Some Mothers Do Ave Em

Frank Spencer, the main character in this 1970's sitcom was the daft, hazadous man who traipsed through life causing mayhem and chaos wherever he went.

I used to love this show when I was a child.

I have been watching the endless repeats on G.O.L.D on Sky and it has occured to me that he has autism.

I know back then autism was rarely heard of and those children and adults with it were either hidden away in the family home, locked up in mental institutions, or were referred to by locals as the 'eccentric or weird' one.

Michael Crawford who played the role of Frank must have been inspired by person or persons he had met. The same as the writer and creator of the show, Raymond Allen who created Frank and the situations he encountered.

An examples of what has made me think there is an autism link is that
Frank approaches a man in a car and the man remarks sarcastically that it is raining cats and dogs (or similar) and Frank looks bemused and gazes up at the sky almost expecting cats and dogs to be falling. We know that with autists they can take these phrases as literal and find it hard to understand why we would say that.

Frank seems almost oblivious to his behaviours and the causes and effect he has when he attempts to 'help' people. Exploding gas ovens, cars rolling off a hill, 'fixing' furniture (that then breaks).
In later epsiodes we see him try to understand why everyone dislikes him. He visits a physchiatrist and proceeds to tell him he is a failure. By the end of the episode the physchiatrist agrees with him.

We see him struggle to comprehend and makes such noises as "oooooo" when he is trying to work out what has just happened or what someone has just said.
His gait is also very fragile and faltering as if he lacks the ability to be strong and forthright.

The way the character was written and acted made him likeable and we were drawn to rooting for him and feeling sorry for him.
There is no malice intended, but fun is poked at him to create laughs.

I may have looked too deeply into this sitcom, but writers do draw on personal experiences and real life family and friends. The character of Del Boy in Only Fools is based on a man the writer, John Sullivan, knew of, and many of the episodes and incidents were genuine occurances that he saw or was told of. So it can seem logical that Frank Spencer is based on a real life autist.

Is this a car con?

Now I am not sure if this next blog entry is accurate and I am going on the knowledge I am aware of, so if I am incorrect please do feel free to comment.

We have a Motability car. This is the second car under the scheme. We had the first car for three years and the present car for just over a year.
With the first car, the scheme ensured the car was taken in for a service yearly, and all faults, no matter how small, where fixed at that time.
If the car developed a fault at any other time it was simple to telephone up the helpline and arrange for the car to be taken in for fixing, with a courtesy car arranged at the same time.
With the first car I did have to have it taken in for fixing as the manufacturer had made a recall of all cars of that style.
I had a little bit of hassle trying to get the mechanics to provide a courtesy car, and when they did, I was given a tiny (and I mean tiny) three door car, that had the same amount of power as an electric bike that needed to be recharged.

This time around, with the second car on the scheme, certain rules have changed.
The main one so far, which I was surprised to find out, is that the car is now not taken in for a service after its first year of use. It has been changed to only having it checked over once, in the second year.
This information was provided to me via the car dealer I obtained the vehicle through, as I had not received any notification of a scheduled service date, so had to chase it up, and was informed of the new rule.

This car dealership, a major retail brand, then proceeded to write to me, informing me of the dangers of not servicing my car, and that if I suspect a fault I should bring the car into them so they can check it over and fix it. But this is for a fee. They stated a one off fee for the service, and then the small print went on to explain the parts would be extra.

The Motability scheme is one that provides insurance, road side assistance, and all parts of the car being covered and fixed, with no cost to the car owner.
If my car were to develop a fault I would call the helpline and book it in for repair, and I would not be charged for it.

So why is this car dealership suggesting I should fork out for them to service my car and repair it? The intimation was also that if I ignored any fault the cost of repair would be far higher for me.
The letter made knowledge that I was on the Motability scheme, and so a simple error of sending me out a standard letter can be ruled out.

It appeared to me to be a company playing on the fact that these customers were at a disadvantage of requiring a Motability car in the first place, and therefore scare tactics and almost a brand of sly conning were being used to try to drum up business and profit.

I won't be naming and shaming the company on here, but anyone who knows me can see the car I drive and figure it out!

Phrases

"Why Lunar, fworgo, siggy by song".

Dose'nt make much sense?

Well it is one of J's mysterious phrases that I just could'nt work out until this morning.
What he means is "Why Lunar, before you go, let us sing the goodbye song".

You'd think with the amount of time we have Bear in the Big Blue House on that it would have twigged with me, but alas the way he said it, and the speed , it kind of blended into all his other noises and sounds.

He has a favourite sound that is very close to the way Michael Jackson would belt out "ahee hee" during his singing. He could pass for a sound-a-like that's for sure.

Now I just need to try to understand what "aah daa daa daa daaa daaa, weddy weddy, ohset aana aana, yessy yessy, darlin darlin".
Any ideas?!

Not your usual creation

Glue sticks, the ones like Pritt Stick are the bane of my life.
J sniffs them out from their respective hiding places, and proceeds to glue any piece of paper he can find.
You have to be very careful with paper work as if left lying around he will have it and rip it into pieces ready to make his masterpiece.
Book covers have been decorated with ripped bits of paper.
He has glued pictures to mirrors.
He runs the glue through his hair for that sort of 'wet look' gel effect that was popular with boys in the 90's.
He will request "sticky time" when he sees the art and crafts come out for scheduled play with his middle brother.
We made a candle the other day from an empty cardboard tube, a bowl (to stick it to ) white paper to wrap around the tube, sparkly stickers and felt pieces, reflective paper on the inner tube, and some very shiny orange card which the flame was cut out of.
He would sing "happ birfday to youuuuu" and then try to blow the candle out.
I shop a lot at Hobby Craft for all kinds of different arts and crafts and I can get creative too which is always fun!

All smoke and mirrors

Have you read the story about young Celyn Vincent?
She is the six year old child who was used by David Cameron during his Conservative campaign.

Celyn is blind, quadriplegic, has epilepsy and cerebral palsy. She is also a human being. And a much loved daughter.

Celyns mum has been very vocal about the lack of respite care for her daughter and feels let down by David Camerons promises.
You can read more here -

www.bbc.co.uk/news/uk-england-bristol-12239905


In another article it has been quoted that "The prime minister has said he will write to a woman who says she may have to put her severely disabled daughter into care, as she can no longer cope."
Well that is going to make all the difference isn't it Cameron(?). I mean, the promises you made to Riven (Celyn's mother) whilst face to face with her (which came to nothing) must pale into obscurity when you are going to write to her. Will that be Cameron writing personally, or will it be a lackey who is given the task, and takes away any real empathy or personalisation?

The state this country is in, and the state Cameron and his party are continuing to make worse for those who need more, he really did do a good spin job on being elected.
And as his adviser, Lord Young said only recently, " Recession? You've never had it so good" , is showing the true Conservatives of 2010/2011 to be just as clueless, out of touch, and sneering to those with special needs as the Conservatives before the massive Labour landslide in 1997.

I have been party to people who have commented they do not like those that feel sorry for themselves, and that we should be grateful for living in Britain.
Every single person with whom I have heard this or similar from do not have a child with a disability. They do not have any clue as to the hardships involved (and I am not just talking financial). And really, most parents of a disabled child do not feel sorry for themselves, rather they feel sorry for their son or daughter who is struggling in our society, who cannot lead a life that those commentators can, who rely heavily on being cared for, and that their future is one of doubts and fears as to what it may hold for them.
If you have a friend who is a parent to a disabled child just be that little bit more sympathetic to them, include them in your life, make them feel a part of the circle, as we get excluded from so many other things, friends should not make them feel that way.

My first complaint of the year

Well, as my New Year Resolution stated I am not taking anymore brush offs or messing around from the very people that are paid to provide a service to help and support special needs children and their families.

Today we had an appointment booked with the new paediatrician. The appointment had been given to me via a letter from their offices back in the begining of December.
At the bottom of the letter, in bold lettering, is a warning that if you fail to turn up for the appointment or do not give them adequate notice of cancelling it means the appointment is wasted as it could have been given to another child.

Now, I abide by the rule of 'practice what you preach'.

Thirty minutes before the appointment (which had been arranged to be held at J's school), I get a telephone call from the school to inform me that the paediatrician had'nt turned up, and so they telephoned the offices to be told that the paediatrician was in a meeting and the appointment had not been recorded in her diary.
So it was cancelled.
Had the school not chased up her lateness would have meant me wasting my time getting to school and waiting around as neither the paediatrician or her office were aware of this appointment, the very appointment they had made and sent out to me.

So, I have called the offices and asked to make a complaint.
I was put through to someone who would help, and when transferred was cut off!

Eventually I speak to the person responsible for initiating a complaint and she took down my details.
I felt that it was being belittled slightly, but you know what (?) I don't care.
My complaint is now going to be treated correctly and I will receive notification shortly, via letter, of the outcome.
As explained to this woman, I am no longer putting up with this continued poor service and standard of treatment.

I am the next generation Victor Meldrew!

Mirror Man

J loves mirrors and surfaces that reflect.
I catch him admiring himself, posing, turning his head from side to side and pulling funny faces.
He loves to use my Iphone and take hundreds of photos of himself, doing the same pose, and all within the space of a few minutes. His latest pose for the camera is with his foot up towards the lens and his hand over his mouth, in a kind of 'gasp' expression.
I find my camera roll filled with these images, or of the back of the dogs collars.

Not quite sure it will make him money from those arty galleries, but then again a dead sheep pickled in formaldehyde, or someones dirty knickers left on a mock bedroom floor is'nt what I would call art, let alone pay for the privilege to see in person.

J has a penchant for wearing visiting peoples coats and shoes (if they have taken them off). He is quite the picture in a pink fluffy mac and court shoes. You will catch him posing in front of the lounge mirror, admiring himself in the new outfit.
If the visitor kept their shoes on J used to lie on the floor next to their feet and stroke and touch the pattern or the fabric. He once went loopy for this health visitors sequin encrusted ballet pumps, and after me trying to reassure her that he was harmless and just loved the colours and sparkle, I could see she was perturbed and so I battled in trying to keep him away from her, whilst holding a (then) baby O and chatting about his develpoment.

When he was younger he had a toy pushchair. He would don his builder hard hat, take my hand bag and sling it over his shoulder, take the pushchair into the garden, and pose with one foot resting in the seat part of the pushchair and stand there, sometimes looking at his reflection in the patio doors. He performed this ritual daily for quite some time.

I suppose there is one positive for J not understanding life and social expectations and that is that he won't become embarrassed by my stories of his antics or photos of him in these unusual poses.

Hair

Okay, the title may be boring you, but here's a little funny annecdote from J and his little ways.

I recently cut a fringe into my hair style (if you can call a basic all round shoulder length cut a 'style') and upon looking at my reflection in the mirror J ambled up to me to look in the mirror too.
He clocked my fringe and turned to me and his head tilted slightly and a little frown appeared.
He reached out to my hair, took a gentle hold of a section, and pulled it. He continued to pull on my hair, looked puzzled, and then almost shrugged, let go and walked off.
I am not sure whether that was a good remark or not, but at least he noticed (!).

O, my middle son, noticed as well and commented "mummy you look pretty, now". I like the pause and the "now" especially.

Siblings

It has bothered me for some time about the effect J and his autism has on my middle son O (as yet my baby son is too young to understand).
I have asked about support groups for siblings and have been told that there is indeed a group run by the local disability team but it has criteria set out that means O cannot attend it until he is at least seven years old. I do not know if there is a waiting list for this group either, so it may not even be plain sailing to access this once he turns seven.
To summise this group would be to say it is open to all siblings of special needs children (with mental disabilities ) and they meet up every fortnight/four weekly and socialise amongst themselves, talking to staff, swapping stories, gaining support and understanding, and not feeling isolated and embarrassed because of their sibling.

O for some time has shown awareness of J and his special needs. It has manifested with him using the excuses "mummy I have a different brain that is why I did X,Y or Z".
A few months ago I felt he was ready for 'the chat' (and not the usual puberty one that we all have to face at some point). I explained about autism in its simplest form and used J and his mannerisms and behaviours as the guide and reference for him.
It worked and O went around telling people "my brother has autism that is why he does'nt talk".

But how to tackle the emotional issues O must be feeling when he has J laughing at him when he is crying? It is a cruel thing to have someone laugh at your misery, but I cannot let it 'go' because of the autism. O needs to see that J is not being given special treatment for bad behaviours, but then again J cannot be punished in the usual sense and does not understand language in anymore than a basic command.

I have been loaned a rather fab book however and must say it is almost written for us.
It is called 'My brother with autism' and is written by Louise Gorrod.
I have read it to O and nearly every page related to our home life with J. Locks on the doors, ignoring you, screaming in public, people staring and tutting, lack of empathy when upset (laughing at you) and his need for space and quiet for certain noises.

This book had bridged a gap between my little chat and the long wait to join a group for siblings.

O will (and in time baby W will also) need to be guided further through the ups and downs of life with a mentally disabled sibling and I really do hope this group is worth the wait. I tend to try to not put all my hopes into it as with all the cuts being levied by councils and the governement it may not have funding at the very time we become eligible to attend.

I realise when O moves up through school, other children will become little bullies and taunt him. It seems almost inevitable it will happen. For every wonderfully raised and polite child there is another who has parent/s who swear openly, put down their children, laugh at people with disabilities etcetera and foist upon their offspring this disregard for others.
An example occured only today at home time in Os school playground.
A boy of Os age was being walked out by his father (I presume) and the man said the following to him after the boy accidently walked into a woman - "oi dickhead, move out the way you knob, stupid little sh*t ".

If parents are not willing to raise their children with a sense of decency and kindness then what hope does that child have for the future? They (possibly) will become bullies themselves and use similar language to taunt others, and all before they reach secondary education.

I, like most other parents of special needs children have so many fears of the future, but this should not be one of them.



I have a disclaimer for those that think the word 'bully' is a label that should'nt be used. I refer to the following -

'Bullying consists of three basic types of abuse – emotional, verbal and physical. It typically involves subtle methods of coercion such as psychological manipulation. Bullying can be defined in many different ways. Although the UK currently has no legal definition of bullying.
Bullying can occur in any context in which human beings interact with each other. This includes school, church, family, the workplace, home and neighbourhoods. It is even a common push factor in migration. Bullying can exist between social groups, social classes and even between countries (see Jingoism). In fact on an international scale, perceived or real imbalances of power between nations, in both economic systems and in treaty systems, are often cited as some of the primary causes of both World War I and World War II. [6] [7] Put simply, historically and from this perspective, certain international 'bullying' between nations is seen as having resulted in at least two very major and costly international wars.'

A New Year - A New Change

Well having pondered over J and the professional help he receives ( or not as is sometimes the case) I have chosen this year to be the one that I no longer allow us to get side lined, forgotten, brushed off or given a less than adequate service.
It appears that I am not alone in feeling neglected, ignored and poorly treated by the service providers which are there to (supposedly) make our lives easier.
For every positive story from a parent there is at least three negative stories. This is not balanced.
Yes, there will never be a 100% top notch quality service for everyone, but when the standard of professionalism falls way below the accepted expectation then managers need to be addressing their failings and work to provide fast, reliable solutions and ensure that those that are within their care receive proper, trustworthy and promised practices.

When I talk of professional services I refer to the following -
Doctors/GPs
Hospitals
Dentists
Paediatricians
Social Services (disability team)
Speech Therapists
Occupational Therapists
Psychologists


I know I tend to complain in this blog, but it is my blog and I choose to take issue with those that are paid and trained to work for us and our children.

There will always be the excuse (and yes it is a plausible excuse) of lack of funding.
The Governments always cut back on these vital services and local Councils follow suit. I have blogged before about my opinion on these cutbacks.
But, when it comes to a simple promised telephone call of reassurance and finding out how you are (note the promised part) that never actually materialises, it means you then have to call them to enquire as to their whereabouts, and you are told they are 'on holiday/out of the office today and not back till tomorrow/in a meeting' (delete as appropriate).

When people leave their post, the person taking over their job seem almost incapable of carrying on where the other has left. Okay yes it is hard settling into a new position and work environment, but when you choose to work in this field you take on a responsibility of care to children and adults with learning difficulties and their stressed out, tired, desperate families.

Hospitals and Doctor/GP surgeries need to have a White Paper on standards of care and codes of practice. Throughout the country there is a shockingly poor tally of complaints about the treatment of staff to special needs children and adults. From a blog I wrote a few months back about our trip to A&E I can recount the way I was treated as if I could'nt know better than the big boss lady as I was only a mum. What these book trained doctors need to realise is that a mum of a special needs child (or any child for that matter) does know her child, far better than any qualification or degree.

This year is my year of taking no bull, no spin and no messing about.
I will be that pain in the arse who calls weekly for updates and progress reports, I will be the one that stops being sidelined or forgotten about. I am doing this not to be beligerent but because I owe it to my son.