Helping Hands

Helping hands don’t often come along but recently two have found their way.  A boost from a great, experienced advocate full of encouragement and support who is helping us parents get together to form a forum.  A councillor who has a child with Autism and his wife who want to make a difference and are asking for our help.

I’ve watched them sit and listen to the stories that I hear so often from fellow parents.  How the smallest of cuts are so deep and so destructive to a family. How preventative services or as one parent called them “stitch in time interventions” can make such a difference and save the public purse money.

I once visited my local MP.  It was just after the last election and the idea of “the big society” was unveiled.  We have a fantastic family support worker from an autism charity who supports over 900 families.  Her salary is paid by the local authority.  At that time they wanted to stop her funding, hoping that us parents would step in and provide the support that she gave and that we would do our bit for “the big society”.  We do what we can but even with the best intentions 900 families and our own to deal with for no salary would be taking the proverbial.  So I popped along to see my local elected representative.  

He was polite and a tad posher than me.  He didn’t exude ”man of the people “  I pleaded my case explaining how with no support I’d lost my marriage, my job and almost my sanity and how the role of family support worker can help prevent  that.  He explained there was no real proof of that, it was all subjective so likely to be cut.  I explained that although I didn’t have proof I knew the money had been wisely spent because we were seeing less families in crisis and if that support was withdrawn all the money and time invested would be wasted.  He asked me where they were supposed to get the money from so I suggested that perhaps they should stop building their shiny new council offices for now and use a bit of that money.  “but that would be wasting money, we’ve already invested a great deal on the plans” I pointed out that he had just presented exactly the same argument as I had.  His secretary smiled out of the corner of her mouth and he sighed.  He said he would “take a look at it”.  A few weeks later he sent me a letter saying there was nothing he could do. I sighed.

Thankfully the family support worker was saved at the last hour and her role is still helping many families in the borough. But as for the holiday schemes for disabled children, respite services, intervention teams etc, etc they’re facing being part of  another nine million pounds worth of cuts locally.  I hope that the tears that were seen today and the stories that were told will provide better proof than statistics or outcome measures, charts or tables.  Investing in the lives and futures of children with disabilities may not bring huge profits but compared to some dodgy investments that brought this country to its knees, I’d say those who hold the purse strings need to adjust their attitude to risk.

And those in glass houses, well………

Life never stays the same.

 

Life never stays the same, that’s a mixed blessing.  Transitions are an unsettling time for anyone. One of my favourite books is The Catcher in the Rye.  I have a huge desire to be a “catcher in the rye” for my son right now.  

Recently we said goodbye to our hospital’s paediatrics team who have looked after my son and monitored his difficulties for the last 14yrs.  The nurse had to stand on a chair to measure him and his knees reached his ears as he sat in the children’s weighing chair, it only seems like yesterday when his feet used to dangle.  He donated his huge Thomas the Tank Engine train set (including trains!) to the paediatric department and the children’s ward where he had spent quite a bit of time in his younger days. He said it was “just like Toy Story III” and I was a little choked when we walked out for the final time.  

My son attends an amazing school that provides him with all the support he needs.  He has built up a good group of friends there. Any parent of a child with Autism will tell you how much it means for their children to have friends.  He wants to leave.  He wants to go to college to study carpentry.  We have to choose a college.  I haven’t been sleeping well.  One interview with the ”Head” of Supported Learning at a college quite local to us didn’t go well.  The “Head” kept asking my son to look at her, something he can’t do when he doesn’t know someone well.  When I asked about bullying and my concerns about my son being with mainstream students she told me that “You can’t wrap him up in cotton wool all the time” it would be something he’d have to learn to deal with. 

It has taken my son most of his life to find his identity, to feel accepted, overcome alienation and be happy with who he is. The loss of all of that would be devastating for both of us. So I’m sorry Mrs “Head” but go boil. Oh that feels so rebellious.  Mainstream will have to fight the battle of acceptance too. It’s not “wrapping him up in cotton wool” it’s about being treated respectfully and equally and having someone by your side when that doesn’t happen.

I might just have found that very place, but it’s early days and there are more sleepless nights ahead.

"Them things you hide ain't hiding"

http://www.youtube.com/watch?v=JEiBdU0tFB0

Sometimes you hear something that makes you stop what you’re doing and the hairs on the back of your neck stand up.  An instant connection, a recognition.  When I first heard Kate Tempest on Channel 4 speaking her Poem, The Mouse Hiding Out In The Lions Hair I was struck.  Struck by the amazing wisdom in one so young and the way she put the world into words.

I’ve tried twice before to see her but was beaten back the first time by a badly timed ferry and then stress related stomach cramps on route to The Round House. But last weekend there I was sitting in a setting that Shakespear would recognise, far away from life’s madness, hanging on every word.

Then Monday morning, back to the madness.  I’ve been busy of late with the new jiggery pokery that is The Children and Families Act 2014 part 3.  It states that Local Authorities must now consult with parents about the new Education and Health Care Plans and The Local Offer that are both to be drawn up.  I have been a bit of a mouse in the last few years, hiding out.  I’ve been to my fair share of consultations and stakeholders meetings in the past where parents are tolerated but not taken seriously.  I’ve sat in meetings where “professionals” have talked openly about their feelings towards parents and I’ve been shocked.  I’ve spoken up but it always felt like a squeak and a risky one at that when your child is under their power. So I threw in the towel.

Time heals they say or makes you forget so when I was asked to sit around that table again a bit more worldly and knowledgeable I found my voice a little stronger and I invited some of the most wonderful people I know along to add to the wisdom.  The Local Authority made promises and asked what documents I’d like to be sent to review.  The documents on education for the Local Offer never arrived until after the deadline and the drafts of the Education and Health Care plans arrived just in time for the summer holiday when us parents are caring 24/7 for our youngsters.  All an administrative error, apparently.  Spare me the indignity of such a poor and patronising excuse.  But nevertheless we met up, we studied, we took advice from the Special Educational Needs Code of Practice and managed to get a report together to send out to them before the deadline.  There was hope, I was proud that we’d all managed to juggle things around, gone through the stress of leaving the house for 3 hours one evening and put our heads together.  

We got there too late apparently and our views will not be taken into consideration until the next review in December.  Until the general "them and us" attitude is put to one side and we are respected as equal partners in this, change and progress will be restricted which is sad for children, young people and adults with SEN and disabilities.

But in the meantime as Ms Tempest would say “them things you hide ain’t hiding” and we will be jumping in between the lines and reading books that are so open they are shameless.  

Being a parent of a child with Autism can happen to anyone…….anyone so why treat us like we’re different and less?

To shave or not to shave......

I’m the only female in my house, even the dog  is male and the recently departed goldfish.  I feel comfortable but outnumbered.

Nobody told me what to do when I was little so I chose to do everything, as much as I could.  From playing hospitals with my dolls to being a sub in our school footie team, - we’re talking 70’s here.  I played guitar and recorder, messed around on a wooden handmade go kart, spent all day on roller skates and wiped the floor with my male peers at Judo competitions.  I was tall, athletic, always had long blonde hair and liked to watch my Dad and my brother work on the car.

Then the hormones arrived, so unfair.  Boys started to treat me differently, if I wanted to work on a car, kick a ball about or heaven forbid work in IT well then I must be a “geezabird” or a “dyke”. They’d be happy to whistle and shout at me in the street but when I argued that they’d put the wrong type of tyres on my old Moggy they told me I couldn’t possibly know what I was talking about and when I told them I bloody did they refused to serve me.  How unlady like!  

In my mid-teens women like Annie Lennox and Sinead O’Connor came onto the scene, I took one look at them and knew what to do.  I put on some DM’s, half shaved my head, coloured my hair deep purple and copied the makeup of Siouxsie Sioux.  They had the answer.  I wasn’t about to conform to the female stereotype of the time. It was about female sexuality on our terms.   

I discovered there were men who loved it and accepted it, never belittled it and let me work on their motorbikes.  I let my hair grow long and blonde again, even got a perm but never parted with the DM’s.

In the workplace it wasn’t so easy; the men were definitely in charge.  I thought about shaving my hair again, but why should I have to?  Why shouldn’t a tall blonde be treated equally without having senior male colleagues slap her on the backside and tell her what they liked to do to her and oh can she pick up their dry cleaning for them.  Not all the time and not every man obviously but it was a general tone and I think it’s a tone that got worse not better.

So much can be bought on the internet these days and viewed and dabbled in and that includes women.  The visual and the virtual, no strings attached.  So I hear that young women now are getting together to fight it and using the internet to get their message heard.  Whatever you think about the whole Sinead and Miley tussle it was something that needed to be said, to be questioned.  In this age where differences in sexuality are being more widely accepted why is it that women are still struggling to feel equal and respected? 

And just to be clear, in middle age I still don’t like baking, sewing, knitting, cooking or ironing.  I do like cars and bikes and gardening and a new hobby; the piano.  If I ever start to enjoy any of the former it will be the start of senility of that I am sure.

Smells Like Teen Spirit.

The smell of frying onions, the boom of the music, the screams of delighted terror, flashing, spinning lights that colour everything orange, red and yellow. As soon as you walk in you can feel the thrill.

An amazing charity called The Lions books an entire fun fair for two hours every year so that children with disabilities can have free run.  No looks of ridicule, no tuts from the ignorant, two hours of freedom from judgement.  I hadn’t been for a few years as the last time we tried my young man found it a little too much, he was too full of anxiety and sensory overload and stayed glued to me.  This year I’d arranged to meet some other families so despite the rain we had to go. 

This time it was the thrill not the fear that he felt.  He sat in his bumper car and waited patiently for the others to fill up.  I heard my young man’s name being called and then in jumped a friend of his from Youth Club who had sight problems saying “you can be my driver, lets drive like GT8”.  And they did, singing football songs along the way.  Then my young man got off and asked “can I go with my friends?” before I could say yes he ran off after them towards the Waltzer.   I stood at the side of the rides with a grin on my face and jigged along to Sister Sledge.  He downright refused to go on the Twister with me and only spoke to me when he wanted money for some sweets.

This felt strange, this felt normal, this felt like relief.  I never dreamed I would see this day.  You can do great big things in this world, you can strive to change great big things.  This small charity does one amazing small thing that means the biggest thing in the world to me and my son.   Join in.  Do your little bit in this world where you are. Aint that right Mr Tutu :)