The Challenges That Come With Independence

So, its been a while since I blogged, all reasons beyond my control.
Well, Little man is officially a teenager now. On the 1st October he turned 13.
As a result his special school felt that he was ready to make a huge step forward into the world of independence.
Instead of of being collected by the school bus every morning he would walk to the train station through the park, take the 20 minute train ride followed by short 5 minute walk to school. Was I hesitant? Of course I was, what mother wouldn’t be? You see, little man had an intense ‘Special’ interest in trains that lasted many years. He was therefore very excited about this big new step he would be taking! Me I was worried sick that firstly we may find him over obsessing about transport once more. It may seem harmless to most but when a child with Aspergers is obsessive nothing else in the world matters.

This however was not my only concern! Little man is a child that struggles to sleep of a night time and if he had experienced one of he’s ‘All Nighters’ then how could I possibly let him ride the train to school? He could fall asleep and spend hours going back and forth to Hayes and Central London… What if he woke up in central london? At least if he was getting collected our morning battle would come to an end once I’d physically removed him from his bed and got him on the transport. But he hated everything about the new transport system, the one he had been placed on this September with little warning of any changes! Little man was used to taking a taxi with two other children and an escort which is provided for by the councils SEN team. This September no more than one day before the return to school he discovers that his escort has gone and will be replaced by another. He also discovers that there is no longer a taxi but a mini bus with a new driver and a heap more kids too. The battles to get him onto the bus were anything but easy! The last week before his independence training started someone from the SEN travel coordination team called me to say that little man was on his last warning! Apparently the new escort couldn’t handle the children, especially little man. I hear a fight broke out between my son and another boy. As a result the escort was pushed (not by little man but another child who as a result had been taken of the bus for good).

So, with this and little man’s pleas I decided that the transport plan drawn up by the school would probably be best at this current time.

To cut a long story short, since little mans been taking the train his had more days off than I care to remember! The first few days were fine. He loved the feeling of independence traveling to school gave him (he still does) however, his sleep pattern has once more gone up the wall and getting him out the door has been a fight that I’m losing. Even when he has left for school his been leaving late. With this and the constant warnings, Little man is on his very last chance and this time its with me!

I’ve made the decision to reintroduce the melatonin despite how its effects make him more drowsy during the school day. What else can I do? It gets to 4 am and I’m seriously at my wits end! Just the other night (well, I say ‘night’ but really mean early morning) I found myself screaming at him… “Why can’t you just go to sleep?” Only for him to look and me and reply “I want to but I can’t… I just cant.” its frustrating… Its frustrating for him, for me… And for the school, especially when they can see his a bright young boy with heaps of potential.

I find myself becoming so angry at life, for we go through these battles, get over them only for them to resurface months later. Its one hell of a rollercoaster, one I have no choice in riding.

Little man doesn’t tend to talk about thinks that may have upset or confused him during the school day, which sadly can lead to all sorts of difficulties, leaving me playing the private eye game. Switching of isn’t easy for most, especially when we have worries and troubles laying heavily on our minds. This for little man, a boy who has difficulties expressing them worries, a boy who already lacks precious sleeping hours, is a struggle on a level most would fail to reach. Its stuff as such as this that makes those morning and night battles that little more difficult than it currently is.

I do sometimes wonder how many other parents there are out there… Going through the same nightly and morning battles that we do. I know there are plenty but at times its a real lonely place.

SEN Reform Aspirations – You Decide!

So, yesterday, I appeared alongside little man, in one of our local newspapers! This was for two reasons, #1 in celebration of my success at becoming a Mad Blog Awards finalist for the Second year running, and #2 the governments (Department of Education) update on its pending plans for Special educational needs (SEN) known as the “Green Paper – Support and Aspirations”

It’s this I wish to expand on, here on the blog today!

OK, the government published it’s progress report on the above paper, earlier this week. Reading the report I still find myself worried on a number of different levels.

Now, although I’m up for the whole idea of children with a disability or SEN receiving support up until their early adult years (25 years of age) the overall majority of this progress report still strikes me as worrying.

Excuse me but I can’t seem to shrug this niggling feeling I have at the back of my mind, that this is either some kind of money-saving tactic, a way of shrugging a degree of responsibility on to somebody else, or just an ill thought out process! What’s more it’s in my opinion that some of the most important issues remain unresolved or somewhat unclear let alone progressed!

Actually it would seem that some of these proposed changes, are anything other than changes at all!

For example: section 2 giving parents control!

“parents will have a clear Choice of school with equal rights to express a preference for any state funded school”

Ok, so we can make our preference known and the local authority has a duty to meet those preferences… Right?

Hang on a minute… That is unless

#A It’s unsuitable to the child age, aptitude, ability or sen

#B Incompatible with the education of other children of whom the child would be educated

and lastly… the all important factor, the get out of jail free card…

#C An insufficient use of resources

Mmm… Isn’t that how the system is meant to be working already?

Does this system actually get families anywhere currently? No

That’s why I thought we were meant to be changing it!

Scanning through the entire proposal, it seems a lot of the stuff we need changing isn’t actually changing at all, wheres the things we don’t want changing (just slightly amending) are being scrapped altogether!

These seem to be the things us parents cling to when trying to obtain efficient education for our children (remember the law states efficient is all our children require)!

A great example of this would be the graduated approach (School action & action plus) which is all set to be removed leaving parents of unstatemented children quaking in their boots, and rightly so!

So, why has the government made such a decision? This is due to their worries concerning labelling or should I say “Over labelling” Although to some degree, I agree that this is a problem to some extent, I’m also worried that this will stigmatise those that have a genuine need for additional support, support that only that of a statement can offer.

Yes we’re hearing about extra funding to train sencos and teachers but is this really enough assurance for the parent of the unstatemented child, the one that has no legal rights if support is offered or not?

We just can’t categorise these children, it’s not one size fits all! Regardless of a child’s disability, special educational needs or even attainment, every child is different! Not every child with autism requires SALT, not every child with dyslexia requires extra TA support. I remember my son always being compared to a fellow child with Aspergers in his “then” mainstream school! My child badly needed extra support with speech and language mainly due to his literal understanding of language, but because the other boy didn’t require such help, I was told little man didn’t either! I fear many will be over looked just as they are today with the scrapping of school action and school action plus. Both needed to be amended, as to allow the parents more confidence in the system, but this… I cannot see the benefits to the parents, just the governments budgets as the numbers of children with statements (soon to be EHCP) falls the piggy bank belonging to the government will fill up nicely!

I remember what it was like fighting for that statement, it was tough, I really don’t see much in the way of making that fight any easier when reading this proposal.

Looking at how the government has so far messed up in nearly every other area, it looks like its gonna be a bumpy ride ahead, so hold on tight parents, you can’t afford to let go.

UPDATE..THE BIG INTERVIEW

This is a update for my post new features.

The big interview… The date for the first big interview is 28/2/09 This is a feature i have been looking forward to. It’s always great to hear peoples stories. I love reading interviews regarding ASD. It’s gonna be fab as i will get to hear everybody’s views and personal experiences relating to the condition and as a parent to a child on the spectrum i think i could learn some stuff as there’s always something new to learn about ASD.

The first Big Interview is with Cale Irwan a young guy of 20 who is on the spectrum. He has the condition Aspergers! Cale tell’s me what life was like growing up with Aspergers. He talks about school life, sensory problems, motor tic’s and more.

This is a interview i advise you not to miss a must read and a great look into one boys life with Asperger’s.

Cale irwin’s interview 28/2/09

LOOK OUT FOR UP AND COMING INTERVIEWS. WANT TO GET HEARD? GET YOURSELF ON THE INTERVIEW LIST EMAIL ME AT

parkinson.claire@yahoo.com