A New Dawn

So, it's been a difficult week in our house.

Yesterday we had the long, long awaited ADOS (Autism Assessment) for our Darling Daughter (aged 9).  And after a number of arduous, uncomfortable hours they confirmed what Mummy has known for so long - that she is also autistic.

This was both wonderful news and a bitter blow at the same time.

I had wanted to know.  I fought for the referral, God how I fought. The teachers, SENCOs, therapists, CAMHS consultants I have gone up against in the past are too numerous, hopeless and depressing to recount. Only for it to be SO GLARINGLY OBVIOUS when you actually get her in a room with the right 2 people.

But of course then the frustration sets in. The frustration at this deeply, horrifically flawed system that gives no continuity of care in this situation.  As everything, it's a postcode lottery.  Our county councils opinion is, if we can afford our mortgage (barely!), we can afford to fund our own care.  We can't 😢

So we got another leaflet, another list of charities to beg and bother 😥 Charities who are underfunded and over-subscribed, who will immediately try to recruit you to their fundraising team and offer to add you to their mailing list (for £135 ANNUAL membership fee!)

Of course there is the Cygnet course you can go on. And who can't free themselves up for 3 hours per week (more likely 4-5 by the time you add travel, parking etc) for SIX CONSECUTIVE WEEKS, during the day, term time (when your kids with additional needs are Home Schooled because THE SYSTEM HAS ALREADY FAILED THEM!!!)

So I argued, and I reasoned.  They placated with cries of what an amazing parent I am, how well informed, in tune, how facilitating, what amazing work I have done with my children, how there is no intervention above and beyond what I am giving them.

NOT GOOD ENOUGH.

What if I wasn't able to do this all myself?  What about a carers break, y'know, ever???? What about if I couldn't do it? Because the day will come that I can't.

Anyone with special needs children will know that Babysitting is a foreign word!! There is a startling lack of willing offers, particularly from those nearest and dearest to you from whom you'd hoped for more.

Over the years, party and social invites will dwindle as less and less people want your unpredictable kids around, and there's nothing you can do - there's no-one ever to leave them with. Not even paid agencies 😥

So you become increasingly isolated, increasingly burdened but nobody cares. Turns out "Every Child DOES NOT Matter" - only the high achievers that affect the League Tables or the average Joe's that maintain the status quo.

Ironically my DD WAS one of those High Achievers. A full 2 academic years ahead in EVERY subject when she was at school. But the damage to her Mental Health, Well Being and Self Esteem were insurmountable.  And so I refused to leave her in an environment, worked like a slave to bring up the class average, with no praise or recognition ( "because it would make the other children feel bad about their achievements!" ) and no help AT ALL for her social and emotional needs ....... because she was "intelligent enough to know how to behave"!!!!

Oh I am so angry, so angry with this system that is failing our children and young people. And will continue to fail them as adults :-(

This 'problem' will not go away.

My children are wonderful, good mannered,hard-working, self motivated individuals.  They need an ENORMOUS amount of help EVERY SINGLE DAY because there are some things they just CAN'T do.........walk safely beside a road, remember to eat, drink, wash,go to the toilet, get appropriately dressed.  They are now 8 and 9 1/2 and in these areas, nothing has changed since they were toddlers - they will ALWAYS need this level of prompting.  What happens when I'm not there to give it?  I tested the theory once - my daughter got to day 3 of not drinking anything at all, I intervened before hospitalization was needed.

But apparently this is ok. Because apparently I will live forever.  Apparently I will ALWAYS be available.  Apparently I have consented to dedicate my whole, entire life - hopes, dreams, career plans - to their round-the-clock care, all by myself, forever.   And apparently, with zero help, guidance or support, I will ALWAYS know exactly what that care entails and what is needed in any given situation, ever.

So this is what I will do.

I will cry, in secret. I will rage in online chats with my fellow Army of Special Needs Mum's.  I will facilitate and enable and teach and keep house and resign all sense of self I ever had.

Because that's ok, right?  Because they're not sick. Because I can do it, regardless of the consequences and long term damage it may be doing to my health and mental well being.

Because that sounds fair, doesn't it?

Merry Christmas everyone!

Books, glorious books

I can't believe the first 7 days of December are gone already!

No Elf of the Shelf here, tree not going up until this coming weekend, but we are none-the-less in the Christmas spirit.  We've written all our Christmas cards and posted them, I still believe (strongly!) in doing this.  We've bought and wrapped all our Christmas presents - the kids have bought their own presents for family out of their own pocket money (I believe strongly in that too!  Christmas shouldn't be a one-way path in to the children, I feel it's important to teach them to sacrifice and give too).  They are really proud of themselves and happy with the choices they've made and the thought they've put in to choosing their presents.  They've wrapped and labelled them themselves, and it means so much because they are giving something of themselves 💖

We've got our advent calendars on the go 🎄😊  Mine is a wooden advent tree, with 24 tiny wooden decorations to hang on it - bought on holiday with DH in Vienna nearly 15 years ago now, and still going strong.   DS and DD bought their own advent calendars this year, I said no chocolate ones. So DS sold some of his old toys and bought himself a Lego City advent calendar, and DD followed suit and bought a cosmetics one. They are both thrilled with their choices 😊

I bought us a Book Advent from my fabulous Usbourne lady - who let me hand pick our books from a fab new range.  So far we've had these beauties -

I really cannot recommend them highly enough.  I'm a HUGE book fan, so it's such a treat to be reading these classics to my little book worms.  We settle down for Listening Time each morning, mostly with DS curled right in beside me so he can look at all the pictures, and DD drawing at my feet.  The Enchanted Castle (originally a novel by E Nesbitt) and The Canterville Ghost (originally Oscar Wilde) were both new to me and both really superb.  The kids favourites so far are Frankenstein and White Fang.  It sets our learning for the day as well, we've journied through the times of pirate, the Victorian workhouses to the Gold Rush and more besides!  Can't wait to see what we get tomorrow!

On the subject of Books, glorious books - some of you may remember the kids and I were lucky enough to preview a friend's debut children's book earlier in the year.  Well, on Monday it came in to print!  Of course we were straight on to Amazon to order our copy and read again about Maud and Dragon's adventures in glorious technicolour!  What struck me, receiving the hard copy in the post today, was just how beautiful Hannah Shewan-Friend's illustrations truly are.  To see them all together in the finished book was really quite a humbling experience.  We are so very proud of our talented friend 😊  If you have any children left to buy for this Christmas, I really don't think you could go far wrong with Inky Babble - https://www.amazon.co.uk/Inky-Babble-Hannah-Shewan-Friend/

Other things we've been doing this week include a trip to one of our favourite libraries (uh-huh MORE books!!) for DD to meet up with her best friend and work on their Lapland geography project together.  They research about the Northern lights, the regions covered by Lapland and the summer's of 24 hour daylight.  They decided they would work on making a 3D scene to accompany their presentation.  For a first time of working together, self-led, they did really, really well.    And DS was excited to find a Terry Pratchett children's book - so we booked that straight out! And, of course, he looked up what he could about his beloved carnivorous plants!

We've also been playing lots of fun games this week :-)  Such as Lego Minataurus -

Given we are BIG fans of Lego and BIG fans of the legend of the Minotaur, this game is the best of both worlds! You can get it on Amazon - https://www.amazon.co.uk/LEGO-190721-Games-3841-Minotaurus/ but my personal advice is have a look on Ebay first.  We recently bought this one second hand on Ebay (complete) for a fraction of the price.

We also picked up this little gem in a charity shop earlier this week -

Still available on Amazon - https://www.amazon.co.uk/The-Green-Board-Game-Co/ - and currently under three quid!! 

A great little game, simple to play, good for reading skills and also subliminal learning as the animals are grouped together in their families - mammals, crustaceans, reptiles and so forth.  Make a great stocking filler 😉

DD's been reading, reading, reading - a couple of new novels, re-reading some Harry Potters and we finally got our hands on a couple of the Goosebumps books for her to try.  So that's kept her going for a couple of days, along with re-reading the Malory Towers series.

And DS has been playing creatively and inventing -

Other excitement includes our new bean bags having arrived today!  Giant, waterproof bean bag floor cushions that can be sat on in a variety of ways.  Sensory heaven for my two 💙  So they've ridden horses, relaxed on life rafts and belly surfed on lilo's!  And, even better, they were delivered in boxes big enough to sit in!  So the rest of the afternoon was spent making and watching Christmas movies in their own houses! 

With books to read!

Happy, happy days :-)

Out of Africa

So, it's been a busy week for us this week.

It was our Geography Club on Wednesday, so DS & DD were busy with their projects.  At the request of several children (in our suggestions box) we were doing the entire continent of Africa this month!   DD decided to do a project on lions in The Savannah - and did some research in to their declining numbers and why their population has been severely depleted in the last 50 years.  Then she made a 3D scene of a lioness hunting -

DS decided he wanted to find out more about the island of Madagascar.  His research led him to the island of Nosy Manitra (The Scented Island) and he settled on doing a project on one of it's volcanoes Nosy Be (pronounced Nossi Bei) -

This month he actually stood up and read out his facts, which was lovely to see as it shows he has grown in confidence with his reading ❤❤❤

We also made food for our Food Tasting table.  There was such a huge wealth of choice this month - given we were covering a whole continent!  We settled on 3 dishes - Mozambique Lemon Chilli Rice (delicious!), Ethiopian Cabbage Dish (gorgeous) and Cornmeal Christmas Wreaths (fiddly but worth it 😏 )  -

Mozambique Lemon Chilli Rice. Find recipe here -  http://www.foodnetwork.co.uk/recipes/mozambique-lemon-chilli-rice.html

Ethiopian Cabbage Dish.  Find recipe here - http://allrecipes.com/recipe/152937/ethiopian-cabbage-dish/

Christmas Wreaths. Find recipe here - http://www.foodnetwork.co.uk/recipes/cornmeal-wreaths.html

We had a lovely group session with such a range of learning - it's so great to have so many Home Educated kids come together and share what has inspired them that month.  I love the variety and the encouragement the kids give one another.

Besides Food Tasting, we had colouring, crafts -

Find instructions here - http://krokotak.com/2015/11/paper-giraffes-so-easy-to-make/

And we had a group activity for the first time, rather than worksheets, for the kids to make an A-Z of Africa.  This proved really popular and most of the children (and parents) dipped in and out of the activity, adding their input.  It was a really great way to draw together and reinforce all the learning -

DS can struggle a lot with Geography Club, due to the noise in the hall and numbers of people, but his projects have been going from strength to strength and he is gaining confidence month on month, so I have persevered.  We have a really lovely group of regulars now who are such a pleasure to meet and learn with.  He really considers them all his friends and said this week was his Best Geography Club ever!  It was the first time he actually sat and did the craft (through to completion).  He also joined in with the A-Z activity, looked through the projects on the Sharing Table and loved seeing some real African carvings one family had brought in.

There's lots more news from our week, but given DD has her bestie over tonight for a wake-over (officially known as a sleep-over but not sure any actual sleeping will get done 😄😄 ) so I'll sign off for now xxx