Behaviour responsibility

As a parent of a child with learning difficulties and autism I am very aware of being out in social situations, both familiar and new to J.
Aware that his behaviours could either cause offence by -

• hand down the trousers/pants


• picking nose and putting fingers in mouth


• burping without trying to stiffle it


• walking/standing too close to someone


• suddenly yelling out random phrases or noises ( a favourite phrase that he yells out is "brush your teeth")

I am always trying to contain him and minimise the shock value for strangers.

Although having a child yell "brush your teeth" in your vacinity is more than a little embarrassing for all concerned, apart from the instigator!

Now, one issue I am always keeping an eye on is him becoming physical. Perhaps with him waving his arms around without care, or perhaps being pushy.
I am lucky that so far he has not exhibited these behaviours in public very much, but that does not mean I am being complacent as I know it can start without warning.

But how do you deal with another child, who also has learning difficulties, who is being quite physical towards you or your child?
For the most, the other parent/carer is on the ball and is quick to remove said child from the situation, offer an apology, and the situation is dealt and over with.
For the child who has a parent offering apologies you can offer sympathy and a knowing nod, not a tut and complaint as some people who are not converse with special needs will do.

But, what to do when a child with learning difficulties is overly aggressive and bordering on violent, but the parent/carer is non-plussed and not prepared to either stop the child or offer any kind of apology.
Instead the parent observes their child hit or kick your child, but just chooses to ignore it, your child and yourself.
This indeed happened to myself and all three of my children.
We were at an activity designed for children with learning difficulties and it was just us and this other child and her mother.
The child was around 6 years old and I could see her level of impairment was on a par with J's.
Firstly O my 4 year old was walloped on his arm by her and had a door slammed in his face. He was upset and hurt (with a red mark on his arm).
The mother just chose to look the other way.
Ten minutes later, her daughter approached the pram, with 6 month old W asleep in it, and lying down facing me, and kicked the back of the pram forcing W to fly forward, wake up and cry. Again the other mother looked at what had occured, but chose to not bother to say anything to either me or her daughter.
Finally, the girl attacked J. She kicked him hard in his shin and pushed him into a wall. An assistant in the activity had to intervene and remove the girl by the arm and take her to the mother, who was observing the event.
Both I and the assistant were silently shocked that yet again no offer of apology or taking charge of her daughter was received.

I do not think it is acceptable that any child should be allowed to be violent and aggresive. A parent / carer has the responsibilty to ensure safety for others. We all know that incidents can occur, but ignoring it and allowing it to continue without apology is something I cannot agree with.

I try to teach my children about respect and responsibility, and even J is expected, by me, to behave with no malice or hurt towards anyone else.
Yes, he has no understanding or compassion for any human being, but that does not give him the licence to go around being abusive. That is down to me to ensure he complies with due respect.

It was a very upsetting experience that was made so by a parent who had no care that my children were being hurt by her child. It appeared to me she almost had a smirk on her face. She was not embarrassed or nervous which might explain her inability to speak up. She just sat there, smirk on face, and let her daughter run amok and cause distress.

How much?!

Okay, so the big boffins have come up with a monetary figure that they say is a relative amount of cash we will spend on our children until they reach 18. That amount is £200,000 according to the Guardian newspaper.
£200,000 maybe on the average child. But how much more on the special needs child?
And I am not talking just about specialist equipment (which I am always being told is available via the Occupational Therapist, but as we are still on the waiting list to actually have a first meeting with one it is easier, but not cheaper, to buy the stuff yourself), rather I am talking about the replacement items of everyday household use, the re-decorating, the food (such as the very expensive Gluten Free items - cost twice as much, why?!)the accidents that need cleaning etcetera.

I have had to replace lamps, rugs, carpets, bath towels, windows, doors, televisions (he smashed the flatscreen with his fist and it split and went green), oven doors and washing machine doors (he stood on both to reach a higher level in the kitchen and they snapped off and needed replacing), repaint over ink drawings, repaint a whole room and on and on.

Once, we had just repainted the lounge in a boring but easy cream colour. To our stupidity we did not take the paint pots to the shed and lock them away, we put them in a cupboard. J found the paint pots one very early morning and proceeded to repaint our extension/brick built conservatory. The colour obviously did not appeal to him in there and so he opened the tin of Dulux, poured it onto the hardwood floor, and stepped into the cold and gloopy mixture.
He then made footprints all over the downstairs floor. He spread the paint over to the cupboards and created a marbling type effect, he then thought that the patio double glazed double doors needed to stop letting light in and so painted them to cover up the whole panes of glass.
This was all done 2 days before we were due to have a house warming party (well 9 months late!), and I was 12 weeks pregnant with W.

We spent the whole day with turps and wipes, bin bags and fumes.
We had to remove the cupboard doors and repaint them.
We turped and scraped the windows.
I was not allowed near the turps as I was pregnant, and so when I say 'we' I actually mean 'he', the hubby. He spent ages and ages trying to make it look half decent again. With my verbal direction (sarcasm intended) he did a good job.

J can easily waste a whole loo roll in one go - by tearing it up and chewing bits and putting the rest in the bath, sink or toilet.
He rips and tears photographs.
He breaks photo frames and ornaments.
He chews towels and makes them threadbare.
He has urinated on carpets that then needed to be deepcleaned.
He has over flowed water and caused ceilings to drip and bulge.

I could go on and on (and on).

I know there will be some do-gooders out there who will suggest that we could have done X or Y. That we should have made sure he did'nt have access to X or Y.
But really, take a minute. If you have children yourself, are you telling me that every minute of every day you are watching your child? And by child I mean over 5 years of age, not a baby or toddler.
When J is on a mission he is on a mission.
He clocks where things have been put but makes no clue to this.

It is fact. Children that have learning difficulties cost more. Financially, emotionally, socially, spiritually, morally and physically.
But boy they do make great stories to tell!

The beauty of autism

Have a look at a child or adult with autism. Do you see bitterness? Do you see regret? Do you see jealousy, hate, greed, spite, or egotism?

No.

The face that looks back is one of innocence. One untouched by the world and its cynicism.
A portrait of pureness which cries out to be protected and loved.

When you hold a sleeping baby in your arms and you gaze at their little rosebud mouth, delicate eyelashes brushing over their smooth skin, the fine downy hair and the smell of newness which emanates from their every breath, you wish that they never lose their beauty to the knowledge of life.

I know anyone can experience pain and upset, but this does not turn into a bitterness and hate.
Higher functioning autists may be aware of their disability and find it frustrating and isolating but the fact remains that they retain a quality, an almost essence of starlight that gazes from their eyes.

When I watch J sitting, looking into space, no hand flapping, no twitching, no manic laughing, I see his perfect features and beauty and feel blessed to have him educating me and the world that life is not just about the latest celebrity spotting in Heat magazine or the must have gadget of the month, it is about being human and discovering ourselves and what life is really all about.

More than ASD

It seems that as we have a diagnosis of autism we should now slink away, happy we have labelled our child, and not search out anything further that he may have.
I am aware that even getting a diagnosis of autism is a step more than a lot of parents out there get, who are left waiting around, being held up by red tape, all the while their child struggles at the main stream school with little or no extra support from a LSA and no help and guidance from any figure of support and guidance.

I have wondered for a while as to whether J has ADHD.
Could he just have an over active autism trait that makes him scream and scream, run around like he has taken some magic yellow hyper pills, then laugh maniacally and then repeat several times an hour?

I have learnt that a lot of auty children have poor sleep patterns and disturbed nights, but every night? Sleep finally around 11pm and then awake at 1pm, restless, back to sleep until around 4am and then up for the day. Does he keep quiet and play in his room at this hour of the night/morning? Heck no!
He runs back and forth along the landing, open his bedroom door, slam said door, run along (or rather thump along as he is very heavy footed) go into family bathroom, slam that door, run taps, fill up the sink/ any recepticle that can retain liquid, smash and bash objects into the filled up sink, laugh out loud, squeal, make "ooga ooga" noises, open bathroom door, thud along landing, open bedroom door, slam bedroom door, bounce on bed, scream, laugh, yell out various phrases from the Fimbles or Bear, laugh some more and then repeat all of the above for the next 3 hours, waking everybody up.

But does he have sleep issues? Not according to the paediatrician.

When I went to see my GP I mentioned I'd like to have an appointment with the local paediatician to discuss the possibility of ADHD. I was told that there is nothing more that can be done, J has his ASD diagnosis and that is all that is needed.

So I continue to wonder and self diagnose and cope with the behaviours.
Is'nt that what all us mums of special needs children do?

Then I wonder if getting someone to agree with me and confirm their opinion he does also have ADHD will be of any benefit. It won't change anything. It won't suddenly mean we move up waiting lists for appointments with clinics and specialists, it just means he has another label.

Creativity

J is very creative.
He can make a picture from a variety of substances, some made for drawing, some not.
Apart from the usual pen and pencil drawings on paper (and painted walls) he is almost, to the point, fanatical about his magnetic drawer. In total we have three of these drawers in the house, and I replace them every year, as they become quite worn on their main face and can also become lumpy underneath where the eraser bar has to move.
Even though these drawers are the same make and colour, he knows which one is his favourite. He will seek it out if I dare to swap them round, and will ask "drawone drawone" until he either finds it or I produce it (please don't think I hide it for fun, it is usually when I am cleaning his room that it goes into a tidy area)

Liquids such as shampoo and shower gel also get the J artist treatment. He will finger swirl them around on the television screen, mirrors, walls, and against shiny surfaces such as the oven heat protector door.
He will take his cup of milk to the garden, proceed to throw it onto the patio the milk not the cup) and then walk through it making dragging patterns and foot prints.

One day I would love to take him to an artist studio where he can have access to a large floor piece of canvas and a mix of paints and art textures. I am sure he would be in his element with the mixing, wiping, spreading, pouring and splattering of the paints against the fabric.

He was even creative with his own body fluids - blood. When he was going through his worst phase of head banging so far, he made his forehead open into a wound, and when it had scabbed up overnight he would then bang his head against the wall until it opened up again, and then press his wound against the walls, making patterns.
I could talk about his other body productions and the uses he has found for them, but I think you get the gist and can draw your own imaginative conclusions from it.
Suffice to say, and to reassure, I never allow him to continue with these creative products, and everything is cleaned and sanitised.

J may not have the artistic skills of some reverred autistic people, who recreate intricate architect type drawings of buildings, but to see him absorbed and happy when he is at his art work, I think he has his own unique talent, and it is one I love to display (minus the blood and other ones).