Don't Settle for Second Best

I have had several appointments these last few weeks, for both J and his youngest brother W.
The same topic cropped up at two of these appointments, and that is of the lack of choice of who we get to see, and the difficulties imposed if you attempt to be transferred to another specialist.

After many, many years of seeing these specialists, I now know the ones worth their salt. The ones that work for the children that they are assigned, and not just sit there like automated robots, ticking boxes, not listening to you, and who seem to be as enthusiastic as a person waiting in the dentist chair.

We saw a pediatrician for J, and she told me she is scaling her work load back quite dramatically, as she is going to take on more of the paperwork side rather than the front line work. I did tell her how much people like her were needed in this line of work, as she has been the only one I have ever fully trusted with her opinion, advice, recommendations, and attitude. It took us three pediatricians until we were recommended her, and it took a few words from me, via telephone to the pediatric offices, to secure an initial appointment with her in the first place. The day we met her was like a breath of fresh air. She fully 'got' J, she totally respected him, and she spoke with passion and a wealth of knowledge - she later told me she has been working with children with autism for over 25 years, and this shows.

Then earlier this week I took my youngest son W to see a speech therapist. W, as I have blogged here (click to open in a new window) before about, has Nystagmus, which causes him to have a severe vision impairment.
We had seen a speech therapist before, via the NHS, and this woman told me that he didn't need any input from their service for a year or so - I later found out that the funding and resources for SALT (speech and language therapy) in my area is chronically poor, and that this therapist has no choice but to push back nearly a third of those needing immediate help, as they just cannot facilitate us all.

The therapist we saw this week was one recommended via W and O's (my middle son) independent (fee paying) school. This is not done under the NHS, and it means I meet the costs myself.
I am thankful I did, as after an incredibly intense and thorough assessment , it appears that W doesn't have a speech delay because of his eyes, rather it's an oral motor delay -something to do with limited movement of his tongue, and also a break in the line of what he hears, to what he speaks.
I was devastated that I had missed this, as I have become such an advocate for my children, and to not realize that he had limited tongue movement made me feel inadequate as a parent.
This could be totally unconnected to his Nystagmus, but as the Nystagmus specialist said last year, he believes that W doesn't have 'classic' congenital, idiopathic Nystagmus, but that there is something else, and that the nystagmus is just a part of it, not the main problem. He also said he doesn't believe that J and O's disabilities are connected and that it is just the way it is.
It has made me question as to whether there is a complete break in the pathways between the ears/eyes/brain/mouth, and that is why he is having difficulties with speech.

Now when I say W has a speech delay, it is not the same as J's, not the same at all. J has no interest in communicating unless it is a request for food, drink, an item, or to tell me he is unhappy about something. His words have become clearer over time, but the will to talk is not there, and that means no conversations, no chit chats, no interest in my day, no interest in telling me his day - although I don't believe he has the capability to tell me these things, as the level of his learning difficulties would suggest this isn't possible.
W wants to talk, and does so. He asks questions, mainly "why?" at the moment, to every single thing!
He can answer questions, tell you what he's done at kindergarten (Kindy as we call it), wants to chat to people, and basically has the skills expected of a neuro typical child. I don't believe he has any form of autism or Aspergers, and so his speech delay is one of the will being there, it's just the way is struggling. He tries so hard. And he gets so frustrated. It breaks my heart at times, which is why I decided enough was enough, and that if the NHS couldn't provide the help he so desperately needs, I will pay for it myself, and forgo more little luxuries to pay for this. Don't gain the impression I am rich. The boys school fees are no where near what you have seen published by tabloid papers such as the Daily Mail. For us, cutting back a lot on simple things such as haircuts (I do my own and the boys), not going out to eat, not buying non essential items, and being a savvy shopper, I can afford to pay for them.

So it has clicked with me ; why should we put up with poor specialists and poor treatment? Who says that the pediatrician you are assigned is the only one you can see? If you don't gel with them, or they just seem inadequate in their skills, contact your local pediatric office and get a new one. Don't settle for somebody that has no interest in your child, and merely mutters a few words, ticks a few boxes, and sends you on your way for another six months.
If you clicked the link above to see my previous posts about W and his Nystagmus ( this is the link again - here ), you will read about the pediatrician he first saw that was more concerned about his bowel movements than that of his vision loss!!)

The basis of the NHS is fantastic. Most of the front line workers are passionate and caring (bar some of course who I have mentioned). It is certain management areas and the government that is letting the rest down. Underfunding the most desperately needs resources, but pouring cash into areas such as cosmetic surgery that is not life or death, rather an 18 year old girl who wants bigger breasts.
When you read about the elderly being left in hospital corridors for hours/days, young adults with learning difficulties, who live in special accommodation, starved to death because no one bothered to bring them food and help feed them (this is via agencies that are paid to visit and help them!), people dying in their bed on a ward, and not being discovered for 24-48 hours - it is bad! It is poor. It is disgusting. Priorities of those in power are skewed, and it has to stop, and it must change.

But as I digressed slightly there on my soap box, the point I was trying to make was ; I have decided to withdraw W from the NHS pediatric system, and have found a private pediatric Dr who was recommended by several parents, and other specialists. Yes I will have to pay for his service, but if it means W is treated with respect, understanding, and thought, then it is worth it for me.
We are due to meet with the Nystagmus specialist again in a few weeks, and I am hoping he will look further into W and what he believes he might have. At present I am thinking ocular albinism, but that's just me and my Google head doing lots of reading and research - this specialist has taken up a five year stay, to research Nystagmus, and he has been published several times (I have read some of his papers), so I trust he will do his best by W and if it's something else W has got, I am positive he will find it.
I must just add that even though I am keen to delve into whether I am to blame, and that I am carrying a genetic disorder, it doesn't change anything about my boys. What it will do is give power and choice to them when they start a family. I am not a label fanatic, more that we are still waiting for the genetic tests to come back from the major study we were asked to join (three years ago), and that is all. You can read more about this from my previous posts, here, here, and here (I do like my links!)

Finally, as a witty ending to my mini moan, I created this little ecard which I think is fairly apt for most of us special mums (and dads too, but 'dad' doesn't rhyme!).....

The New Teachers - Super Teachers!

J has been in his new class for a while now, and he has calmed down a lot, and seems much happier than before.
There has been a shift from purely negative comments and devaluing, via his previous teacher, to such wonderful, joyous comments from his new teachers (he has two who share the week).
It makes me feel secure that I did know my own son, and that he was not happy, nor was he  receiving adequate, suitable teaching in his old class.

To compound my own views, I had a meeting with his current teacher and the Head Master of the school, in what is known in the UK as an Annual Review. We have one a year, with those responsible for J's care/education. The actual write up had been composed by his previous teacher (as it had to be written a few months in advance of the actual meeting), and it had a very negative opinion of J and his skills.
I was so impressed by the new teachers, who when reading through each section of the written views from the other teacher, actually spoke out, disagreed with many points, requested the HM change many parts, all for the positive. It was such a relief to see two teachers who knows their stuff, and who can see J for what he is, not what some unprofessional professional person thinks he should be.

One of his new teachers told me that she takes J, and several other children, to the local supermarket. He is given a basic shopping list (at present it has pictures on of a carrot and an onion, but will progress to more items), and money, and he takes a basket, selects the items, and takes them to the cashier till.
He copes extremely well she says. He doesn't have any comprehension of money or its value, but he is coping well with this small exercise.
They then go to the store cafe, and J is given a list of what drinks to buy, and again is given money.
 The big issue with these two exercises is that J cannot put any other item in. That in itself is very hard for him, as he adores chocolate, loves picking up a four pint of milk, and adding some Twiglets to the trolley/basket. He doesn't attempt to do these at all, and it impresses me how well he deals with that - he doesn't have a melt down at all, and breezes through.
As for the cafe part, it must be incredibly tempting for him to add some biscuits or a cake to the tray of drinks, but again he doesn't.
He carries the tray of drinks over to the waiting table of other students and teacher, and hands them out.
This small independence task is an excellent building block for him.
He will never be allowed to go shopping, local or supermarket, alone, as he has no danger awareness, street safety, his social skills are not superb (but then take a look down many streets at nightclub/pub closing time, and many of the drunks exiting do not exhibit many social skills either!) and he doesn't understand monetary value and the difference between coins, apart from their size/colour.
But, what this is doing for him is enabling him to deal with the hustle and bustle of a supermarket, complete a shopping list, and understand he must go to a cashier till, and not just walk out of the shop with his items.
The shop staff have even begun to recognise J and his fellow students, and a few will give a cheery "hello" and a smile to them. This again helps with their socialising skills.
When I mentioned to the teacher that I dread shopping with J as people stare, tut, comment, or even push J, she did say that there has been a few negative remarks hurled their way, and usually from little old ladies. The teacher said she ignores them totally, and does not allow these tittle tattle battle axes to spoil the children's outing.
I did say to her that my stock response to any person who comes out with the classic line "in my day...." is to interrupt them, and say , "yes in your day it was common practice to lock up children and adults with any mental illness or disability in awful, frightening, abuse ridden asylums, and many families completely deleted any evidence of these people from their family history". That usually shuts their bitter, sour faces up!
 
 Another breakthrough these super teachers have achieved is to get J into a swimming pool. He was tentative at first, but then, all off his own choice, got into the pool, and moved away from the side. He floated around and played with various pool toys.

It's amazing how the right teacher/s (and at his old school every teacher was the 'right' one luckily, which is why A) he developed and learned so well during his time there, and B) I have such high expectations of the  teaching he should receive at the new school) can bring the best out of a child, that another has written off as useless.

As parents of special children, we seem to have to fight a lot of the time to get appropriate help, care, education and respect, and from what I hear from parents of young adults with special needs, the fight continues on once schooling has finished, and you enter a whole new world of battles. It will never stop, but then, that is my responsibility, as a parent, to fight for the rights of my child, no matter how old they are. I may grow older and wearier from it all, but I will never lose my smile or my spirit!

Just A Few Quotes

A.U.T.I.S.M

Here's something I made. I've seen the other 'autism' word breakdown quite a lot over the last few years, (Always Unique Totally Interesting Sometimes Mysterious) and wanted to find a new spin on it, so this is mine!

Steam is Coming Out of My Ears!

I wrote a blog post about a serious case of abuse that occurred at my Boy's place of  out of school hours, club, a while back.
Well late last year I discovered they had started using an old image of J, standing alongside the convicted paedophile, on their website!
Needless to say I contacted them and the image was removed within minutes of my making contact.
Today I receive a letter, asking me to update J's details with them, and that he was still classed a member of their group, despite me requesting all details be removed at the time the abuse came to light, around two years ago.
This is yet another slap in the face from them. It proves all my claims about the mishandling of the scandal, and the senior staff attitudes towards the parents and children that they purport to support.

 Sadly this world still views children and adults with learning difficulties as second class, and that it 'doesn't really matter' if abuse occurs towards them, as they don't understand anyway.
If that seems harsh, then I will also tell you that the senior manager of this place told a parent, during the height of this scandal, that she was not running a charity, but a business - funnily enough it IS a charity, seeing as they are registered as one, ask for donations, and make the claim on their website.

I still will not name this charity, as it is unfair to tar the national name, with the local subsidiary group that is run by them, and for whom I have had all these problems with.

I am cautious about charities that are on Facebook and Twitter, that claim to support autism. Did you know that even if a charity gets a registered charity number/status, it does not mean they have to donate all or even 50% of the donations they receive? There is one charity that I have become aware of on Facebook that only donates 5-10% of their annual received donations. I have witnessed their censoring of people's comments on this too.

Phone and Broadband are Connected!

I have been absent from this blog for three weeks, due to a fire that occurred opposite my house, in the cable junction box at the top of the telephone pylon. It wiped out my phone line and broadband, so meant I was down to using my iPhone for all calls and 3G to connect to the internet.
I couldn't use my laptop to make any new blog posts as it relies solely on broadband connection.

Yesterday the telephone company finally came out to fix it, and this house breathed a massive sigh of relief!
It makes you think back to the days before mobile phones and the world wide web. How did I manage to grow up in the 70's/80's with just that television computer game that was similar to tennis but just had two white lines and a ball that pinged back and forth?!

It has been the Easter holidays here, so we have been able to get out and about quite a bit, and because the weather was so mild, we spent many days at the beach.
J went back to school today, and has now moved to his new class, the one I had requested several weeks ago. First impressions of his new teacher are all good, and I hope he can go back to be happy at school, with none of the stress that was caused by his previous teacher.

 I will try to do more writing for the blog over the next week or so, but life is still the same, and J is still J.

World Autism Awareness Day 2nd April

World Autism Day

It is World Autism Day on the 2nd April.
I thought this picture was rather good though!

BT Van Driver V My Friend!

Just a quick post today, but I thought this reply to an ignorant person parking their van in a clearly marked disabled bay, which has been specifically put outside a friend of mine's house as she is entitled to one, was really rather good, and a retort that I think a lot of us should remember the next time we encounter an incident like this.....

You'll notice the company is BT (British Telecom), which is one of the UK's leading land line and broadband providers. Their vehicles are very clearly marked. Perhaps a refresher course for some of their staff on the rules of the road?!

My Blog Is FOUR Years Old Today!

Oh my goodness, I have just remembered that on this day, four years ago, I decided to write down all about my life with my special needs child.
So many happy memories have been  made over this time. Of course there have been a few unhappy postings, but I promised myself that I would be an honest blogger, and not create an illusion of anything other than the truth about life as a mum to a special needs child.
Thank you for supporting me through my four years of yapping and moaning!

That 'R' Word

What is it about the word 'retard'? Why do I get angry when it is used by people that understand its meaning, its context, and the way it can offend people?
Would I be so anti the word if I wasn't mum to a special needs child (or two for the record)?
Would I have it within my regular grammar and use it when I felt like it?
I am pretty sure I would still find it one of those words that I wouldn't feel comfortable using.

I have been viewing several videos on YouTube today, many made by everyday folk, highlighting why they find the word offensive and hurtful. Then there was the Penn Jillette video that he had made for YouTube, under his online recording of 'Penn Point'. I would have linked his video, but it does warn about strong language, and right from the start he uses swear words, and I do not link to videos like this - you can find it easily on YouTube if you wish.

Penn talks about the R word and Jennifer Aniston's use of it during an interview. Penn states "he doesn't care about this kind of news story, and he doesn't care about Jennifer Aniston".
He claims the word 'idiot' was actually used before the R word, and to which apparently the R word is the 'nicer' version of idiot. He uses the term"hyperbolic" (exaggerated)  a lot. And if you can stand the continual flicking between his ramblings and his advertising of several products, you can see he is making his point of view quite coherent. However what does irk me a little is his reference to not using the R word in the context of being offensive because - "he and his wife are involved with a charity in Vegas that helps people with all sorts of problems". It reminds me of people that spout off xenophobic or racist remarks and then claim they are not either of those as they have a friend that is X, Y or Z.

I have watched the Jennifer Aniston video of her using the R word, and she does just throw it into her sentence as if she uses it daily within conversations. There was no pause in her speech, which would have suggested she stopped to think about a relevant word to be descriptive. Instead it just flowed freely, which clearly defines it as a regular word within her vocabulary.
This is the link - Jennifer Aniston R Word

Then there are several videos which have children and adults in, talking about their opinion of the word.
Here are a selection I found interesting, informative and emotive -
For Brooke-End the Word
End the R Word
I am a Person
Spread the Word

I would be interested to hear if people (after reading and watching the true face of the R word, and the real life effect it can have) who do not find the word offensive, and either want to 'normalize' its use within the English language, or just find it acceptable, still stand firmly by their own conviction that the R word is fine, and that people that find it offensive are just being overly sensitive.
It will remain an emotive subject for many, and will not be something that can change overnight.
However, the more people begin to use it less, the less people will hear it and pass it on, and maybe one day it will have been phased out - and then most probably be replaced by another equally emotive word (such is our world).

Butting Heads with the Teacher

A lot has been happening these last few weeks. I haven't found the time to sit down and write an entry, and must say I haven't had much of an inclination to even try.
Not going into too many details, I have cancer, one that is under control, and one that is not going to wear me down.

I have had a lot to cope with on the J front too. He has been very noisy, flappy, screaming, and changing moods from extreme happiness to extreme upset.
I couldn't figure out what was causing this. I am usually adept at picking up on what has caused him stress, with many of the incidents being fairly minor, although they are not minor to him.
I had wondered if he was stressed due to him being a part of the annual Rock Challenge performance.
I did withdraw him from the performance as I felt his emotional well being was being hampered.

Unfortunately, he continued to be very hyper and stressed. I began monitoring his moods. Weekday mornings were fine. He ate breakfast, was happy to get ready for school, and was always raring to get going with T, his escort on the transport bus. In the afternoon, around 4pm, when he returned from school, T would tell me he had been a happy boy on the bus, and no trouble.
But, once settled back home, he would become increasingly loud, repetitive in requests, becoming upset at the slightest thing, spitting, and self harming - head banging and skin pinching.
Weekends were filled with noise, flapping, self harm, crying..... almost non stop. He had a phrase he repeated over and over again, loudly, and with intonation, - "Sit down Joseph". He is a very good imitator of people's voice tones, and so when he shouted it, and shouted it with an exasperated tone, I knew his teacher had been shouting it at him! He also never requested to "do lunchbox, yes", something which he had always requested, wanting to be ready for school, and wanting to go to school. This was out of character.

It was then I began to think it was school related. I have had a few doubts about the quality of teaching that J receives, moreso the attitude of his teacher, for whom I get the impression she dislikes J, and will not accept he needs a lot more support and care than she was willing to give.
I have repeated to her over and again that J will not tell me messages.  If she tells him to tell me something, he won't! Not because he either forgets, or cannot be bothered, but because he can't - he does not have the cognitive ability, and never has, and despite being told by me so many times, she refused to believe this. I missed so many important meetings, events, special fun days, because no letter or message in his 'home/school' book was left, and instead J was told the information - precisely why I never found out anything until it had happened, or on the day/ day before, when a reminder text message was sent by the school.

After yet another unpleasant telephone call from his teacher, where she said his spitting was getting out of hand and that he had to have learned this from home, I had had enough.
She had made accusations before this, and I knew right then I had to go in and speak to the Head teacher. For the record, he began spitting a few months ago, and no one in my family spits - it is a disgusting habit and I abhor seeing people freely lobbing their sputum about on the pavement or out of their car window, whether they are trying to appear 'cool' in front of their friends, or they are simply someone with poor manners and a disregard for anyone else - use a tissue if you have to spit something out! There are a lot of children at his school who have unsociable habits, and this is one of them, for which he has copied from.

The meeting I had with the Head went very well. I may come across as bossy on my blog, but I am always articulate and polite in person. I never shout, or lower myself to personal slurs or comments.
It has been agreed that J is struggling with the class he is in. He is not at a capable level of coping there.
My request to move him to a smaller group, with higher staff ratio, and a teacher with better skills at working with children like J who have severe communication difficulties and cognitive understanding, was agreed. He said that there had been a small conversation about moving him to a smaller class recently, as J appeared unhappy, and my visit had compounded this belief.
He will be going from a class of twelve pupils, to a class of six to eight pupils, and a pupil/staff ratio of 2-1 and not 4-1 as he has been having.
He will also be moved into a class which has his soul mate in, the girl I have written about on this blog before. I am in the process of composing another blog entry about this girl and J, and will hopefully be finished in a few days.

This class move was mooted to be arranged for September, the new school year, but I was firm that this had to be implemented and ready for the new term, when the school re-opens after the Easter break.

I reminded the Head that J is never going to be a nuclear physicist and that schooling for him is about learning day to day tasks, not Pythagoros' Theorem. Expecting him to be at a level that is unattainable for his abilities is more damaging, and will not work.
There will be parents out there that disagree with me, and want their child pushed, forced to learn, in the hope their child will become 'clever', but I happen to believe that J is intelligent, just read over some of my blog entries to see this, but his intelligence is focused on everyday living rather than  being able to spell 'floccinaucinihilipilification' and use it correctly within a sentence. Ironically this word means 'the action or habit of estimating something as worthless' - something a lot of pushy parents exhibit!
                                                                                                                                                                        
Time will tell as to whether the class move has solved the stress issue for him. I am aware that puberty is in full swing for him, and that testosterone is raging through his body, but I am hopeful this new class will alleviate a lot of the root cause, and in turn help him cope with the physiological changes occurring to his body.

"I Still Would've Chosen You" - Poem by Terri Banish

More Shadow Drawing

J brought me his magnetic drawer, and showed me this picture he had drawn.
Shadow is the character from Bear in the Big Blue House, a regular feature of my blog!
He wrote her name too.

This is what Shadow looks like in the show -

Teletubbies Writing

I found this writing in J's room, folded up and tucked away.
Visual accuracy when copying is one of his fortes.

Our Home Schooling Project - Solar System

As part of the home schooling I do with my middle and youngest sons, (I part home school, part independent -fee paying- school), we created this 3D Solar System. J participated in his own way, and created his own version of Space.
I had the laptop open for us to look at planets and Space, and all three boys looked through lots of images, with my middle son, O, aged 7, reading the information out.

 This is the finished project for the Solar System. The planets are very

    textured, with beautiful swirls of colour, and being 3D, it looks amazing up on the wall.

This is what J created with the paints available on the work table;  His vision of Space and planets. 

 

More Drawings and an Update on Previous Post

I have had some lovely feedback about my last post. One email was from a staff member from the school J used to attend. In the message, there was an explanation for why J had drawn the picture he called 'Hawwison' (Harrison), with such long legs ; There is a boy with this name that went to J's old school, and is at his current school, albeit the boy is a few years older than he is. 
The boy in question is very tall. He has a growth condition. I knew there would be a reason why J drew such long legs, but my jazzy patterned trouser idea was not to be!

Since I posted J's pictures up, he has been very forthcoming with more drawings.
Some are the same as usual, but two are new ones.


This is self explanatory, as he has written the name of the children's television show he loves to watch on YouTube (as they do not broadcast it anymore, and there is only one DVD available). 
He writes without knowing what letters he is using. It is copying by rote.

When he presented this drawing to me, I couldn't understand or decipher what he was trying to say. I presume it is either from Bear in the Big Blue House, or from The Story Makers. I am inclined to think it is from Bear, and is the Shadow sketch part of the show.
The character's mouth is quite expressive. I am not sure what the lines are meant to represent.
I will one day! It may be years, but I always discover answers to the mysteries of J.....

This drawing is the same as the one I showed in the last post. It is a new drawing, but of the same scene. There are a couple of slight differences between them, which I have shown further down.

I have put the photos side to side to show just how precise he is. There are only three differences I can see. The rest, such as the height of the characters, are the same on both drawings.

              Drawing from last post                             Today's drawing

There are four of these magnetic drawers scattered around the house. J has his favourite one, and will seek it out if it has been moved. To me, they all look the same, but to J, he knows!

New Drawings And Verbalising Them To Me

My Boy has been busy these last few days with lots of drawings on his Tomy Megasketcher.
Although he has used these sketchers for years, it has always been by chance that I find a drawing he created.
These drawings I have shown below, were all brought to me by J. He would appear, hold it up facing himself so I couldn't actually see it (but he doesn't  realise that), and point to the drawing whilst telling me what it is.
I'm so impressed! He has never tried to communicate like this before, and it's brilliant. Before he would only say a word for a drawing if I asked him as I pointed to it.


He pointed to each square and said (from left to right), "Story Makers, Spaceman, Blue Cow".
I know that these are from The Story Makers children's television show that used to air a few years back. I have blogged before about this programme, and the drawings he created from their characters, here.

He said "Hawwison" for this next drawing. He means Harrison as in a child's name. I presume this is a child from his school, and I wonder what made J draw his legs like that. It will mean something, such as maybe this child wore some jazzy trousers, and J has interpreted it in his own way.

 This was meant to be the last drawing I was putting on this post, but as you'll see below, J brought me in another one as I was typing! For this picture immediately below, J said "Liam". Again I presume this is a child from his school.

Now I know this drawing is basic, but it is the fact that J was forthcoming with it after he had drawn it, and he verbalised directly at me. It's little steps, but I appreciate it so much.



Whilst I have been composing this post, J has been bobbing around looking at what I'm doing. He repeats the names of each drawing to me as he sees it on my laptop screen.

He then went off for a few minutes and reappeared with this........

He said "coppewation". He means cooperation. It is a song from Bear in the Big Blue House.
We sing it together a lot. He instigates it, and I then sing it, with him joining in at specific parts where he knows the words. The characters he has drawn are from the cartoon sketch part that features a character called Shadow, who sings with Bear. The character on the left is how it looks from the side profile, and this is his interpretation of it, which I think he has managed to create very well.

To give you an idea, if you haven't seen the show, this photo is a still shot from Shadow's little sketch, where she sings nursery rhymes with Bear....

You can see what he has tried to reproduce. The still shot is not the one he has tried to copy though - I couldn't find an image on Google for his one.

He is sitting next to me watching me type this. Every time he sees his drawings appear on screen, he points and says the name of it. If only he knew this whole blog centres on him! But then if he understood that concept, I wouldn't be writing a blog about his disabilities.....

The Perfect Lego Pieces

These four pieces of Lego live out in the conservatory, on top of the oak buffet bar.
If one piece is moved even slightly, J notices and has to realign them up again to his exacting standard.

The spacing between them is almost perfect, and they are all put on the same area of the buffet bar, along certain grooves of the natural oak.

He can spend a good half an hour perfecting them. Rearranging them, moving a slight millimeter here and there. He bends down to view them from the perspective looking up, and moves side to side.

It's not a new thing for him. For as far as I can remember he has lined up objects, usually four of them, and they had their own place he would keep them, and he always knew if they had been touched.
Four Lego pieces have featured for many of those years though. The same four colours. The actual brick size has changed every so often, with him using the regular sized 4 pin bricks, the 8 pin bricks, and sometimes building a tower of each colour, occasionally in graduating size (example being - four red 4 pins, three blue 4 pins, two yellow 4 pins, and one green 4 pin) or all the same amount ( four 4 pins bricks of each colour).
These bricks in the photo are the double version of the 4 pin Lego bricks, so are twice as tall as the regular brick.

It makes him happy and keeps him calm when he has these in the perfect place and position, and I would never disturb his work, as I understand it is what he enjoys, and I'm not going to spoil that.

A Nasty Fall For J

J had an accident just before Christmas. He fell over and cut his shin quite badly. He landed on some stones, and they managed to lacerate his skin, through his fleece lined trousers.
As it was the festive period, the GP surgery was closed, and I knew the ER would be overflowing with people, as well as the 'walk in' centre (that can deal with minor accidents). There was also the Norovirus in full force at the hospital (a pre-recorded message on the hospital phone line stated this) and I really didn't want to subject us to that nasty stomach bug.
So I took the decision to deal with it myself. I have First Aid skills, and felt I could deal with it.

In the days between Christmas and New Year, I made a decision to have the wound looked over by a doctor. It was healing, and had slight redness to the edges, so I wanted to be cautious about infection.
I took him to the 'walk in' centre. We waited around 30 minutes to be seen by the triage nurse. She was lovely. She said we would need to see the doctor, and that she was going to bump us up the queue as J has anxiety problems and doesn't act in a sociable manner with strangers (she understood all about autism and learning difficulties).
The doctor saw us fairly quickly, and mentioned stitches. The intonation of her voice made it clear she knew stitches would not be tolerated by J. The same with steri strips. Even a wound dressing would be removed by J at the earliest opportunity.
So she prescribed him antibiotics as a precautionary measure, and I would have to gently clean the wound daily, keeping it as dirt free as possible.

As I have worked on J and his ability to swallow tablets/capsules, the doctor prescribed it in that form, rather than the foul tasting liquid formula.
J is such a star with taking medicine. I hold the capsule out for him to see, and hand him a cup of water. I tell him, "J, swallow medicine", and he puts the capsule in his mouth, drinks, and swallows it. Superstar! That has taken years to achieve, but is worth the effort - no more cutting and chopping up tablets into powder and adding to yogurt (he hated that and would spit it out), or having liquid medicine that made him gag from the awful taste (even the banana flavoured medicines couldn't hide the taste.

His wound is healing slowly. I was advised that it could take a few months to heal properly, but the skin would eventually meet back together from each side.

The following part of this entry has two photos of the wound, so you can see what I have tried to describe. They are quite 'raw' so please I apologize in advance if you are squeamish.






                                                           Soon after the incident.

                                                  Day Three, after being cleaned.

Autistic Logic Applied to English Homework

I have come across this photo of a child's school work. The child who is a 2nd grader in the US, (Year 3 in Primary school here in the UK), has autism.
This shows such logic, I find it fantastic.

Can you see what he has done? I hope he was commended for it, after all, it doesn't state his way is not an option.  Autistic brains are so clever.

Merry Christmas! Reasons why Santa has Autism......

                     Merry Christmas!

 

A Handy Guide About Helping With a Meltdown

Design A Christmas Card At School

At J's school they run a yearly Christmas card competition. The children can design their own card, and the winner will be chosen to be made into proper cards, which we can buy.
J spent a very long time on his. I was his mentor and guide, as he didn't want to focus for too long on it. But, with perseverance from me, he brought together all the little bits, and created a cut out tree, with baubles, a star atop, and tinsel, which had wording on each bit which was relevant to the school.

He won!

The design was sent via online card retailer Moonpig, and came back on a glossy card for me to keep.
He also got given chocolates as a prize.

My posts will be short this month as I have a lot going on. I am still available on my email, for which I try and reply to everyone.

Here are two Christmassy themed Autism pictures....

 

The Starfish Story

New Glasses, The School Incident, Genetic Tests, and The Man Sacked After 27 Years.

I have been rather snowed under the last few weeks and haven't had the time to devote to writing a blog entry.
So now, on a Sunday night, lunch boxes prepped, clothes laid out for the morning, hair trimmed, nails cut, everyone fed and happy, I can sit down and write.

W, my youngest with Nystagmus, had his six monthly eye check up at the hospital, and he now has to wear glasses all the time (not for sleep obviously). His left eye is quite long sited but the right is fine.
They have started him on a lower lens as they find it better for the child to get accustomed to the glasses and the new perspective. We are going back in two months time for a check up on how he is fairing, and then another pair of glasses will be made with a stronger lens.

I have been astounded by his complete acceptance of the glasses. He had one wobble on the first day and one incident of being silly and hiding them, but he takes them off at bedtime and puts them on upon waking.
I have caught him just gazing at his surroundings in awe. He has exclaimed several times about the new things he is seeing. I find it equally amazing that a new dimension has opened up for him.

J is still loving his new school. Me however - there has been a rather upsetting incident with his teacher. I didn't warm to her right from the start, when she was rude about my surname (yes , I know stupid!), and she just doesn't seem to comprehend that she is a special needs teacher, in a special needs school, working with special needs children. The ludicrous part is that she expects J to be 'normal'. I am not going in to detail about the hurtful comment she made about J, but suffice to say, she is the first person to work with him that doesn't seem to like him.
I have blogged recently about the transport bus escort and her continual praising of him.
He was loved by staff and pupils at his old school.
He is popular with the children at his new school. Heck even the receptionist at the new school welled up when I took in J's Christmas card design for the competition to win the design being made into cards to sell for the school. She commented on how lovely he is, how much work it must have taken him to create the design etc. He brings joy to people, and I'm not just saying that because I'm his mum!
So I find it perplexing that this woman has such a dislike of him. By offending him (indirectly of course, as he doesn't understand) she has offended me, my mother (his Nana), his father. It really has cut deep.

Before all this, I had to notify the school about bruises on his arms. I could tell they were from being squeezed with hands, and fingertip type bruise patterns were plain to see.
I knew immediately that it was the girl I have spoken about before, the one that is a year above him, and for whom they reunited when he started at this school.
This used to happen at the old school and the staff would intervene there and encourage them to do something else.
So this time, I made a call to the school and gave the receptionist a brief synopsis about the situation and I was transferred to the Head Teacher. I mentioned my suspicions about the culprit, and that I had an inkling as to when this was happening (break times), and that I wasn't angry, as I understand. I just wanted them to be aware, intervene if needed, and know that it is not self injurious behavior or abuse from home.
 So to have his teacher be so rude (unconnected to the bruising incident) hit me hard. I like to think I am a bubbly and smiley person, and am non judging of others.

 I have also been inquiring about the genetic study J was accepted in to, two years ago. We were told it would take around a year for results, but I had heard nothing. Thankfully I was contacted by the local coordinator for our area, and have been informed the samples are now under testing. There was a huge backlog from the amount of people that entered the study.
This study is called the DDD Study and is based in Northampton, England.
We had the standard genetic tests completed on the NHS, and they test for around 1 million disorders.
The DDD Study is testing for around 10 million, and collating information on potentially newly discovered disorders.
I still maintain that any diagnosis does not change anything for us, it just means my other sons will have the choice of genetic counseling for when they decide to start their own family.


On a different note, there is a petition going that is for a man, Daniel White, who has learning difficulties, to be given his job back. The back story to it is, the council department he worked for was taken over, and out of the entire work force he was the only one made redundant.....
He has tended to the gardens in Collett Park, Shepton Mallet, for 27 years, with no sick days. He worked full time, on minimum wages.

                                               Daniel White

His treatment has been disgusting, and all because he has learning difficulties. I suspect the person that wielded the axe had not met him, had not inquired about his work and skills, and so just saw Learning Difficulties, and decided he would have to go. I have read the excuses the new company have given, and they are weak. There are always ways round red tape, always. You just have to be willing to try.
The work Daniel has put in has not being acknowledged, and there has not been any humanity shown.

You can sign the petition here - Petition for Daniel White
Please sign it. Every single signature will make a difference.

The Artist Strikes Again

The little artist has been at it again. This time my wall that descends with the staircase has been used as a canvas.
J has scraped a pattern into the paint, and has revealed the old colour paint underneath.
Not quite sure what he was attempting to draw, or what inspired this, but it is of such a large scale it made me gasp as I opened my bedroom door!
I can only think of a city skyline is something he may have seen at school. I'll never know!

Being a 'Special' Parent

A lady cashier that served me yesterday, asked me how my children were doing. I usually have at least one of them with me when I go to this shop, and she has seen them all at one time or another, and we have little chats as she serves me.

I didn't have any with me on this visit yesterday (thanks Mum for staying at home with them!), and so I mentioned J had been a little hyper due to the half term holiday from school. He needs his routine and the challenge of work to keep his brain calm.

She told me that she doesn't know how mum's like me keep so calm and happy, as she wouldn't be able to cope with a special needs child. She said she has so much admiration for us.

I have heard this before from people. And I've heard other special mum's tell the same story.

We always refute it and say it is just what we were dealt, and we learn to adapt to our new life.

 

What is true is this ;

 

I wouldn't be the strong person I am today, the advocator, the challenger, the supporter, and the voice of my son, if I hadn't been given J and his special needs. I would just be another mum that looked at special mums and told them I didn't know how they coped and stayed so strong.

When you are given a special child your world changes. You do what you have to do, for the rights of your child. When your child cannot communicate with words, you become their voice. It is just another facet of being a parent. It is what being a parent is about. We all have our challenges in life, and this is mine.

 

 



 

 

 

 

 

 

Justin Fletcher (Mr Tumble) The Hero of Children's Television

There is a children's entertainer in the UK that I have to write about.
He has provided the voices of many characters, both animated and costumed.
His name is Justin Fletcher.

                                           Justin in his day to day clothes.

Over the last 15 years or so, he has either acted as himself, as various acts, or provided voice overs for costumed actors and animated shows.
He began working on the CITV show, Fun Song Factory, with Dave Benson Philips, and in my opinion this was the hey day for FSF, as it wasn't as cheesy as it's successor was, which had stage school youngsters whaling through 'pop' songs. Dave Benson Philips was a great presenter and actor too.

       A very young looking Justin in the Fun Song Factory.

The BBC1 show, The Tweenies, had Justin voicing the characters of Jake and Doodles.
His most recent voice over he has done is for an animation series called Olly the Little White Van, and I can detect tones of his voice he used for Jake.

Tikkabilla and the spin off, Higgeldy House, were fantastic. He and Sarah Jane were a great duo, and even now, 10 years on, it is still a very much loved programme in our house, loved by J, and now by W, my youngest son aged three. J is quite calm when I put one of these on for him to watch.


                                              The Tikkabilla Presenters

He then became 'Mr Tumble'. Oh Mr Tumble, what a fabulous creation. Loved by children, and parents too.

                                                                   Mr Tumble

Such a basic premise, but one that enthrals and educates young children, with no patronising.
Mr Tumble has brought a whole new world of special needs to the fore.
Justin learnt Makaton - sign language - and uses it throughout his show, Something Special.
As the show progressed, and the audience of fans increased, Justin introduced more characters, all played by himself, and all related in some way to Mr Tumble. Granddad Tumble, Fisherman Tumble, Aunt Polly, Baby Tumble, Lord Tumble, and my favourite, Cliff Tumble, which is based on Cliff Richard, the legendary music man for over 50 years - Justin really plays him up, much to my amusement.
Bright colours and Justin's natural warmth make it a winner. The children that appear alongside him all have a disability, and it educates the children watching the show, that our world is diverse, and that we can all learn together.

Gigglebiz and Justin's House followed. He got to show his talents of acting many different characters, male and female in Gigglebiz, and it was aimed at slightly older children, as it had lots of silly humour.
Justin's House had a live audience of youngsters, and was very slapstick/pantomime based, which children love - adults too!


                                                                        Gigglebiz

Animated series' he has voiced recently are Timmy Time (BBC) and as mentioned before, Olly the Little White Van, and Shaun the Sheep (BBC).

If you have a child with learning disabilities I highly recommend the series Something Special (Mr Tumble) and you can watch episodes on YouTube, as well as buy DVD's from Amazon, eBay, and the BBC online shop, to name a few.
This is a link to the programme Something Special on YouTube.

As for the marvellous Justin Fletcher, he was awarded an MBE from the Queen for services to Children's Broadcasting and the Voluntary Sector, in 2008, after a petition was started online. The then Prime Minister, Gordon Brown, had an online petition page where people could choose a subject of their own, and if it gathered over a certain amount of signatories, it would be motioned. So people power worked. Justin deserves his MBE. Even if you do not find you like his programmes, you cannot deny he has a flare and talent for communicating with special children.


                       Receiving an MBE from the Queen in 2008

Justin Fletcher, you are a hero to so many mums like me. You treat our special children with kindness and respect. Your characters and shows are wonderful to watch, and unlike a lot of shows aimed at children, you don't rely on recorded laughter tracks, screeching stage school teenagers over acting, or cheesy, schmaltzy,  moral stories.


                                          Thank You, from myself and my children!

My Review of Scope's Education and Learning Together Toolkit

I have been asked by Scope, the UK based charity for children with disabilities and their families, to review their website section, which is called - ‘Scope’s Learning Together toolkit’, and which provides information on the integration of children with disabilities into mainstream settings, and then give my personal feedback about it.

I firstly will say I think it is very easy to read. The layout is simple, but effective.
The paragraphs are concise, but content rich.

As I have two children with (different) disabilities, I am pleased to see that my youngest son W, who has Nystagmus ( the involuntary eye rotation and vision impairment), is also included within the education section, and how parents and school staff can make the school environment a safe, happy, and effective learning place for a child with vision impairment or loss.

Autism is featured more and more nowadays, (from when I first heard the word back in 2004), and Scope have created a very reader friendly information section on this. As autism is being diagnosed more and more, mainstream schools do have to develop their attitude, support, and provisions, as there are children with autism that can attend a mainstream setting, but will still need that bit more help and understanding.
My cousin has just started working as a primary school teacher, after gaining a First Class Honours BA in Primary Education, and she has two children in her class that have been noted as having extra needs, but there is no teaching assistant to help her. So she has a class of 30 children, and has to provide extra support and help to these children, and also teach the other 28 alongside. The Head of the school decided to remove all teaching assistants as a cost cutting exercise. So every child that attends a school with the same provision in place, will suffer. Money over a child's well being and education has reared it's head again, and will not benefit anyone apart from the Head and her budget book.
Scope gives practical advice for parents and education providers about this complex issue, and it could benefit families that are in a quandary about education provisions.

As Scope is for all children with any disability, they have to be quite broad in their information and advice.
If Scope talk about a specific document or form, they provide a link within that paragraph. This means if you want to continue reading through the website, but don't want to forget or lose where this information is, you can click it, it opens in a new page, and you can then go to it as and when you want, whilst moving on through their website.

I am asked to give any suggestions I may have.
The main one I adhere to, which applies to all children, whether disabled or abled, and beginning a new experience of education settings, is to listen to your child. Observe them. See how they respond. Take your time with decision making over education. Allow them time to adjust.
Let them have a good transition time frame. Don't rush it. You must feel confident in the care provided. Your child will show you if they are happy or not.
It is fantastic to read about what to do, how to go about it, but a parent really is the best advocate for their child, as they know and understand them wholly.
The information available on  Scope’s  Learning Together toolkit will empower parents and carers, who may feel in the dark about the education provisions, or parents that want that bit of back up that bolsters their opinion on what they want their child to gain from school.
So perhaps a little bit about trusting yourself and your feelings, when it comes to your child with a disability, would be valuable.

If you want to have a look for yourself, this is the link I have discussed - Scope's Education and Learning Together Toolkit

I would have benefitted immensely from the Scope website and their Education and Learning together toolkit 10 years ago. The help and advice was patchy and very sparse back then. I empowered myself by searching for information, having publications sent from the US for me to read, and by believing in my ability to recognise what was right for my Boy.
What Scope have provided is fabulous. It is almost a 'one stop shop' for help and advice.
I hope their address is given out more readily to parents beginning on the road of a special needs child, as it could be just the thing for them to have to hand, and to see the future more clearly.