When Life Gives You Lemons.........................................

When life gives you lemons, suck hard and wince!!!! Life sometimes doesn't wait to be invited to stop, it naturally puts on the brakes and you find yourself ploughing into the back of the person in front of you!!

This last month we had our 'Bob's review, new medication,  launch event of the Parents Forum, developing 'Bob's revision techniques for GCSEs, and lots and lots of SEN information to read.  I have chased my tail that many times in the last four weeks and flown by the seat of my pants, I should be wearing my knickers over my tights and a red cape!!  Not that I am saying I'm Superwoman, far from it!  I think SEN mummies wear red capes all the time, not too sure about the knickers though that would be above and beyond the call of duty, and very bizarre!

I have dealt with child and adult meltdowns for a variety of reasons; some completely off the wall and others with good reason, and I have had to hold my hands up and take responsibility for my own actions.  Uncomfortable, yes! Necessary, yes! Life changing, you betcha!

I have had some incredible conversations with some incredible SEN parents who take Warrior Mums to another level.  Inspiring and touching, making me realise the need for parental support can be such a lifeline for so many families, and such a rewarding thing to be a part of.

I have reached into my own emotional suitcase more times than I cared for this last month, know it still hurts, but I'm able to carefully put it away until the next time.  I have struggled to know when they all need to come out and come to the conclusion that whilst they are safely boxed away they can all stay there a little bit longer.

SEN life is changing for so many families, and it's ramping up at a right rate of knots.  Awareness and readiness are going to be crucial to successful implementation, there's no stopping the world this time, it's ploughing its way through into September and beyond!  I truly believe in working together, the new buzz word is Co-production and its threaded through the new SEN Code of Practice.

SEN parents need to be at the very heart of these changes, and involved in the delivery of services for their children and young people in equal partnership. Our local authorities need to realise that although they may have the expertise, we as parents have the knowledge of our own individual children and that is invaluable! Parents as Partners; Working with, Not to!

And the journey begins.....

There is this incredible difference between thinking about something and it actually happening.  I’ve been preparing myself mentally for our ‘Bob’s transition from what seems an age.  Still struggling to come to terms that my little man is now standing taller than I, and his shoe size is bigger than Mr Autynary’s!  A couple of things have happened in the last couple of months, which give us just a snifter of what is to come.

As many parents in the UK will be familiar with when our little angels or terror teens, whichever is your preference, enter Year 10 there is a rush to prepare them for the ‘outside’ world.  An experience, hopefully in a field of work they are interested in pursuing when the leave education.  I’m sure there are many of you out there know that when you rush something quite often there can be oversights. So when  Mr Autynary and I trundled off last November to the Year 10 work experience parents evening full of hope and exciting thoughts for our boy, what we didn’t realise was the difficulty he would experience in connecting with those typical jobs offered for work experience placements.  After the event we both knew that the information given did not fill us with the reassurances we needed to feel comfortable that ‘Bob’ would find this process accessible.  Shuffling down the queue, and it was quite clear we weren’t the only ones feeling that  way.  Conscious that the person we needed to speak to would identify us as parents of a child with ‘special needs’!  So uncomfortable was that turn to the right!

Our ‘Bob’ was dead set on trying to find his placement within Manchester Airport, he had it fixed in his mind and that this is where he wanted to go and there really was no backup plan.  There was plenty of confusion about the whole process, which just compounded all his anxieties.  There was an expectation that the students should take the lead and have that experience of sourcing placement, researching contact information, putting together their CV and talking to potential placement employers.  For ‘Bob’ that was just not going to happen, and he had convinced himself that it was up to me and Mr Autynary!  If you ask him about himself or ask him to make a decision, his response will be

 “Speak to her”, meaning me!

‘Bob’ does not favour conversation face to face, so how on earth am I going to get him to talk to someone on the phone!  Well, it didn’t happen, I can tell you, flat refusal!  The moment I raised the issue, he got into an almighty meltdown and shut down.  It would take days before we could even slip it into conversation, and with the constant fear that we would upset him we only manage this when he was in really good spirits.

I knew it was up to me to start this ball rolling, I’d already informed school, we were having difficulties, but we still felt that although they were talking to ‘Bob’ about it in school, there was an expectation that he had to complete this himself.   It’s the ‘doing’ bit that was the problem and it was practical help we needed.

 

Taking the bull by the proverbial horns, I spoke to the work experience placement officer at the Airport.  She was a nice enough woman, somewhat patronising and after asking me where we lived and what school ‘Bob’ went to informed me that we didn’t meet the Airport’s criteria because we were out of their catchment area.  Interestingly enough, she then followed this through with informing me about the criteria of other employers, and typically they would insist on speaking to the young person concerned.  By this point my defensive hackles were up, and I had to explain that ‘Bob’ was on the autistic spectrum, to which she said

“Well, you have to say that one in the first place!” “You still don’t meet our criteria, though!” and “Well employers will still need to speak to the young person!”

Ya’don’t say Sherlock!! 

By this point I am livid and with desperation started flying off messages to people I knew who might be sympathetic and help!  Then I’m outraged, if I’m struggling how many other parents of young people with Asperger’s or high functioning autism are having the same difficulties.  When you actually start to strip back the logistics, support for the young person and risk assessment of the individual needs, the process takes on a different dimension.  One which I think has been overlooked!

How many parents out there in desperation for their children to experience the same journey like their peers, are relying on taking them to their own place of work, or family or friends!  Even more upsetting how many children are left behind at school?

‘Bob’ is now resided to the fact that there is no hope!  I have had some contact from great supporters, but yet nothing has been forthcoming, and conscious he won’t be left behind I’m resided to the fact that he will have to come with me and experience one week working as a volunteer!  Not exactly the industry our ‘Bob’ wants to work in when he leaves school, but if it means he will experience the process of going to work and a working environment then we can tick this off.   Worryingly though how many young people with autism do just that, volunteer, because there are not the employment options out there!  Food for thought.

It's My Anxiety and I'll Cry If I Want Too!

It's been one of those weekends.  I've got over my first blog nerves with the help from another super blogger, still waiting for the bubble to burst to be honest, grappled with my own insecurities because I hadn’t received any comments. Y'know the ones, everybody is too polite to say anything or it wasn't bad enough for anybody to take the time to slate it.  So off I went to seek validation from those who know me so well and love me.  I thought to myself  "these guys will tell me how it is, I hope!" They did positively.  Phew! Though one response from the green-fingered Mr W caught my twinkling blues "...trying to leave a comment on there..". Hmmmm, let's take a look at this baby then.  Several hours later, I had my very own meltdown, felt like an absolute numpty!  Nobody told me you had to switch it on!!

So if you feel the need....go give it a try, I'm waiting!!!**cheeky wink**

As I said, one of those weekends, the lull before the storm that is going back to school! I ALWAYS leave it to the last minute, my thinking behind it; it only leaves days to cause major anxiety meltdown!  Our 'Bob' has over the years finely tuned his meltdowns, we have had the screaming in my face, throwing himself on the floor, finding the ability to launch the most minute missile and make it hurt, and we have had the hours of sobbing and the relentless chunnering to name but a few.  So our latest is to become VERY LOUD, critical and we GO ON, GO ON, GO ON.

Our antecedent - the dreaded school blazer. Our behaviour - firm resistance.  Our consequence - haggling.  You may well ask! My son has got haggling down to a fine art.  In order for us to even attempt the rather crowded store, we haggled a one size one try, so choice of size mattered.  Did I need other stuff? Yep you bet your purdoody I did!  The queue was the longest one I have ever seen in there, and by the looks of the other parents, they had the same idea too! We lasted 2 minutes, one choice, quick try on, and Mr AUTYnary and Our 'Bob' were exit stage left. Leaving me standing on my lonesome.  I did have a little chuckle to myself, as some poor bloke had quite clearly been sent by the wife with said child in tow - mission school uniform.  Bless him he kept taking pictures of different sized blazer's on the child, then talking to mobile, taking it off trying another one on.  All this whilst standing in the queue, now who said men can't multi-task!

 I finally get out and go to seek out Mr and Master AUTYnary, where are they......no bloomin' idea! Gone! By this time I am really cheesed off.  I'm wandering up the street and who comes strolling round the corner; you guessed it Tweedledee and Tweedledum!  Looking very pleased with themselves, our 'Bob' asks for £1.50.  The pair of them had been in the charity shop and had found a lock for the den.  Do I dare mention at this point we need a new pair of shoes?  Nah let’s get the charity shop over and done with.  Besides I knew the response.  The suggestion of going into a weekend packed shopping centre just created an almighty kerfuffle, and that was just the senior of the pair.  The upshot, shoes from last term are in reasonable condition so we are having to change the laces and give them a good polish, school bag is still relatively hole free and we can't possible choose one because someone else might have the same and it would cause confusion, so we don't take the chance! I get "Shsssh'd" and "don't embarrass me" "What are you on woman?" "You're making me anxious!”  So why is buying new every school year important? Is it for me or him? On reflection I'm the one who is concerned he fits in and doesn't stand out anymore that he already does, I'm the one who is conscious he dresses like the other teenage boys because somehow he will be more accepted...who am I kidding!  He just wants to be secure, comfortable with what he knows, he has anxiety about the return to school and all I'm doing is making it worse.  Lesson learnt, stop waiting for the last minute, be smart, change my tact and listen!  He's not a young child and I need to remember that.