Any money I raise will be used to help other children on their program as Dan has finished his course for the moment. If you can help please donate here


 https://www.justgiving.com/Simon-Geen

Insects and other Family members. Simons Blog

Here are some interesting insect facts!

Houseflies find sugar with their feet, which are 10 million times more sensitive than human tongues.
Ants can lift and carry more than 50 times there own weight.
Insects have been present for 350 million years, and humans for only 130,000 years.
Beetles account for one quarter of all known species of plants and animals. There are more kinds of beetles than all plants.
Termites eat through wood 2 times faster when listening to rock music.
There are nearly as many species of ants (8,800) as there are species of birds (9,000) in the world

In short insects are the most successful and adaptable animals on earth. They are amazing. Life on earth would cease if they were to disappear. It has come to my attention recently though that my family have an entirely new use for insects. It seems we use them to make a point. ....
Example 1) A few years ago my eldest boy refused to let me remove a dead fly from a shelf in the dining room. I came down the next morning to find he had put half a grape next to the little body, in case it got hungry.Point?" I WANT A PET! GET ME A PET! I CAN LOOK AFTER IT! GET ME A LION OR A HORSE OR AN ABALONE OR SOMETHING! BUT GET IT NOW!!!!!"

Example 2) My youngest getting out of bed and running downstairs saying "I can hear a wasp! I can hear it coming to get me. It's gonna sting me MUMMMEEEEEEEEEEE!!! Point? "You shouldn't have put me to bed you bloody idiots. I should be allowed to sit downstairs until the early hours farting and eating my own body weight in chocolate".

Example 3) My wife found a dead fly on the bathroom floor. She stepped over it. It was there for 3 weeks. Point? "Why should I pick up the dead fly? There are three males in this bloody house. Lets just see if my bloody useless husband notices and  can actually be arsed to deal with it!"

Example 4) I found a dead fly on the bathroom floor. I stepped over it. It was there for three weeks. Point? "There's a dead fly there. I KNOW my wife will have seen it. She's conducting an experiment to see if I will pick it up. I'm gonna leave it there to see just how fucking annoyed she's gonna get before actually EXPLODING! This is gonna be fun!!!!"

Insects. Useful.

Excuse me sir! You seem to be driving whilst philosophising.

So you're driving down the motorway and listening to your kids have an 'upper register' discussion about wether a 'look' constitutes actual physical assault ( my 3 year old near hysterical screams seem to indicate it is up there with being stabbed, whereas my 8 year contends that ' it's just a loooook,' with added head roll). Then you pass a sign that says 'This sign is not in use' ......
So... It isn't  in use....but you have just read it...so it is. So the sign is lying... But it's not.... Because it is... Or not? So if it is and it isn't does that mean it exists in 2 different states? So does that mean it's there at all? Do I exist in 2 different states? Is there another me that is not permanently beset by school sent colds, crushing tiredness and permanent skintness? Am  I really a bronzed god driving a Ferrari to my private jet for a trip to my own island? Do I have no kids in the back really?

At this point I am caught behind the left earlobe by the chewed off leg of  the Yellow Power Ranger  followed swiftly by the request that if I don't stop the car immediately someone is gonna poo theirselves as 'it's coming out!!!!!!!!'
So this is it then.......Schroedinger......stick your cat up your arse...

Help me! Simons blog

It is with regret that I have to inform you all that I have agreed to row early on Sunday morning. I know this is not actually noteworthy, but the thing is I have not set foot in a gig, whaler, or seine boat for nearly 14 months and may be too unfit to even lift an oar. I anticipate that that after about 20 minutes I will start bleeding from the eyeballs and soon after my internal organs may show their disapproval by spontaneously erupting. To complicate the matter it seems that there is going to be the start of an extremely bad storm which is likely to capsize the boat and send my now deformed body to the deep.
I am telling you this because when my crab nibbled remains eventually wash up on a south Devon beach I anticipate you being able to read about my discovery being covered in a variety of newspapers under the following headings..
The Sun - "Hideous Prehistoric Carcass Washed Up on Devon Beach. Scientist say this is proof of Nessies existence!!"
Socialist Worker - "Bloated Capitalist Dies After Eating Own Yacht!"
The Telegraph - " HS2 Link Hits Further Snag"
The Star - "Deadly Poisonous False Widow Spider Causes Man To Turn Himself Inside Out! Minister says ' One of these bit my wife in the boob. The swelled up to 44DD! Where's the problem?'"
The Daily Mail - "Roma  Launch 'Torpedo' Immigrant Attack! Insider says specially trained gypninjas are being fired through the english channel in order to explode next to Brtitish children. This could destroy the very fabric of our society........if only Diana were still here......"

Simon's blog; Bored of charades?

Although the children have just gone back to school and it's still warm enough to flash the milkman..............ahem..........anyone who has visited a supermarket recently will leave having no doubts that christmas is here NOW!
Yes that's right, even though it may seem as though we have months until the coke trucks arrive, aisles full of mince pies with a november sell by date prove beyond doubt that we have to start planning for the big day.
I know that after dinner entertainment on christmas day tends to be a straight choice between watching a sacked actor make his spectacular soap exit, or watching Grandad do a slightly disturbing mime of 'Whatever Happened to Baby Jane' in charades. But now, thanks to my wonderful children, I have invented a quite spiffing parlour game for all ages! I think our victorian ancestors, gathered around a hearty fire and cracking their filberts, would have been absolutely beside themselves to have a game of what I have called
"What the f....?"
It is a hugely entertaining amalgam of charades, kerplunk, 20 questions, and the once popular online site 'rate my poo.'
Ok. Ready? This is how you play.
1) Simply let your 7 year old visit the toilet for a apparently much needed number 2 accompanied by a favourite small toy.
2) Wait for slightly anguished cry followed by the word daddy. For full effect the word daddy must be said in a rising, followed by a falling, manner. i.e. "daddEEE!  DADDEeee!" This is the signal for a game to start.
3) Enter the toilet to find your son, wearing a confused look, holding a HALF USED piece of toilet paper, and complaining loudly that his toy car had somehow fallen from his hand and landed in the recently soiled bowl.
4) Now the fun begins. All you have to do is try to retrieve the car with a hastily found implement that you will NEVER USE AGAIN!!!!!!! In this instance......a pair of chopsticks (don't ask..)
5) Whilst doing this task there are certain other rules which must be obeyed. You must not gag. You must try to ask half of 20 questions (I don't mean 10 questions, I mean half of 20 questions. e.g " What the fu.......? How the bloo.......? If you were SITTING DOWN what the..........? Why...........?) These questions must be asked in an increasingly high voice until the last one is only audible by dogs. You must also try to interpret the answers from the , frankly, nonsense mimes that your son is doing in response to the questions.
6) The winner is determined by being the person who is NOT on their hands and knees staring into the abyss in the vain hope the thing they are stirring round is in fact a miniature beige vauxhall astra......i.e it's never gonna be daddy....

I really feel that with enough support we could get the game into the shops by the end of november and record xmas sales are sure to follow......

The Course. Adoption Diary

As time goes on in your assessment you almost begin to relax. The natural rhythm of weekly visits moves you closer to the ultimate goal of approval and eventual adoption, but somehow for us the reality of the total change in our life still seemed distant.
Then we went on......the course.
There is a scene in the brilliant film 'Airplane' where an hysterical woman gets slapped round the face in an attempt to calm her down. Then someone else has a go...and then the camera pans back to see a queue of people holding baseball bats, tennis racquets, bottles etc, all lining up to take their turn.
There would come a time on the course where we felt like that woman after the queue had all had a pop.

It's a 3 day course, and it gives you a chance to meet and talk to everyone. Others who are going through the assessment process, social workers, child experts, those who have adopted, and those who have been adopted. Your precious little preconceived ideas become cracked, broken and soon swept away by a tidal wave of cold hard realism.
The first thing we did was meet the others on the course. These were the people who, like us, where working there way through assessment. I was struck by the variety of their stories. A few were the same as us. Couples who could not have a family naturally and had immediately chosen adoption as the best option. There were others who had already had kids and were looking to adopt purely because they felt compelled to give a child a home. And there were some who had tried every single avenue to have their own children. Every treatment had been tried. Every hope had been extinguished. To them adoption was the very last chance they would have of having their own family. I must admit I found these guys the most difficult to converse with. There was a desperation in them. A tension in how they looked and spoke which hinted heavily at the pressure they felt. It wasn't that I didn't like or get on with them. But I felt uncomfortable when my slightly laid back, jokey manner, was contrasted against their heavily focused, deadly seriousness.

The rest of the day was spent in talks with a number of of experts. And it was a complete eye opener. My belief that adopting a baby would be the easy option was soon smashed. It was made clear that there are no undamaged children in the care system...and that includes babies. (I have since learned from experience that this is more than true...believe me!) The seriousness of the damage may vary. The time of when problems occur may vary. The symptoms may vary. But the perfect, trouble free adopted child just does not exist.
Although I felt slightly deflated after the first day I was soon to learn it was a walk in the park compared to day 2.

Day 2 ripped my heart out. When you watch the news or read the paper about the abuse of a child it is heart wrenching, but you can get up and make a cuppa. You can close the paper and go for a walk. You can escape. When there are people sat 6 feet away from you talking about their experiences there is no hiding place. We had stories from social workers, from child psychologists, from adopters/foster carers, and from brave brave people who had been abused as children and now wanted to help by sharing what they had been through. Of all the horrible stories the one that sticks in my mind is from an adopter. She had adopted a young girl who had been taken into care to protect her from her birth father. Social services knew the father was violent towards her but thought that was as far as it went. After many months in her adopted home the girl calmly walked in, sat down at the kitchen table, and started to talk to her adopted mother about the sexual abuse she had been subjected to by her birth father. The adopted mother had to carry on washing up, stay calm so as not to scare her daughter or give her the impression that she was doing anything wrong, and just listen while this small girl unburdened herself of secrets no child should feel they have to keep.

I went into day 3 with a heavy heart. But what an incredible day. Day 2 nearly broke us. I think that was the point. Our social worker told us that if people were going to drop out of the adoption process they usually did it after the course. The reality has to be confronted. The worst case scenarios have to be told honestly and brutally. Adopters may never have to be confronted by terrible issues, but there is a good chance they might. And you have to be able to deal with it. Because who else is there?
But after the depths came the heights. The speakers on day three were mostly adults who had been adopted.These were people who had been confronted by the many different issues adoption brings. They were incredible. The tales were not relentlessly happy, but they all ended on one note. How their lives had been made better by being adopted by good people. How proud they were of their adopted parents. How good people can make a difference to young lives.
People like us.
And we walked out of that gruelling 3 day course thinking that it had been worth it. And that whatever happens in the future has got to be worth it. Hard as it might be.
The fear didn't leave us, but maybe our confidence and resolve grew just a bit.
And so onward to the panel and, hopefully, approval.





























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Product review JUVELA Gluten Free products

|There are certain things which usually manage to give me a feeling of approaching irritation.
TV experts, website popups, sporks (don't ask)..........and gluten free food.
My 3 year old son is a lively, healthy little boy who unfortunately has severe allergic reactions to many differing foods. He has a pretty varied diet and loves fruit & veg, but sometimes you can see he wants food he knows will make him poorly. Bread, pasta, biscuits, cakes etc. We have tried many gluten free products but the major feeling I get when he tries a GF product I have given him is embarrassment. There I am, the man he loves and trusts, trying to pass off heavy, stodgy, taste free food as special 'treats'. Too many times have his little eyes turned up to look deep into mine with the unsaid assertion that if I ever try to mix cardboard into his diet again he will put my Ipad down the toilet......
So all I can say is thank you to the good people of Juvela and their range of gluten free products. The first one we tried was their cereal flakes. Despite my sons deep scepticism of another one of daddy's "try it, it's yum!" moments, he gave it a go.....and loved them. He liked the flakes plain and crunchy. No milk. I, despite not actually NEEDING to eat them, couldn't help but eat the odd big bowl with milk and a sprinkling of dried mixed fruit. (purely for research purposes of course). Light, crunchy, tasty. Could the range actually restore my sons faith in me?
Emboldened by this sudden turn of events we moved on to the Juvela pastas. Fibre Penne first. Then Fusilli. Both were enthusiastically devoured by my son. And it actually didn't matter what was served with it. Tomato sauces with chicken. Cheese sauces with broccoli. The pasta was light and had none of the slight graininess which other GF pastas can have. Judging by the boys face it looked like he had actually put his head in the bowl and ate his way out.
By now, with my food hero status seemingly assured we moved on to the biggy. Flour. Or as Juvela calls it, Harvest White Mix. Both the bread and the cupcakes that were made seemed to go down well. Again there was a lightness which is rarely found in GF products. My son seemed to enjoy the almost unique experience of the whole family wanting to eat 'his' food for once. Thanks to Juvela it won't be a one off.
For more info on Juvela products go to www.juvela.co.uk