Change the outlook, change the attitude, change the future

Over the last few decades society has been forced to look at and accept that people with mental disabilities do exist.
These people can either have their disability from birth (whether it was noted at birth or later on in childhood when milestones were not being met) or acquire it through illness or accident.
What did our ancestors do with their offspring who presented with a learning difficulty? For some they had them put in a mental institution, perhaps from a very young age, and others kept them under house arrest, away from prying eyes and gossips.

These children, teenagers and adults were not integrated into society for fear of the response of others. A lack of understanding, embarrassment, and accusations of blame were more than likely levelled to these families, and so to keep their social standing, these children and adults were hidden away.

There are many reports that those mental institutions were harsh and unkind to their residents, with beatings, painful 'human guinea pig' tests, and uncaring staff making the lives of those people even more of a struggle.
Quite how we as human beings thought it just and right to be so cruel and hurtful to people with special needs is beyond me.
But then there is always the fear of the unknown, and fear breeds hostility and resentment, and human beings can turn on each other for the slightest thing.

Thankfully my generation is learning about it all, and that no matter what the disability, we are all human, we all breath the same air, we all have blood pumping through our veins, and we all deserve to live a life without prejudice, pain and contempt.
But, even though the majority is now aware of disabilities, it does not stop the stares and the judgement from a certain sector of people.

Steps still need to be implemented or improved upon in cracking down on those in society who thrive on bullying those more vulnerable. Police need to wake up and do the job they took the oath on, instead of side stepping their duties, as was seen in a recent case in the press. Judges and the CPS need to wake up to the realisation that harassment, bullying and intimidation upon those in society that need more protection can only be achieved by having a hard and strong line that prosecutes and punishes (not with a measly community service order) and shows others thinking of following in their peers footsteps, that it is not acceptable and it will not be tolerated.

If we don't continue to push forward, expose the reality, punish those who bully and intimidate, improve the services that provide care, respite and advice, and shout loudly and proudly that having a child with a disability is in no way a bad thing then we will not continue this journey out of the dark ages where we one day will see equality and social freedom ( from prejudice and hate) being the norm.

Avoid the avoidable

Throughout my journey into autism and the way it affects J, I have learnt many things which can trigger off melt downs, tempers, screaming (both the happy and upset screaming) and dangerous things such as ponds or main roads.
I find that certain quarters expect J and myself to go out of our way to accomodate them. As an adult with my own mind, common sense, and a tired brain having to deal and cope with the 24/7 ups and downs of J, I now no longer allow 'guilt trips' to be administered or double edged comments from those that should know better.

I understand J. He knows I understand him. He trusts that I will not put him into a situation where it would end with me continually saying " no J come back, no J stop doing that" et cetera.
Of course certain situations are unavoidable, such as the recent melt down at his brothers school. There was no way around this event as I have no family close by, and even if I did I have doubts the help would be proffered anyway (apart from my own mum, who by the way is a fantastic nanna to her grandsons and after 32 years has become my best friend).

I get quite angry now when hints are made that I should be taking J, and the other children also, to places out of my comfort zone. Places that have obvious dangers of water, are close to busy roads or are not really tailored for children, which would not just present a risk to J soley. Places where I would be left to care for all three children as I am the boring one who does not drink alcohol and so is deemed a party pooper (or holder of a clean liver which ever way you want to look at it!)
Holidays need to be planned for and I have to ensure they are suitable for children. I would'nt dream of taking them on holiday to a place where adults drank too much alcohol on a daily basis and became spiteful with it and it came down to me having to be the only responsible adult around - that is not a holiday for me!
Why would anyone want to be put through this? It would not be fun and no-one would enjoy themselves.
I have places that are tried and tested. An example is that I will not take the children to a playground in the middle of the day on a school holiday or weekend. I tried a trip out again today and it was awful and proved my point. J did'nt understand that you can not stand close to the swings and freak the mums out with your stares. He was trying to push his way onto equipment and I had to remove him for his own safety. Of course this then affected O as it was not fair for him to leave, but I turned the trip into a magical walk amongst the leaves and O had to count how many leaves there were on the ground - a never ending task!

It seems until others have experienced a melt down or hectic behaviour from J, when out in public, and have to deal with it alone, they have little compassion for me, and have even been known to be spiteful with words to others. J may not be aware of the bullies in this world (and they come in all shapes and sizes, short and tall, men and women, old and young) but I am, and I do not allow them to behave in this negative and hurtful manner - I will always speak my mind and not be told I am silly or stupid - especially in my own home (not that my hubby ever has spoken to me like that - he has respect).

Full moon

A few years ago I came across an interesting piece regarding the full moon and its effect on people.
Not everyone of course, but more significantly those with a learning difficulty.
At the time of the full moon this category of person can experience sleep problems and an increase in hyper activity.

When I read it I was sceptical. But, due to my OCD I had to track his ups and downs and chart it to the waxing and waning moon.
And low and behold there appeared a pattern.

His sleeping has always been sporadic at night, going from only having 3 hours to a full 8 hours but on every full moon he was restless in the day far more, and demanded more of the repetitive words be repeated back to him ('brush your teeth' being the favourite still now) and could not settle at night until around midnight, no matter how much exercise he has incurred during the day.
He would be up at the end of the first sleep cycle and pace around, making his noises and just not being able to sit still.

There are as many articles out there to contradict this finding though.

But, it fits the pattern.
And I now prepare for the full moon and J.

I have mentioned here and most probably before in previous posts that J has words or phrases he says over and over again, and he needs them to be repeated back to him, otherwise he becomes very agitated and will progressively get louder and louder and intersperse it with crying, self hitting, attention seeking behaviour such as knocking photo frames off of the mantle and screams.
All of the following have been said by him -
*Brush your teeth
*Orange
*M (a girls name from his school but I am keeping the privacy option here )
*Why seddy bear, yessy yessy

These are his top four and can be said daily by him.
All you have to do is to repeat the word or phrase back to him. Simple. He is placated and happy.
If only it was all that easy!

Oooh that was a melt down and then some

Okay, so today was anticipated. It was mentally planned for. I was expecting some kind of recourse for the events to take place. However, what did eventually occur this morning was no where near anything I could have forseen, and with only myself to guide I was stranded and lost in a world of my eight year olds melt down in the middle of my middle sons school.

Let me start at the begining.......


Today was an inset or teacher training day for J.
O still had school, even though it was 'wear something bright' day, so no uniform.
J was thrown off kilter first thing as he was dressed in his weekend clothes, and so presumed that it was a Saturday and therefore Mencap day.

As we are driving to O's school J is becoming agitated in the car, calling out "Jamies" which is his word for Mencap.
We pull up fairly close to the gates and all get out.
On our walk into school J is calling out "wipe, wipe wipe" which is his word he uses when he is getting upset.
I am using the calming words I say to him to try to alleviate the situation, but it is not having its desired effect.
As we approach O's classroom J takes his coat off and wants to play.
I make the attempts to get him to put it back on and leave but he throws himself to the floor.
He screams a scream like a banshee on sugar coated LSD.
I manage to get him off the floor (and I am carrying W as well).
He shrugs me off and tries to run into class again.
I pull him back and he throws himself on the floor.
I get him up and he screams.
We move along the corridor two paces and he screams and starts to hit himself.
Then he drops to the floor like a tonne of bricks.
I get him up again and we move three paces before he screams and whacks his arms together hitting them hard.
This up and down, scream and hitting continues all the way back to the car.
It takes us twenty minutes to reach the car in what would usually take only three.

I would point out now that each and every other parent stared. Stared and caught flies in their open mouths.
No one offered to help. No one bothered to offer a kind smile. I was looked upon as some freak show and they had gotten in for free to view.

Back at home I could see the effect this melt down had had on J.
The area under his eyes was and still is red.
It lookes like he has been punched.
But, it obviously occured from the high levels of stress hormone, cortisol, that was released and made the blood rush to his face where it has pooled and now looks like I beat him aswell as allow him to throw a strop.

So to summise, if there had not been another one of these days off for 'training' (which could be taken in the actual holiday the following week) we would not have had this happen and my hair would not have added another crop of grey to it.

Little things

Isn't it funny how I celebrate such small achievments (in other peoples eyes) that J demonstrates, but to me they are huge.
I suppose because I have become accustomed to the fact that he will not be a rocket scientist, drive a car, marry or have children, I appreciate all the minors because they are more like the majors to me.

He gets spellings home now as homework. I held each word up to him and he proceeded to point to each letter, name it correctly, and then look to me to help him pronounce the word it spelt. The only word he was able to say correctly without any guidance was 'mum'. Now I know he has learnt this from memory, by which if he says or someone else says " M. U .M" he remembers it as a rote saying, ie; ' M U M mum'. He won't just say 'mum' if he sees the word with no verbal direction.
But, the fact he was happy for me to hold the cards up, he did'nt try to escape off to another activity, and he seemed to enjoy the interaction we had, along with getting all the letters correct, made it a very special moment.

I also am amazed at his computer skills.
He is like a whizz kid maneuvering the arrow around, double clicking, entering into programmes such as paint, and wow I let him on YouTube and I typed in Fimbles, and he knew how to access the videos, to exit them, and to enlarge the screen.
He loves YouTube now as he can view all the programmes he loves but which are not aired on television anymore.

I also tried him on eBay as I thought an experiement was in order.
You see we never really know what to buy him for presents. Yes we know his latest fad or fixation but he cannot tell me exactly the things he'd like.
So I typed in Fimbles, and he was in and out of the adverts, enlarging the pictures to see them better, and I could see what he was loving. He bypassed certain adverts so I took that as a no!
My test worked and he'll now get presents he really wants!

I may be wrong here

The following is my opinion. I am basing my post on children like J - learning difficulties and autism.

I find it really sad when parents will not accept their child has special needs and stops them going to a special needs school.

I have seen on forum boards and in real life over the years many parents who send their child to mainstream, where they end up moaning about the way the teacher can not cope with their child, that their child is aggressive to other children, that their child is distressed et cetera.

Why oh why are they doing this to their child?

Denial?

Embarrassment?

Refusal to accept it?

I understand that some find it hard to get their child into a special school due to the local authority's lack of intervention, or the delay in Statementing.
But those that feel their own face should be saved by sending them to mainstream is so sad in my book.


I have seen first hand the amazing work special schools do.

The teachers, the LSAs, the receptionists, the dinner staff to name mostly are all geared for their job. They have a compassion and desire to make life fun, easier, interesting and safe for our special children. The classes are smaller, the ratio of teacher/LSA to child is greater (J is in a class of eight with one teacher and three LSAs) and the equipment is designed for special needs.



When we were at the start of the journey, when we knew he had autism but needed to be assessed for the year, the team we were under helped us to find the best school for him.
While we were waiting for the Statement of Special Needs to be completed he started as a 'nursery' pupil at his school, attending three days per week.
The part I had to complete for his Statement had me writing that at no point did I consider a mainstream school suitable and that if they tried to place him into one I would fight them through every tribunal available.
I was so anti-mainstream because it would have been J getting 'lost' amongst the noise, the crowds, the expectations of him socially.

Why would a parent prefer this for their child just so they can save face amongst family and friends?


I know I sound harsh but I thought every parent wanted the best for their child not their social standing.I only hope those in denial get a taste of reality, before their child becomes too traumatised by bullying, struggling socially, not learning (because the way education is taught between mainstream and special schools differs vastly) and emotional fall outs.

I love eBay!

Where else can you find a toy that went out of manufacture three years ago, that your autistic child so desperately wants?!
I must put my hand up and admit I was once a high volume seller on there and built a big online business purely from selling on the site. I still have the account, but sadly I have no time these days to spend listing, dealing with customers and their (sometimes odd, sometimes down right rude) messages, the Post Office queues (yes it was probably me who held you up in the queue one day, sending my 101 parcels I had sold over the weekend!), and the rip off (in my opinion) that is the seller listing fees,the seller selling fees, the PayPal fees and the expectation that I should gold leaf wrap each parcel and hand deliver to certain customers within the hour of them pressing 'Buy it Now'. Can you tell my few years of doing this that I got a little jaded by it?!

But I am digressing.

J develops passions for various characters from TV.
Most of these however are from a few years ago -

*Bear in the Big Blue House
*Fimbles
*Story Makers
*Higgledy House
*Balamory
*Teletubbies

Apart from Teletubbies and Fimbles, the others are not readily available to buy from the highstreet anymore. But why should I pay the vastly inflated highstreet prices for these goods when I can get them in near perfect condition, second hand and at a fraction of the price from eBay?
So I trawl through eBay for second (or third or fourth) hand items that are related to his passions.
DVDs, cuddly toys (preferably that make noises) and books (hardback to avoid him ripping the pages) are all gratefully bidded on.

His bedroom is awash with all things Fimbles at the moment.
He is just mad on it.
And because it is'nt actually costing me a fortune he has rather a lot of the stuff!
I just imagine in the future, when he is a grown man, that he will still have all these child orientated items and love them just as much as he does now. And why should'nt he? He is so happy when surrounded by them, I want him to be a happy adult too - even when he still has a Tinky Winky propped up on his pillow!

Wooden floors and kitchen rolls

Subject warning! Do not read when feeling ill or eating!





Well J has been up to his old trick of vomitting at will.
It could be from over eating or drinking, to coughing and coughing that he can do to induce the stomach to empty.
He quite enjoys it.
The only time he does'nt is when he is actually ill with a stomach virus as then his stomach is aching and contracting and the vomitting is not much fun.

I can always tell when he has a stomach virus rather than just his cough and sick game.

It may be a game to him, but my floors don't get off so lightly.
Thankfully I removed all but the stair and landing carpet in the house, so we have wooden floors every where else.
I came to the decision to remove the carpets through J and his sick.
When we moved to this new house the previous owner had had beautiful cream carpets down.
They stayed beautiful for all of 6 days after we moved in.
What with two labradors who think mud pools and ponds were made for their enjoyment and young children who prefer their crumbs to be ground down into the fibres, the carpets turned a rather sludgy colour and had a mixture of mud paw prints, spilled food and drink and splodges of vomit.

So, up came the carpet, and down went the flooring. Good hard wearing wooden flooring.

It makes for quick and easier cleaning of liquids. It does however show up the amount of fur my two dogs shed come summertime. I swear if I collected the fur up (that I was hoovering up twice a day during the height of the shedding) I could create a new fur coat for a modest sized doggy within a week.

I also spend a fortune on kitchen roll.

I do not like using mops and buckets to clean vomit as it tends to linger and give off that smell forever more. Plus hygenically speaking throw away cloths are better.

I can easily go through a roll a day on cleaning up spillages, food deposits and vomit.

J has some command that when going to vomit it is best (according to mummy telling him to) to go into the bathroom. As yet he has'nt worked out that when I tell him to do it in the toilet that I mean be sick and not sit down and try to wee.

So I spend ages cleaning up the sick from around the toilet bowl and floor.

I hope his new game lasts but a few more goes, if not at all. Wishfull thinking!

So 9 years ago

This day nine years ago I discovered I was pregnant with J.
It was my first ever pregnancy and my first ever positive test.
I can still remember where I was, what time and my reaction to seeing a blue cross appear instead of just a line (how Clearblue used to work back then!).
In the evening, after doing two more tests, I popped them into an envelope, which I then popped into an oven dish. The oven dish went into the (not turned on) oven.
When hubby came home I told him that I had been busy cooking and that he needed to see the bun in the oven I had made. He looked into the oven, quizzically looked at the envelope, looked a little perturbed at what this was all about, opened the envelope and a huge grin appeared on his face!
Such happy memories.
I was ecstatic.

Fast forward nine years and I have three children now.
Each and every child was planned for and wanted (including my beautiful Angel Baby - C).

If I had the opportunity to go back in time and change the dates of conception so that J would not be here, and thus autism would not be in our life, I would not.
J is and always has been meant for me and I for him.
He was chosen as my child so that I could learn about life other than through EastEnders or Coronation Street. He is a gift from God and one that even when times are hard and I am stressed, I never ever wish was not here.

I believe J was given to me as I am a very forthright person. I have learned to not be afraid to speak up and to educate those with little or no knowledge of autism and learning difficulties.
I can see the good in even the most bad of times and I can laugh when a lot of others would be crying. I can look at J and see a child who is locked inside his own head. It is my duty to help ease his traumas and to let him live a happy and safe life.
I can see positives in J and do not think he is an anchor pulling me down in a stormy sea of unknown.

I can spot a person with autism a mile away. They always bring such a huge smile to my face, and by that I mean in a positive way, not because I am laughing at them.
I just naturally gravitate towards them and them to me.
I can look back upon my childhood and teenage years and can remember a few occasions meeting high functioning and low functioning autists, even though back then I did not know that was what they had.
I found myself befriending them and treating them as a person and not an affliction.

In my future I will be trying my hardest to still fight for every autist and their rights and make sure my son has an amazing life.
So I believe God looked down and saw me at ease and total normality around autism and chose me to have my very own autist. J is very lucky to have me (!) and I him.

Special mothers

This is a piece I came across thanks to a friend on Facebook who posted a link.....

Some Mothers Chosen By God

Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit.

This year, nearly 100,000 women will become mothers of handicapped children.

Did you ever wonder how mothers of handicapped children are chosen?

Somehow, I visualize God hovering over earth selecting His instruments for propagation with great care and deliberation.

As He observes, He instructs His angels to make notes in a giant ledger.

"Armstrong, Beth, son. Patron saint, Matthew.

"Forrest, Marjorie, daughter. Patron saint, Cecelia.

"Rudledge, Carrie, twins. Patron saint… give her Gerard, He's used to profanity."

Finally, He passes a name to an angel and smiles, "Give her a handicapped child."

The angel is curious. "Why this one, God? She's so happy."

"Exactly," smiles God. "Could I give a handicapped child a mother who does not know laughter? That would be cruel."

"But has she patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it."

"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has his own world and that's not going to be easy."

"But Lord, I don't think she even believes in you."

God smiles. "No matter. I can fix that. This one is perfect. She has just enough selfishness."

The angel gasps, "Selfishness? Is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child who is less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word.' She will never consider a 'step' ordinary."

"When her child says 'Momma' for the first time, she will be present at a miracle and know it! When she describes a tree or sunset to her blind child, she will see it as few people ever see my creations."

"I will permit her to see clearly the things I see… ignorance, cruelty, prejudice… and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side."

"And what about her patron saint" asks the angel, his pen poised in mid-air.

God smiles. "A mirror will suffice."

Written by Erma Bombeck