Amazing Things Happen - Alexander Amelines

I've come across a fabulous short animated video, which was created by Alexander Amelines.
It is titled 'Amazing Things Happen', and is very descriptive and informative about what autism is, and how a person with autism thinks and feels.

I highly recommend you watch it, and it may be useful in educating school children, as well as adults who may want to learn more about it. Just being able to empathise with how someone with autism sees the world will be a positive step.

This is the link, which will open a new window, and take you to YouTube - Amazing Things Happen

The Worry Of Them Growing Up

When J was first diagnosed with autism, and I was at the very beginning of this journey, there was very little 'real life' information about. There was the odd leaflet and paragraph in a medical journal, but it was hard to find first hand information from people, as there was no Google, no online forums, no online groups, and as he was so young, he only attended a mainstream nursery, so I didn't get to meet other parents who were in the same boat as myself.

There were no groups to attend for his age, as the only specialist horse riding group was for ages 8 and up, and as he was 3, five years seemed a long wait for any social input. 

The very sparse information I gathered from various sources was always quite daunting and even scaremongering at times. 
I've mentioned before that the first professional we saw, for a very brief meeting, diagnosed autism within 15 minutes, and handed me a leaflet about it. This leaflet was doom and gloom. The author had nothing positive to say. The basis of it centred around what your child with autism won't be able to do or achieve :- 

• No marriage.
• No children. 
• No career. 
• No friends. 
• No social life. 
• No real life.

It was tough reading, and for such a small leaflet, it crammed in as much negativity as it could.

As we moved soon after, our new GP disagreed with the diagnosis, and said 15 minutes was not sufficient time to make such a sweeping statement. 
We ended up attending a weekly session at a centre that had trained staff who interacted and observed J and the other children at this gathering, and over the course of a year, a firm diagnosis was made. 
Yes, it was autism, but this time it was based on extensive observations, and not a rushed, brief chit chat.

During this year, I got to meet other parents, with children who had similar difficulties as J. 
I was new to this, but it was good to share fears and worries with others who were in the same boat. 

One conversation we had was around the worry of when they turn into teenagers and beyond. 
The strength, inappropriate behaviours,and violence they could have. 
It was discussed about teenage boys masturbating in front of family or in social settings, and how to encourage them to keep it to their bedroom. I dreaded the day this happened. 
I shall keep it brief and without too much graphic description, but it is safe to say I have not had anything like this happen. Yes, J does 'pleasure' himself, but it is always in his bed, under his cover, and never in front of his brothers, or myself. He has learnt a natural human act that brings pleasure, and has the understanding (from his own thought, not having been told) that it is a private matter, kept away from others. It may be hard for some to understand what I've written here, and why I am so blase about it, but J has no interest in finding a partner, and will more than likely remain a virgin, so for him to find a normal, human response for physical pleasure is a good thing in my eyes.

I mentioned the conversation above, about violence too, and had prepared myself for his behaviours to escalate into dreadful incidents of me having to try and restrain him, and being too weak against his strength to do so. 
This too has not materialised. Yes he is a tall (he can touch the ceiling without going onto tiptoes), broad shouldered young man, and yes he has strength (he opens bottle lids that I can't, and carries heavy boxes for me), but he doesn't hit out, doesn't hit me or his brothers, doesn't deliberately break things, or smash up the house. 
He isn't anything like the scenarios I had been filled with fear about. 
He is noisy, and as he has such large feet, you can tell what room he is in, just by the thumping of his feet on the floor or staircase, and the echos of Barney the purple dinosaur's "I love you" tune on constant loop, emanating from his iPad. These are easy to live with, and I am thankful he is such a laid back young man (yes he does get stressed from certain things, but I do my best to either eliminate certain triggers in the first place, or anticipate and intercept them, and use diversion tactics to minimise the impact). Every day is a learning curve, and I have to keep my eyes and ears alert for any trigger, but it's worth it to keep him calm and happy (which directly impacts on his brothers too, so keeping a harmonious house keeps everyone happy). 


Going back to the doom and gloom leaflet, I can see that J isn't going to have most of the things they said he wouldn't, but on the flip side, and keeping with my positive attitude around autism and learning difficulties, he is :-

• Happy
• Contented
• Safe
• Stress free
• Loved
• Respected

These are important, and should be celebrated, rather than looking for all the negatives. It can be hard to accept the things your child may not achieve, or to live the life you wanted, but look to what they can do, look to what they enjoy, and keep positive that their path may not travel along everyone else's path, but this is their journey, and their life, and we have to do our best to enrich it, and support them, and most importantly to love and respect them for who they are. 

Special Needs Schools - A Big Thank You

Here in the UK the school summer holidays have begun. Six weeks of trying to find activities to keep your special needs child/ren, (and your other children) occupied, and yourself sane.
There appears to be a lot of play schemes for 'neuro-typical' children, which come at a price, but a scarce amount of schemes for children with additional needs. These play schemes are very sought after, and are over subscribed, meaning that your child may only get a few days awarded. This isn't enough sadly, and is something I may explore further in a future post.

J, over the years has begun to learn about the times he doesn't go to school - he understands when I say it's the weekend (although his concept of time is something I'm not sure has developed). The school holidays are a long, drawn out, unwanted time for J. He would be happy attending school every day. The routine, and the stimulation from lessons keep him active, both mentally and physically, and I cannot replicate that at home.

This leads me on to special schools. I cannot make a sweeping statement in regards to every special school in the world being superb, but I make my own opinions based on the SN (Special Needs) schools J, and my youngest son W, have attended.
J has now reached the end of his schooling, and during this time he attended three SN schools.
His first was when he was just a little boy of three, and he started in their 'Rainbow' unit, which was a nursery setting, but in preparation for him beginning school there. This school was lovely. I remember how easy it was to get him his EHCP (Education, Health, Care Plan - formerly known as a Statement), and how the school was suggested, I visited, loved it, and he was accepted. This easy route gave me false hope of the future though, as since then it has been a lot more stressful trying to get him and his youngest brother further help that is essential to their needs.

When we moved, he joined a new SN school. He thrived there, and to this day I am still in regular contact (and like to call them my friends) with several of his teachers and support staff, and they see J's development and progress as he has moved through his secondary school. That school has since grown and grown, not just in pupil numbers, but in the building space. It is testament to the quality of staff, leadership, and skills that that school is in great demand.

His final school was different to primary, as it needs to be, and the shift from the cocoon of primary school to the more independent, 'hands off' approach was something I struggled with. J did at first too, (I wrote a post about it years ago, but to surmise he was placed in the wrong class setting - it was too academic, and expectations of achievement were far above his cognitive level). After requesting he be placed into a class that was aimed at his level, he thrived. His destructive self harming stopped (which had flared up when placed into the wrong class), and he loved going to school again.

My youngest son's SN school is however my favourite by far. Maybe I am biased, as I am quite active within it, but the reality is that the school has the balance of education, care, staff, and leadership, spot on. When people give me the 'head tilt' and sorrowful expression when they learn I have two children with differing special needs, I tell them about the sheer joy and determination of all these children at their schools. The notion that a SN school must be quite sombre and sad is most definitely the opposite.
Being within this school's grounds makes you happy. It is joyful to see all the children, many with complex health needs, being loved and respected by everyone else - staff and fellow pupils. 

I decided to write a post today, thanking all these people who work with our special children. I went around the houses a little to get to this point, but it is something that needs to be said.
We as parents, no matter the child (whether they have a disability or not), need to have trust in our school's staff, that they will care for our children just as much as we do.
Special education staff (especially those who are involved with my children) are an elite group of people, who work tirelessly to support the children in their care, and who champion every achievement, every success, every 'little' goal, and who treat all the children with respect.

I will finish on a short poem/quote I came across recently, that resonates with me quite deeply. I had it applied to two gifts I had made by a lady who hand stamps letters onto metal, and gifted them to two specific people who work with my youngest son, and for whom I have so much admiration and respect for. They both have an innate gift of seeing the potential in special children, encouraging them to be their best, and I wanted them to know just how much I think of them.

A Major Decision Decided In Secret

Throughout the UK, most, if not all local councils, offer a transport solution for children that attend a special needs school. These vary from council to council, but most are either a taxi cab, or a larger 8 seat van, with some being modified to transport children who use wheelchairs, or have mobility needs.

Quite by chance, I was visiting my local council office to discuss my youngest child's EHCP (Education, Health, Care Plan - formerly a 'Statement of Special Needs'). 

As I sat in the plush lobby, with a lot of very important looking people hustling and bustling past with their lanyard identification cards dangling from their necks, I noticed a small screen TV, mounted high up, away from the main seating area, which displayed in a sequenced rotation, information about the local council and their plans. 

As I was sat, with time on my hands, as my appointment time had already overrun its scheduled start, I casually gave this TV glances every so often. It was on one of these brief glances that I saw something about a consultation around Post 16 transport. Post 16 means any child that is going to college, and who has an EHCP in place. 
The rotation continued onto the next piece, and so I sat waiting for it to come back around. I took my phone out and prepared it for the camera, so I could take a photo of the screen, to allow me time to then read what it was stating. 

Luckily, as my appointment was still running late, I managed to capture a photo. 

The information on the screen told me that the consultation would end in two days time. I had not been made aware via mail, email, telephone, or any other means, about this. I made some enquiries, and discovered that those that would be directly affected by their proposals, had not been contacted at all, and very little had been done to publicise it all.
I have the feeling that despite formal consultations being there for people who may be affected by certain proposals, and allowing for opinions, views and debates, there is a tendency to keep them as closed and as secret as possible. Is this democratic? Does this reflect their values of giving vulnerable people of society a voice? 

That evening I duly completed the online form, giving my opinions, but feeling that despite opposition to their proposals, it would be futile. 

In the details about the time frame for their decision, it was clearly stated they had to legally publish the results before a set date. This date came and went, and upon calling up to speak to someone, I was told that they were still debating the issue. They had 10 weeks from the close of the consultation to make this decision, and it took a further 4 weeks until they had an answer. 

This then impacted on any applications for Post 16 transport requests, and yet again, a further 'exceptional circumstances' required form was required, but was not forthcoming, and the closing date for this was a mere few days away. 
I can be cynical at times, and it appears to me that as many obstacles, delays, and assurances were used to pass this new rule, and to hinder those that potentially could qualify. 
For those that do 'qualify' for transport, there is a cost, which is a block amount for set miles, and increases with each mileage band. The cost can be over £1300, which is demanded up front, with no option to pay monthly. 

I have begun to hear from other parents that they have been refused their new transport request, with reasons being given such as - 'the child's college choice isn't the closest to their home'. 
What needs to be remembered is that these children have special needs, and therefore their closest college may not have the additional support and guidance, and even courses that these children can receive. They have chosen a college that fits their needs, but this is not considered by those in power. 

It has been suggested by those that oversee the transport that J should receive a concessional bus pass, and he should get to his college via bus. Considering it further, J still has very little road sense, and would not understand about delays, different buses for different routes, and would more than likely be vulnerable to abuse from strangers for his 'weird' noises and behaviours. He could even get off at any stop, see a shop, walk in, and take some food or drink and walk back out again. He's not competent in making his own way to college, and needs to have transport fit for his needs. 
I will also quash the option of him being transported by myself every day, as I have another school run that is in the opposite direction to his college, and I cannot be in two places at once. The other school run child is too young to make their own way to school, as they'd have to use two buses and a train to get to their school, and have a long walk along a dangerously fast road (which doesn't have any barrier between road and pavement). 

I will find out shortly if J qualifies for transport, and I'm prepared for the struggle to appeal their decision. I am keeping some hope that it will be good news, and am keeping in mind that I will have to telephone them to ensure nothing has happened to his application, or decision, such as being 'mislaid'. 

Leaving School For College

The day arrived. 
One I had never believed would come around as quickly as it did. 
My Boy had finished school. For good. He is off to college. 
How did this happen so fast? Where is my little boy who looked so small and innocent in his new school uniform, not wanting to look at the camera and smile, all those years ago?

We all know (and hope for) these milestones to happen, some of us wish for them sooner than others, but nothing can prepare you for the emotions you experience around your child being at the end of their schooling. The cocoon of a special needs school. The warmth. The acceptance and understanding. 

The big wide world is out there, and whereas other children who have completed their exams, are now off celebrating with their friends and enjoying the freedom, my Boy doesn't feel any relief, or sadness. He doesn't want to go off with his friends, and attempt to buy alcohol and impress the girls, or boys.

J's school had a whole week of celebrating the end of school for Year 11's. Each day they went somewhere exciting and fun. A big theme park, a BBQ in the forest, trips out, and a Prom. 
The Prom didn't hold any excitement for J.
He wasn't aware of what it was, or when it was happening.
I had chosen a lovely pale (olive?) green, short sleeved shirt, and some smart black trousers for him to wear. 
As with a lot of new clothing, J tried it on, and then promptly hid it, which is his way of telling me that he does NOT want to wear it! 
So, five minutes before leaving the house, I encouraged him to get dressed into the clothes, and he had no choice about changing out of them, as he knew he had to get into the car.
On the drive there, he was repeating, "hello Prom", as I had told him that was where we were going. 
It was only half way there that it dawned on me - he doesn't know what a Prom is. He may well be saying "hello Prom", but it could be anything. I could be taking him to a new shop, or meeting a person called Prom.
So I said, "J's going to a party!". He understood this, as he repeated the word "party" back to me, and then said "cake, blow out the candles".

The Prom was lovely. Very lively, with the children dressed up beautifully. A lot of the staff where there, not just the teachers from the Year 11 classes. 
All of the children were accompanied by their parent/s or carer, which in the eyes of a lot of Proms isn't much fun, but the children needed a little help with certain things, and it made it easier to keep everyone happy, and enjoying themselves.

J sat outside, enjoying the sunshine, at his Prom.

After an hour, J had had enough. We had posed for the obligatory photos, drank some cola, nibbled on the buffet, and worked our way around the staff to thank them for all their dedication into J's life at his school. 
We left early, but it was the right time to leave for J.
The second we stepped through the front door at home, he stripped off, and got dressed back into his usual clothes!

In the morning I was sent a link to our local newspaper, and in the side bar, with the heading of J's school Prom, was a photo of J! I was overjoyed, but also shed some tears (I'm a wuss when it comes to the pride I feel about my boys and their achievements). 
Out of all the wonderfully dressed children, my Boy was chosen to be the lead photo. I had worried that he wasn't as smartly dressed as the others, but knew that he would not have tolerated a suit, a tie, a bow-tie, or anything 'jazzy'. 

That morning was also J's 'Leaver's Assembly', and it was very hard to not cry (I'm not one for public displays of crying). 
On a huge projector screen, in front of all the parents, school leavers, staff, and a few other classes from the Year below, we were shown photos of our children, right from their first year at that school, all the way through to now. I could see a lot of tissues being dabbed around eyes, whilst I determinedly blinked mine back.
It was beginning to 'hit' a lot of us - realising that our 'babies' were all grown up, and how much they have grown and developed over the last five years.

Each child was called up to the front, where the Head Teacher presented them with a 'Record of Achievement' book (it contains all their certificates over the last five years), a huge wooden framed photo of all the Leavers, and an A4 booklet which had a lot of their photos in, as groups. 

When J was called up, he didn't turn around to face the audience (some students didn't want to). 
After being presented with the above, the Head proceeded to tell everyone how much J has grown at school. He said he'd never forget J's turn as the Giant, in Jack and the Beanstalk (where he put a very funny spin on the "fee fi fo fum" speech, and made everyone laugh), and I could see both children and adults laugh at this, recalling this from the Christmas concert last year!)
He described J as a 'gentle giant', who doesn't like large crowds, needs his space, but is kind, helpful, and a comedian in his own way. 
As the Head was about to tell everyone where J is going off to college, J walked off, back to his seat, which again had people laughing, as the Head said, "well J has obviously had enough of me talking!" 
My Boy can make people laugh just by being himself. Whereas we would be polite, and wait, J thinks to himself, "I've had enough, I'm off". He's honest at least!

As the cliche goes, it's the end of an era. 
We are moving rapidly towards the end of his education completely, and that is where my worries about what he will do, where will he go for stimulation and entertainment? A day centre once a week isn't going to keep him occupied and active. I know I will be proactive and search out what there is for him when the time comes, and I can only hope there will be something suitable.