Its been a while!

Hi! We’re back! (yep you guessed it, that’s me and the voices in my head!!) Come say Hi and lets have a catch up!

So, its been a long long while since I posted, Why I hear you ask!! Well, er, I’ve been a bit busy and also, I can be a right lazy cow at times! But mostly its because my baby boy is no longer a baby, he is in fact a strapping 14 year old (the attitude comes free, lucky us!) 

He has grown into a giant of a child, as expected given his Dad is 6’4, although you would have thought my 5’2 would have balanced it out a bit no? He is now a confident, funny, sarcastic (yes thats all me) teenager, complete with all the usual teenage angst that comes with the rioting hormones screaming round the bodies of all teenagers! He looks no different from any other teenager, until you look closer, or deeper, or you have a child at home that is on the Autism Spectrum, cos then you basically get X-ray specs built in for all things ASD!

So why did I stop posting? Well I was worried that as my baby is now effectively a young adult, I didn’t want to put him in a difficult position, embarrass him, make him feel spotlighted, you know, all the stuff that a good parent should think about and consider. Of course little did I know that my thoughts and feelings, as a member of the “Old Club” (wtaf!! I’m still in my 40’s!!) would in fact hold no meaning whatsoever for ANY teenager, let alone my own, so with that in mind, I’m back!!

Today is a good day, to be fair it started pretty shit but its definitely improved, in part due to the fact I bought 98 more pairs of “lounge pants” which I am pretty sure used to be called “joggers” Pre-Pandemic. So as I sit here in my comfy peach coloured loungewear, feeling pretty mellow (that’ll be the valium) and think about how things are, what can I tell you, what’s changed?

Hmm, Everything in a nut shell, far too much to catch you up on to be frank, but if I had to nail it down to a few points (which is a massive challenge for me as we all know I like to ramble!) I would say it was, the fact he has matured, the fact we have consistently pushed his boundaries to ensure that he understood the World is big, and it is frightening, but it is also wonderful and amazing, something we have always tried to make him understand. Plus some great medical back up, some also bloody useless medical back up, and some good schooling and some bad schooling, its a hotch potch of things but I think most of the changes, for good and bad, are due to the fact that he, Connor is growing up. 

Obviously its not as simple as, “oh well he grew up and matured and the autism just went away!” How fab that would be?  A lot of work has gone into supporting and reassuring him into becoming the young adult he is today. I will tell you more specifics next time as otherwise we will be here till June (although by the looks of things, we all have the time…..) and its been hard, seriously hard work. My Life has become utterly absorbed by the Autism and its needs. I am also his Advocate, so its important I know my stuff, which also takes a lot of time and research. Ask me anything!! Interocpetion? I’m on it, propreoceptive feedback? Yep done! The Wilbarger Protocol? Got the tshirt and the brush!! 

So as you can see, its a Team effort. Some parts of the Autism have indeed gone away, but I think maybe they were the parts that all kids have, and were just highlighted in Con as his sensory needs exacerbated things like confidence, and interaction with other kids etc.

Most of this is now manageable, Con has learnt how to manage lots of situations and as such his Life has opened up enormously. He is also very adept at realising when something is too much, and pre-empting situations that may become problematic, he has learnt this through trial and error and much reviewing and analysing with me at home. So I guess actually, nothing went away as such, Con just learnt to deal, and therefore things are less obvious. 

Other things have become “worse” or “stronger” The OCD has become a much bigger problem as he matures, to the point that we have had to take action to deal with this (more on that in a future post) which posed a huge number of dilemmas as we always swore that medication was not the answer (might have been a tad naive when we said that!) There most definitely is a time and place for medication, don’t knock it till you’ve  tried it!!

The ADHD has kicked in over the last few years, most notably in terms of education, Con has the attention span of a very simple goldfish, and the concentration level of a Gerbil on Crack, so you can imagine the combo that throws up…. 

Now there is definitely a touch of ADHD in the family, ahem! But again wouldn’t you think that would have been counter balanced by the Hubby’s almost comatose style laid back attitude to life?! Apparently not, it would appear that we blessed our Child with the worse of both of us, fortunately he also got the Best of both of us!!

So all in all its been a rocky road we have travelled, and there are still days when I worry, head in hands, sat on the floor, thinking “oh God, how is this going to ever work out, how is he ever going to be ok” Those days still exist and are still more frequent that I would like. But, there are also days when I see the amazing and kind and funny young adult he now is, I mean I see that most days, it’s just shrouded in teenage “oh god what now!!” 

We have had EHCP challenges, tribunal, judicial review, endless rows and battles with School, seen so many Consultants that I have lost count, been down medication routes, tried alternative therapies, different diets to see if food plays a part, basically short of howling at the moon (and yeah ok I did that once, but in my defence I was really really drunk!!) we have done it all! Some worked, some didnt, again I will tell you what worked in a future post, each one deserves its own little story.

So, he’s 14 now, when he was 7 I panicked about getting to 8, when he was 8 I panicked about getting to 9, now he’s 14 and I panic about him finding his footing in a World that is extremely challenging, but I have faith, faith that he will find his way, same as he has the last 14 years. Will it be easy? No, absolutly not, but then maybe Life isn’t supposed to be easy? It’s supposed to be challenging, exciting, devastating, and all the other myriad of emotions that make up spending X amount of years on the planet. I can’t protect him from them all, and although I will never EVER, stop being the over zealous protective Mum I am, I have learnt to stand back a bit, and watch him walk through Life, floundering at times, but mostly making it work, in his own unique and special way. Con is the most magical thing that ever happened to me, and it will never be topped. That doesn’t stop me wanting to stab him in the head with a fork regularly but hey!

So that is where we are, still all over the place, still frantic at times, still wanting everything done yesterday not today, but I can’t change that, and I’m not sure I would, as its that driven and “teensy bit” aggressive attitude that has got us help in the hard times. But we are also in the teenage years, in itself a tough time for all parties! and I watch my gorgeous boy navigate through his Life, and I am endlessly proud, he will always be my baby, but he is also now a young man, just starting out. I know he will do great things.

Change your School, Change your Child – why a change in School can reap huge rewards for ASD kids.

“Definitely” a T-Rex Egg, no question…

 

The title above isn’t all encompassing; these things have to be viewed on a case by case, or more appropriately, child by child basis. But I have to tell you how changing our Sons School, does appear to have absolutely changed not just his, but “our” lives. Granted its early days, but we are almost at the end of the first half of this term, and I’m “just” about” prepared to take a sigh of relief, swiftly followed by a Valium….

We moved our little box of complications from his existing school where he had spent 3 fairly unproductive and not altogether happy years, to a much smaller school, with only 36 children.  The School had been widely recommended and we had friends whose children go, and who couldn’t praise it highly enough. Naturally I still Googled it to death, the Hubby and I did several visits before taking our Son, and even then I still walked around the garden at midnight pacing whist mumbling: “Oh Crap what if it’s worse than where he his (not possible!)”

But the results to date are, well nothing short of extraordinary.

He is more loving, tactile, happy, has more energy as he is not expending all he has in his little body to get through the trauma that was his school day. He has taken leaps and bounds in a very small amount of time. He sings to himself, he laughs more, he speaks to us more, and for the first time since he was a baby we have managed to eat out! Not at some Celebrity Chef Joint granted, I don’t think they do “everything with ketchup”, but at a small local garden centre. This is a first, and unless you have a child with ASD it will be hard to understand how such a small, apparently unimportant event can bring a lump to your throat.

For “Our” child the case for changing schools was solid. I have the living, breathing, albeit highly manic proof of it. In fact it comes bouncing through the door each day and then continues to bounce off the walls until bedtime, frankly its killing us!

 

Of course on the tails of this deep undivided joy are the self-recriminations of “Oh God why didn’t we do this sooner?!” – cue more parental guilt. But honestly we all do the best we can, and sometimes it works and sometimes it doesn’t. I have decided it’s best to try and always look forward, rather than look back at the bad times. It’s also tempting to become bitter at the previous school and those involved, or rather NOT involved in getting our Son help. I have considered getting the voodoo dolls out and finding some particularly sharp pins, and boiling wax, and,….oh well its best I stop really, nobody really wants to know how many Hex spells I know. (Just for reference it’s “A Lot!”) But the point is, regret, revenge, and guilt will only get you so far, mostly it gets to me to the Ben & Jerrys, and my hips are still refusing to speak to me after the last 7 pots I ate.

Every step is a step forward, every success is another high, and every time he does well it’s a smug “Up Yours!” to those who just rolled their eyes. Its beating the same old drum, but it’s the drum all parents beat, you just want your child to be happy, and ours, well, he is!!

The system for ASD children, although always evolving and getting better in many ways, does not currently support these kids to the required level.  Either from the Medical side or the Educational side. This isn’t just me bitching on my soap box, although granted we all know that’s a spot I enjoy. I hear from many MANY other parents of kids with SEN that unless you can navigate the system, read the jargon for what it is, and are prepared to have many doors shut in your face, well frankly your child isn’t going to receive the care and attention they need, and more importantly are entitled to.

We have been fortunate to have Private Health Care, but they stopped paying our frankly scary bills over 2 years ago now, to give you a rough idea the last bill we had from our Pediatrician was at £380 per hour, nuff said!  The Educational Psychologist who works with our Son, and is genuinely lovely asked his  previous school to refer him to the NHS for a Pediatrician, and a speech and language therapist, (SALT)  about 8 weeks later we received  a letter saying, “there was seen to be no requirement at this time”. Hmmm, well that’s interesting given that he is formally diagnosed with ASD, and this diagnosis was made by a full time NHS Pediatric Consultant? Ahhhh but we paid him privately. Well send us to Jail without Dinner!  Granted I’m speculating, but tell me what other reasons could be offered? The fact we pay for a private Team to care for our son does not mean we are not entitled to NHS help? Does it?

One phone call (ok maybe it was 10) and I spoke with the Clinical Lead for SALT in our County, we now have a Senior SALT coming to do a school visit to observe the little dude, we also have what is called a “Care Navigator” (if you don’t have on of these, get one, they are invaluable)  who will help us through the minefield that is the health care system in this country, particularly if your issue is ASD. The Care Navigator also sorted a referral to the Children and Adolescent Mental Health Services (CAMHS). All those I have spoken to have been incredibly compassionate and helpful, and keen to observe our Son to see if they can help. Given the strong existing relationships we have with our private SALT and Occupational Therapist (OT) we are likely to keep them on board as well, but to take the next step with our child, which is potentially the Statement process then we need the NHS Folks.

But the “System” should not be as complex as it is; parents are already scared stiff when they hear they have a child with SEN, a simpler route to access the right people must be possible surely? Unless you are an “extremely” proactive parent, who is prepared to fight, and fight hard, then you are going to struggle. I naturally lean (run screaming and brandishing a large fork) towards pushing for what I want, but not everyone does, and it shouldn’t be part of the process.

But back to the new School (she says with such glee!). A new school is a challenge for any child, its scary doing new stuff when your 7. ASD just adds a few extra dimensions, but it has been so SO worth it. The change in our son is fundamental, it’s only now that I see how truly unhappy he has been and that pains me as it would any mum, but as I’ve said, it’s about looking forward not back. (For reference I don’t practice what I preach, I’ve had my head in that Ben & Jerrys for WEEKS!).

We see him laugh with his friends, we see him rush in the door with a new book to read because he finished the last one, we see him come home and say his teacher has said how proud she is of him. We see his Teacher look at him with insight, compassion, and a true desire to see him succeed, rather than looking at him as a “problem” child.

I see my Son write with pleasure rather than tears in his eyes, I see him learn spellings whilst laughing, rather than sat with his head in his hands, sobbing.  I see him excited to go to Film club, and most importantly of all, I see him sleep, peacefully.

He understands now what school “Can” be like, and he loves it. The days of picking him up from school, coming home for him to bury himself in his ipad and effectively not speak to anyone, those days are gone, (fingers and toes all crossed) because he’s not terrified anymore. The World has become a better place simply through moving him to a different environment, one that he can cope with and his brain can make sense of.

There are no words for me to explain the difference this school has made, and I know it will always be a roller-coaster, there will always be good days and bad days, but he is supported, cared for, and treated with respect.  His Teacher is one of the most insightful individuals I have ever had the privilege to meet, and I would think all the children that are in her classes are better for having met her

He is also “incredibly bright” and you know this is when my desire for retribution and revenge ( I know I know, but I’m only human!) will be fulfilled, because he’s going to be amazing:)  He’s going to be so so SO good at what he does, granted it will be a specific field, he won’t be an all-rounder, but that child that was written off for all intents and purposes, he’s going to make his mark in the world, and when he does? Well, lets just say that that is Karma enough for all the doubters and naysayers who put him through unnecessary strain, and who turned their backs on us as a family. That’s all the “revenge” I need. Success and Happiness are the biggest “Up Yours” I can think of, well OK there are a few others I can think of but I’m trying to cut  back on that type of thing…

Change your school change your child –  research it, check it out, be careful, talk talk talk! to the teachers, look at the school when its open and closed, talk to other parents, break in at night ….oh, right well, perhaps not that but you see my point.

Do it!, if it’s the right decision for your child the difference is inexplicable.

Then don’t beat yourself up for not doing it sooner, I NEVER did that. noooo no no, not me, I’m totally cool with it all….

On an entirely separate note; funny thing happened to me this week…..I had to drop a parcel into the corner shop, one of those “Click & Collect” jobs. Which you would think would be easy right? Well, last week I took a parcel in and thought the man behind the counter had either a serious coke habit or was hitting on me, turned out I just had red lipstick all over my teeth and he was frantically trying to let me know. “This” week I had to go back with another parcel, was feeling a bit self-conscious so decided to be very blasé about the whole thing, he’s a professional, we all get lippy on our teeth sometimes it’s no big deal, just act natural!  So I strolled in, went up the counter, smiled and came out with the memorable line: “No lipstick on my teeth this week!, but I forgot to put my knickers on”……….at this point the voice in my head is desperately trying to claw its way to safety but after an Epic Fail of these proportions there really is nowhere to hide. We’re going to have to sell the house and move; ….. to New Zealand.

 

and DONE!

 

 

 

 

Education, it should be a RIGHT, not a FIGHT! for All Children – caution, this blog contains ranting

Education, it should be a basic right for all children. Most of us look back on our School years with a mixture of joy, laughter and touches of embarrassment at how “grown up” we thought we were.  Not all our School years are easy, many are filled with fear and trepidation, School is a big step and its a period of change on numerous levels. Most of us have struggled at some point, be it academically or socially, but School is a great leveler, and teaches us how to start making our way in the World. It helps define who we are, find our feet, and set our foundation of beliefs that we build upon as adults.

Schools are wonderful, exciting institutions that are filled with people dedicated to helping young children and people grow their ideas and their minds, to support, education, comfort when knees are scraped in the playground, applaud when those tough spellings are finally cracked, mop up when that giant pot of red paint is splattered over 28 pupils, the list is endless, but Teachers and Teaching Assistants are surrogate parents when our children are handed over to them at the start of the school day.

So why is it then that for some the fight is endless to ensure that our children will be given the same opportunities as those that are classed as “mainstream”.  I have friends who are Teachers and Teaching Assistants, and they know I applaud them. But SEN children are not mainstream, they do require more help and work, and the system currently in place to ensure they receive this support is, in our experience, frankly lacking. It is the System, not the Individuals in the majority of cases who fail these children, although there are notable exceptions to this rule, which I shall not go into as I have always been determined this blog would not become a personal vendetta, tempting though that is at times. …

Ambitious About Autism: http://www.ambitiousaboutautism.org.uk. Has just published its Campaign Report for 2014, in which it states that 4 out of 10 children have been excluded  informally, and therefore illegally during their time at school. This is a horrifying statistic. What are we doing??!! Not all children with Autism grow up to be brilliant, some grow up to be just like you and me, regular people who live happy lives, but some grow up and do amazing things. Below is a list taken from Wikipedia, it took me 10 seconds to Google it, all on this list have some form of Autism Spectrum Disorder, take a peek, it makes for an interesting read. I have not edited this list either, there are some scary folks on this list as well as some wonderful ones. But that’s sort of the point I’m trying to make, the World is full of good people and bad people, some have Autism, some don’t. We are ALL capable of kind deeds and dark deeds, we are ALL the same in this respect.

• Danny Beath, award-winning British landscape and wildlife photographer^[3]
• Henry Bond, writer and photographer^[4]
• Susan Boyle, British singer and Britain’s Got Talent finalist.^[5]
• Phillipa “Pip” Brown (aka Ladyhawke), indie rock musician^[6]
• Michael Burry, US investment fund manager^[7]
• Lizzy Clark, actress and campaigner^[8]
• Ryan Cleary, LulzSec hacker^[9]
• William Cottrell, student sentenced for fire-bombing SUV dealerships^[10]
• Paddy Considine, actor^[11]
• Johnny Dean, singer/songwriter of Britpop band Menswear^[12]
• James Durbin, finalist on the tenth season of American Idol^[11]
• Robert Durst, American real estate developer accused of murder^[13]
• Tim Ellis, Australian magician and author^[14]
• Brian A. Gutierrez, State of California Councilmember^[15]
• Daryl Hannah, actress^[16]
• Dan Harmon, screenwriter and creator of Community.^[17]
• Peter Howson, Scottish painter^[18]
• Luke Jackson, author^[19]
• Heather Kuzmich, fashion model and reality show contestant on America’s Next Top Model^[20]
• Adrian Lamo, American computer hacker^[21]
• Adam Lanza, Sandy Hook Elementary Massacre shooter ^[22]
• Abz Love, British rapper & frontman of Five
• Clay Marzo, American professional surfer^[23]
• Gary McKinnon, computer hacker who broke into high-security military and government sites^[24]
• Travis Meeks, lead singer, guitarist and song writer for acoustic rock band Days of the New^[25]
• Les Murray, Australian poet^[26]
• Robert Napper, British murderer^[27]
• Ari Ne’eman, American autism rights activist^[28]
• Jerry Newport, American author and mathematical savant, basis of the film Mozart and the Whale^[29]
• Craig Nicholls, frontman of the Australian alternative rock band, The Vines^[30]
• Tim Page, Pulitzer Prize-winning critic and author^[31]
• Dawn Prince-Hughes, Ph.D., primate anthropologist, ethologist, and author^[32]
• Nicky Reilly, failed suicide bomber from Britain^[33]
• John Elder Robison, author of Look Me in the Eye^[34]
• Vernon L. Smith, Nobel Laureate in economics^[35]
• Raymond Thompson, New Zealand scriptwriter and TV producer^[36]
• Liane Holliday Willey, author^[37]
• Adam Young, multi-instrumentalist, producer and the founder of the electronic project Owl City^[38]
• Satoshi Tajiri, creator of Pokémon^[39]
• Aleksander Vinter, Norwegian musician who produces under the alias Savant.^[40]
• Alan Wilson (musician), Musician, Primary Composer, Singer, Guitarist, and Leader of the Blues-Rock band Canned Heat ^[41]

• Michelle Dawson, autism researcher and autism rights activist^[42]
• Temple Grandin, food animal handling systems designer and author^[43]
• Courtney Love, frontwoman of Hole^[44]
• Caiseal Mór author, musician, and artist^[45]
• Hikari Ōe, Japanese composer^[46]
• Dylan Scott Pierce, wildlife illustrator^[47]
• Jim Sinclair, autism rights activist^[48]
• Donna Williams, Australian author.^[49]
• Jacob Barnett, Math and science prodigy ^[50]
• Amanda Baggs, advocate of rights for autistic people^[51]
• Marty Balin, singer and songwriter with Jefferson Airplane and Jefferson Starship^[52]
• Lucy Blackman, university educated author^[53]
• Luca Brecel, Belgian professional snooker player.^[54]
• Alonzo Clemons, American clay sculptor^[55]
• Tony DeBlois, blind American musician^[56]
• Jessica-Jane Applegate, Paralympic swimmer^[57]
• Todd Hodgetts, Paralympic shot putter^[58]
• Evgeny Kissin, Russian pianist
• James Hobley, British dancer and 2011 Britain’s Got Talent finalist^[59]
• Jonathan Jayne, contestant on American Idol^[60]
• Christopher Knowles, American poet^[61]
• Bhumi Jensen, grandson of Bhumibol Adulyadej, King of Thailand^[62]
• Leslie Lemke, blind American musician^[63]
• Jonathan Lerman, American artist^[64]
• Jason McElwain, high school basketball player^[65]
• Thristan Mendoza, Filipino marimba prodigy^[66]
• Tito Mukhopadhyay, author, poet, and philosopher^[67]
• Derek Paravicini, blind British musician^[68]
• James Henry Pullen, gifted British carpenter^[69]
• Matt Savage, U.S. jazz prodigy^[70]
• Birger Sellin, German author^[71]
• Henriett Seth F., Hungarian autistic savant, poet, writer and artist^[72]
• Daniel Tammet, British autistic savant^[73]
• 50 Tyson, rapper and autism activist^[74]
• Richard Wawro, Scottish artist^[63]
• Stephen Wiltshire, British architectural artist^[75]
• Christian Farrington, British school boy with IQ of 168^[76]

Our Son is formally diagnosed with Autism and Apraxia. It has taken us 3 long years to get to this point. Because of this I have  spent the last 45 minutes trying to fill in forms that fill me with grief and no small amount of anger, our child has Autism, this means he needs different help. It doesn’t mean he is more important than any other child, or we think he should have a dedicated team of experts following him around every day to ensure his every need  is met, it just means we want him to get a “Little” bit more help.  A “Little” bit more understanding. A “Little” bit more compassion. I challenge ANY parent to not want the same thing?!

Autism in not a dirty word, children with Autism are not less deserving that those who are mainstream. ALL children deserve every opportunity to live, learn, and make giant leaps in the World. It “should not”, be an obstacle course of paperwork and bureaucracy to stagger and stumble through in order to get your child’s voice heard.

I am without doubt cross/angry/pissed off /sad today. Today is not a good day, fortunately I believe in my Son and the amazing person I know he will become, his Father who is also blindingly brilliant and yet not mainstream, and  in Karma. And Karma’s a Bitch, and she knows where everyone lives..

Autism a Big Ass Spider & Mumsnet – nobody panic!

You have to love Mumsnet, well obviously you don’t “have” to, its not like there is a “Mumsnet prison” if your not a fan. But they do come up with some storming ideas, the OFR and the Penis Dunking Cup have to be two seminal moments in Mumsnet history. And nicely cement the English reputation throughout Europe and the rest of the World as being a nation of true eccentrics.

http://www.mumsnet.com/Talk/_chat/a1916163-Does-anyone-actually-have-an-oh-fuck-rucksack?utm_source=Facebook&utm_medium=post&utm_campaign=daily%2Boh%2Bfuck%2Brucksack%2

Bizarrely enough we do have one of these, Oh, perhaps I should explain for those of you haven’t read the article (for shame!), an “OFR” stands for an: “Oh Fuck Rucksack”. It’s what you grab when the house is on fire, or there’s an Earthquake, Flood, other event of Biblical  proportions (obviously this is somewhat location specific, not many Earthquakes in England last time I checked).

Our OFR contains something highly sugared, for when the little Dude suddenly gets hungry, it also works well for shock. I found this out when we were on one of our monthly trips to A&E back when he was little, the Nurse there said to me that its always best to give young children a high sugar content drink if they are very upset or in shock (also works for the Hubby when he see’s my annual Shoe bill….). I know it goes against popular thinking but sometimes sugar is good. Like Easter, and Christmas, and Friday nights….

But on a semi-serious note we do have an OFR. I started it when our son  first started to show signs of being somewhat left of center. It used to be a choccy biscuit and a drink, with some sunglasses, less for the Sun and more for the anxiety he feels, it allows him to “hide” when there are too may people around. Its since grown somewhat and now consists of a change of T-shirt, due to the fact he can find his clothes painful if he becomes over anxious. A soft cuddly toy (your never too old for a Teddy Bear), some Anti-histamine syrup as if he gets very agitated he can get hives, and some Valium – worry not, they’re for me!

Which leads nicely into why I am so anxious this week! We  had the “Big Meeting”, and it went fantastically well. In as much as we got the paperwork we needed to head into Statement territory, yet I feel bereft, jobless as it were.

We finally got past the red tape (or at least the first lot!) and the NICE guidelines,  and have everything we need on paper, in triplicate no less, to start the long road to getting our little Dude a Statement of Special Educational Needs, hereafter to be known as a “Statement”, because honestly why use 5 words when you can use 1! – I realise the irony of that statement given that I am blogging….

To be honest I didn’t even realise the sheer magnitude of red tape that existed before we got started on all this. I mean I knew it wasn’t going to be easy, we had been warned many many times that getting anyone to pay attention to us would be an uphill struggle, but never in my wildest dreams, ( and I was a party girl back in the day, my dreams get “pretty wild” I can tell ya!!) never, did I imagine the challenge we would have ahead of us. I know everyone’s story is different but the common denominator seems to be that getting your child diagnosed and then Statemented, is sheer back-breaking hard work. I have yet to meet any parent with a child with any kind of special  need that doesn’t smile gently, and nod their head wearily when you mention: “It so hard!”

But the first hurdle has been cleared, and whilst it’s just the first leg of what is effectively a Marathon, we did it, we got there, we can put a tick in the first few boxes.

The hardest bit of this last week has been the strain of knowing that the last three years has all led to this final week, its a bit like the lead up to Christmas. All that planning, preparation, eating of mince-pies….OK that last bit might not be  “strictly”  relevant. But you get the idea, when you have planned, and pushed, and cried and torn your hair our for something, and then you get it. Then what? ……Nothing, just a sense of; “Oh” and a feeling of being out of a job, because for the last three years it’s all we have known, all we have worked towards. Now we have it. What the hell now?!?! I feel unemployed!

I think I  should interject at this point that whilst typing (and consuming large quantities of chocolate) I am also watching a piece of classic cinema: “Big Ass Spider”.  Now I’ll be honest with you here, its not high brow stuff, so far it contains several Z list actors, some highly suspect wobbly scenery, and two Military types that lack a certain amount of authenticity. This is in no small part due to the fact that the female “military operative” looks more likely to offer you a lap dance than suggest a strategic tactical assault. I am also prepared to bet that  the “required uniform” for female military personnel does not include hooker heels and a push up bra, although maybe if it did Wars would not last so long?  The “Big Ass Spider” on the other hand is down right terrifying! Clearly the entire budget for the movie went on this little beaut, I may never sleep again.

Aaannnywhooo! Back to my point. One of the questions we were asked as part of this last weeks meeting was: “Are you OK with the diagnosis (of Autism)  – it felt like an odd question, but I do understand it. Not everyone wants the piece of paper, it is after all a heck of a label to land your child with. But its not always a bad thing. Sometimes, things need to be labelled. We do not want our child to have Autism, but he does, and avoiding the fact or at least “side stepping” it by not having it put on paper, is for us, not a solution.

I respect those who prefer not to put the label on their child, each and ever parent has to choose, and its a horribly hard road to travel. But there are positives to a label for us. We can finally get the attention our child needs, we can access the help he requires. We can justify that outrageous quantity of Sauvignon that goes on the Tesco shop each week…

…Big Ass Spider (BAS)is now 2 foot across, this thing is nasty with a capital N!! – seriously, you need to watch this, bad movies don’t get any better.  I also watched “Sharknado”  this week, I feel a sense of shame but honestly I have a lot on my plate, I need the escape!

So where do we go from here, well we decided to take a few days off before hitting the Statement paperwork. So far I have sucked at this as I have already read it back to front and front to back, but I’m trying. (Oh good grief now we have bikini volleyball in the movie, this is purely for titillation purposes (pun “entirely”intended..) still on the plus side it looks like BAS is about to chow down on them – its a cruel kind of justice).

It was suggested to me today by two close friends that “maybe” I still haven’t accepted that the little Fella has Autism, and I think they are right. You always hope that it might be a phase, or something else (although heavens only knows what, as surely anything “else” wouldn’t be any better anyway. The phrase clutching at straws springs to mind) so I suppose that might be part of the reason I feel so numb, course it could also be the Wine… I think a meltdown at some point is probably on the cards, best make sure the freezer is stocked with Ben & Jerrys.

Quick update on BAS situation, the bigger it gets the less believable it becomes, shame really as I was starting to root for it after it ate the bikini volleyball contingent.

So, where are we? Well, brain is firmly not in gear. For the first time in 3 years I feel lost. Unsure what to do now, I’ll get it together of course as that’s what mums do, regardless of whether their child has special needs or not. Mum’s (and Dad’s) are after all Superheros in disguise. But for now? ……I’m gonna need a bigger bar of chocolate..

The Financial Cost of a Special Needs Child – big bucks, but big rewards

Below is a quick run down of the financial cost of Our special needs child. I say “Our” as I can only comment on what our little fella costs (who I hasten to add is worth every penny, but it’s a practical implication that you have to factor into your life), and to be honest somebody was a little facetious with me about this very issue recently, so I thought I would just give you an over-view. Because smacking them upside the head is frowned upon apparently…

The Pediatrician costs £360 an hour, and everything is pro-rata at £90 for every 15 minutes, this includes “reading” time and phone calls.

The Occupational Therapist (OT) is £70 an hour plus travelling expenses

The Speech and Language Therapist is £70 an hour plus travelling expenses

The  private education sessions we go to once a week in order to encourage his self esteem as much as his educational ability, are £1560 a year, and this will only increase as SATS and exams loom.

So as a minimum you are looking at around £890 per month, that’s one visit to the Pediatrician, one OT session, one Speech and Language session, and one hour per week educational tuition. Some months require more, some less, this is just an average.

And before the Naysayers shout “Use the NHS then luv!”, have you seen the waiting lists for NHS referrals to Consultant Pediatricians?  Particularly with a child that although clearly on the ASD,  is not disruptive in class and does not display any aggressive behavior.  How much “easier ” life would be if our Son kicked off every now and then, or threw the cat out the bedroom window.  Tragically, and it is tragic. Children with ASD that do not demonstrate behavioral problems that are violent or have the potential to cause harm to themselves or others, often fall through the loopholes in the system.

This is not to say I wish our child was violent, not at all. Parents with children on the ASD that have the added issues of aggression and physically intimidating behavior have more, not less problems to deal with. But these children are more easily identified as their problems are more encompassing of those around them, and therefore more noticeable. And therefore, have to be dealt with quicker by the medical and educational establishments.

We also, as I think I said in a previous blog live in a County that does not  offer OT to children on the ASD, so our choices were limited, very limited. He was suffering, we had the money, simple as that.

But this isn’t to say we breeze through each month, we don’t. We have months when something has to give, and its never going to be the mental and emotional health of our child, so other stuff goes. We rarely go out to Dinner anymore, I don’t recall the last time we blew serious cash on a shopping spree, we don’t drive a flash car, and  we don’t have any hobbies that cost real money. This year we had small Christmas gifts from each other, because we have a £2700 bill to pay in January, all medical expenses.

We think about the Tesco bills, (obviously not the Wine bill, Tesco would go out of business!) We consider whether a break at half term is really necessary (not that it was ever “necessary” but I’m just making a point here)

It costs us around £80-£100 per month to clothe our little Dude, we have a strict type of clothing that is acceptable as the Apraxis means that very few fabrics can be tolerated. We spend around £80 per month on fuel, getting to and from appointments, the nearest being a round trip of 29 miles and the furthest 87 miles.

I’m not complaining (Well OK I am but not in a way that should be inferred as annoyed), and trust me when I say that we don’t live on the breadline. The Hubby is a highly qualified professional and that is demonstrated by his salary (ie they pay him the big bucks). But neither are we millionaires. Far far from it. We live well, we have a nice home, we go away, I have shoes (there are only so many sacrifices one women can make).

We are not entitled to claim any tax breaks, we do not get Carers Allowance, our Health Insurance does not cover Autism.

I am not crying out with self pity, I am SUPREMELY grateful that the Hubby is smart enough that his salary allows us to care for our child in the best of ways. In fact if he is reading this (you better be, I subscribed you!!) then he needs to know that his dedication to his career and to ensuring that we, his Family are cared for, is without doubt an aspect of his character that I both love and admire.  This does not however mean that I will not continually take the piss out of his occasional misinterpretation of the English language, Love only goes so far.

My point is (yes I did have one) that ALL Children cost money, they are expensive little buggers at the best of times. Ours costs more, not a bit more, but a lot more. As do all Children with Special Needs, not just those with Autism. And that’s fine. He is worth every penny, every overtime shift the Hubby does, ever  trip to foreign climes the Hubby makes, every day/week/month that I have spent as a single parent when the Hubby has been away.

We are not poor, we do not live on the breadline. I’m not making a case for Poverty here, that would be ridiculous, and insulting to those parents that do have real financial issues to face. But a Special Needs Child on average means your disposable income is reduced by £17,000 a year. And whether you earn £15,000, £50,000 or £500,000 – its all relative.

PS. The picture below is of one of our 3 cats, it’s entirely irrelevant to this blog,  but I felt I should share it as she is now so fat that when she rolls on her back, it takes her half an hour to get back up, and frankly it’s hilarious.  She is also, ridiculously expensive. And her expression of appreciation for us keeping her fat little furry self?  is to sick up on the bed, and use her bottom as a Weapon of Mass Destruction.

Time for that post Christmas Diet to kick in!

HaHaHaHaHa – Oh Dear, I’m sure some people are put on this planet purely to entertain…

http://distractify.com/fun/fails/24-flawless-responses-to-wrong-number-texts/

HaHaHaHaHa – Oh Dear, I’m sure some people are put on this planet purely to entertain…

http://distractify.com/fun/fails/24-flawless-responses-to-wrong-number-texts/

Adventures on the Road Map that is ASD, and coming to terms with Apraxia.

Utterly gratuitous shot of two hot men, I make no excuses!

I watched the James Cracknell and Ben Fogle Trip across the dessert thingy on TV over Christmas,  “Ben and James Versus The Arabian Desert”

 http://www.jamescracknell.com/news/2013/12/09/ben_james_versus_the_arabian_desert-293

 I quite like these two Chaps, I find them interesting and they bounce off each other nicely.  Of course the fact both are top notch male totty doesn’t hurt any! (Although I do find myself thinking Ben needs a cuddle and a nice Arran Jumper, and James needs, well its perhaps not appropriate here to state what I think James needs….!!)

But on a serious note, it was interesting to see how much James Cracknell had changed since his accident, when he was hit by a  truck during filming in American in 2010, and suffered a very serious head injury.  During the programme he made some very frank and brave statements about how his life has changed since then, the one that stuck in my mind was the following:

“….A frontal lobe brain injury massively reduces your ability to organise, plan, motivate and empathise…”

This was a thought provoking quote, and one I could on some levels understand. Tragic as Cracknell’s accident was, and my heart goes out to anyone who has suffered this type of injury, this is what my 7 year old son faces daily and has been doing since birth, even before we knew. My little Dude has not been in the terrible type of accident that James Cracknell was, but as well as having Aspergers Syndrome, he is also being diagnosed with Apraxia, which according to our OT (Occupational Therapist) is the most severe form of dyspraxia. In combination these two things mean he suffers from a very similar set of symptoms as Cracknell,…massively reduced ability to organise, plan, motivate and empathise.  This isn’t to say he doesn’t have a great many wonderful characteristics, which he does, not least his photographic like recollection of every RSPCA advert that’s been on TV over Christmas!

Apraxia, Aspergers, its all part of the Grand Adventure  that is ASD!

So Christmas was fun, small and low key, but hey, that works for us! The Hubby was a bit under the weather. I of course was a dutifully sympathetic and compassionate Wife, clearly demonstrated by my cries of “Man Up!”  in response to the his plaintiff  wail, “I think I have a Cold!!” – this is in combination with his Oscar winning “Swan with a broken Wing” performance. All in all its worth a watch, but only when the paint has finished drying…

But back to ASD, and more specifically: Sensory Integration Disorder, (which is where the Apraxia comes from.. I think? again, I’m confused and there is only so much Google can help you with!)

Here comes the science bit!!  (taken from http://www.spdfoundation.net – as my Phd is still pending…)

“..Sensory Integration Disorder is a term that refers to the way the nervous system receives messages from the senses and turns them into appropriate motor and behavioral responses. Whether you are biting into a hamburger, riding a bicycle, or reading a book, your successful completion of the activity requires processing sensation or “sensory integration.”

Sensory Processing Disorder (SPD, formerly known as “sensory integration dysfunction”) is a condition that exists when sensory signals don’t get organized into appropriate responses.  A person with SPD finds it difficult to process and act upon information received through the senses, which creates challenges in performing countless everyday tasks. Motor clumsiness, behavioral problems, anxiety, depression, school failure, and other impacts may result if the disorder is not treated effectively…”

Good huh?! but actually, its OK. (not really) It’s just another bump in the road map that is ASD, and it wasn’t a bolt from the blue as its been on the cards for yonks, its just been moved up the scale somewhat this last few weeks.

To be fair I always thought the little fella had just inherited his Mothers unfailing ability to fall over/onto/into anything within a ten mile radius, I have friends who can vouch for this. Its not often you see a grown woman walk into an office and promptly fall over a decorative plastic tree..

The bit that most folks don’t understand ( and until recently I included myself in this group) is that Sensory Integration Disorder doesn’t always mean those affected veer away from sensory input, although that is definitely an aspect. Our little bundle of complexity actively seeks out sensory input, in every way possible. He is in permanent overdrive to gain as much sensory input as possible, it looks like ADHD from the outside, but that’s a misnomer. He doesn’t have ADHD  (well no more than any other 7 year old!). He had an overwhelming desire to seek out any sensory input that will offer up the information his very clever little brain requires. All this Activity helps “wake his brain up”. Now I know what your thinking, we all have days when we need to wake ourselves up a bit, but not every second, of every day, of every week, of every month, of every year, potentially for the Rest of your Life?

Children with Sensory Integration Disorder are often intellectually gifted (Although not all, I’m not claiming my child is some kind of hidden Genius, although should he wish to invent an ever-lasting chocolate bar  I’m ok with that), but they are wired differently. The treatment is lengthy and requires patience, tolerance, stamina, a positive attitude and a shed load of cash!! This last bit tends to cause me to seethe quietly (and at times loudly) as the County we live in don’t have funding for children with Sensory Integration Disorder to receive Occupational Therapy…hard to believe huh. Imagine your child is sick and needs treatment, but because you don’t live in a specific geographical location, you don’t have access to the treatment needed. So unless your in the fortunate position to  be able to pay for private treatment, you basically go without.  So this years Jimmy Choos have bitten the dust, and we are having him treated privately. (The sacrifices ones makes! tsk)  We are in the very lucky position to: A) be able to afford to do this, and B) have a truly wonderful OT who is both down to earth and incredibly insightful.

So things are looking up, the Medical Folks are having another Multi-disciplinary meeting in January, and this should see things become more concrete in terms of treatment. It is also the first step towards the Statement of Special Educational Needs that we need to get – more on that later as its a fight and story in itself! (Again a County specific issue, North West Leicesteshire has the toughest criteria for a Statement of that of any County in the UK apparently)

On a personal level, its been a rough 2013. There have been many tears, and my life has changed in ways that may not show externally, but will forever leave me me with a dent in my heart. There are children, and adults, and families out there with problems far worse and far more devastating than ours. But pain, like so many things is relative, and to us this is at times the stuff of  nightmares. I am not who I used to be, we as a Family, are not the same as we used to be, but the little Dude is “exactly” the same, so for that we are grateful, confused, but grateful! He is and always will be the Love of my Life (Sorry Hubby;))

But also like so many other things in Life, most things can be overcome, including being miserable about something you cannot change! So on that note, Happy New Year, may 2014 see a greater sense of well-being for us all, and I leave you today with one of my all time favourite philosophers, Dr Seuss:)

Why Children with ASD don’t believe in Santa, but do understand that Pie = 3.14….

OK the above is a “slight “exaggeration (wouldn’t want to spoil my rep!), but it also has large elements of truth. Kids with ASD are hard to fool, I think its their sense of logic that makes them harder to palm off with fairy-tales and urban myths. Today’s discussion Class is to do with “Literal interpretation and why colloquialisms are great comedy!”

my boys, both bright, both beautiful, both really really annoying….

Before I get into today’s rant/debate/discussion, let me set the scene for how my day has gone so far: It started well with a trip to purchase an extremely expensive brand of French lingerie, which cost me well over £300, but I like to think this outrageous expenditure is nicely balanced by the fact that when the Bras are no longer usable we can sell them off to Festivals to be used as Beer Tents…

Things went rapidly downhill when after purchasing outrageously expensive lingerie I got to the car park and discovered my car keys remote control “thingy” seemed to have given up the ghost (no pun intended…!), after spending ten minutes trying to make it work I spotted a Green Flag Roadside Rescue van and thought, “Well I’ll go ask them what to do” Trotted over feeling safe and secure in the knowledge that a highly trained professional would be able to assist me. Explained my predicament and looked up hoping  to be met with much automobile wisdom, and some action on the key front. Was instead met with a highly amused look and the rejoinder: ” You could try putting the key in the lock, that usually works quite well”….Decided to take this advice on board with as much dignity as I could muster (which was frankly very little).

So as you can see the day was going well, finally got home after de-touring via Kazakhstan (damn you GPS lady, why must you always be right!!) and taking my life in my hands on the M1 – clearly it was “Idiot Day” on the Motorways of England. Upon reaching the family residence I realised I had forgotten that it was in fact my Wedding Anniversary, frantically rifled through old gifts that have been given, in the desperate hope that a selection of toiletries and beauty products would suffice as a Wedding Anniversary Gift for the Hubby, then decided as he had not mentioned it, and therefore forgotten.  I would just bin that idea and act indignant when the Hubby finally realised he’d missed a trick!

The day has been nicely rounded off by picking up the offspring from School to discover that today is a “Twerking” Day. I tell you people when my little bucket of madness is on a roll Miley Cyrus has “nothing” on him! Course his is all involuntary, whereas Miley chooses to look like shes having some kind of seizure. We have had the full repertoire today, grunting, snuffling, growling, arm and leg twitching, involuntary flexing of most of his muscles, kicking his own butt repeatedly ( try this at home folks, its waaaaay harder than you think, and frankly exhausting!). All in all pretty painful to watch, and frankly really irritating. I know your not supposed to say that, but a child with motor and vocal tics is downright aggravating, its not dissimilar to being stuck in a room filled with highly agitated Hamsters, in fact its not that peaceful. In medical terms I believe its too do with “seeking bio-feedback”, but honestly its just plain annoying!

But back to the topic of today’s blog: Why kids on the ASD cant be easily fooled, but can have real problems understanding colloquialisms. Any ASD child (or adult for that matter) will really struggle to understand colloquialisms. Now to be fair the Hubby often looks at me blankly if I I speak in colloquialisms, the day I told him “hair of the dog” would help with his hangover is forever embedded in memory for the utterly blank look that followed my statement, rapidly chased up by his indignant “How on earth is eating dog hair going to make me feel better?!” I should at this point mention that the Hubby is Belgian, not just a complete idiot. A language barrier makes everyday things like this difficult to follow. Kids with ASD have the same problem (clearly I really struck lucky marrying a foreigner and then having a kid with ASD!)

Their level of literal interpretation varies enormously, much as the shades of grey that exist on the ASD vary. Our little dude is smart enough to realise that the phrase “its raining cats and dogs” is an expression/metaphor. But he spent many a day trying to work out how “pigs might fly”. Its a funny old World having a child with ASD.

This segways  nicely into the “The theory of mind” This is a whole blog piece in itself, but long story short its to do with the argument that people with ASD lack the ability to recognise that other people might see things differently. I think there is significant truth to this argument, but then I also think anyone with any ounce of attitude probably feels this way too – is it just a case of feeling that your point of view might hold more merit than someone else’s? If so then I too have Autism…….

A point worth remembering is that kids with ASD, particularly  the high functioning/Aspergers end of the Spectrum are always of average or above average IQ. They are no “dumber” than the rest of us, in fact often they are brighter and more switched on. I used to try in vain to make my little box of frogs form letters correctly, and read with inflection and emotion. I finally gave up when somebody pointed out to me that: “Well OK he doesn’t like to read, but he just did an age 11 maths test, and hes 6!”  Point well made.

As ever Autism and its myriad of trials and tribulations, shades of grey, ups & downs, and tears and tantrums, is a minefield. Those who have children with ASD feel the weight of the enormous responsibility that having these children bring. (never kid yourself that any parent of an ASD child doesn’t blame themselves,- you take it to your grave) But we also have an insight into minds that see the World through different eyes, and whilst we are never able to truly see what they see, the journey we take with them brings with it never-ending revelations and moments of wonderful clarity. The day my little Fella looked out over the Ocean whilst we were up in Northumberland, and said to me: “Mummy its quiet here, I like it, my head would like to stay here. Its too noisy everywhere else”, will stay with me for ever. Moments like these make the harder times easier to bear….actually no that’s a load of rubbish, the hard times are hard times, end of. But sometimes its good to kid yourself:)

Our journey with Autism is becoming easier as we learn more, understand more, and drink more Sauvignon! It will always be a struggle, I am by nature paranoid and over-sensitive ( I can see everyone who knows me nodding vigorously in agreement at this point) but as the Hubby often tells me, children with ASD are given to parents who will fight tooth and nail to have their voices heard.

I have to go now as I am attending a Charity Ball this weekend as “Vampire Barbie”, and need to make sure I have enough Dentafix to keep my fangs in…if your good I’ll show you a photo of how Trailor Trash I can look when I try hard.

So today I will end with one of my favourite quotes, taken from : Mommy Dearest from The Quirk Factor: Resistance is Futile,  (as found on Odd One Out blog)

Autism (with a capital “A”) to me, says that I accept my child wholly. I celebrate his differences and his quirky-ness. I advocate diversity. I try to empower him. I am proud of his successes, no matter how small they seem. I hope he holds onto the compassion he has in his heart into adulthood. I do not think he needs “fixing”. I am proud that he is my son, and sometimes I am humbled by that very same thought.

Do we marginalize children with Autism? – will I ever be allowed back in that Bar in Soho?

The main reason men get into trouble….

Hubby: “Honey are you having a bad day?”

Me: “Why do you ask?”

Hubby: “Well there’s a 5 kilo box of Thornton’s chocolates in the cupboard……and its empty”

Me:: “……and yet “still”, you as the question, writings pretty much on the wall there Id’e say wouldn’t you…!”

The above quote, which is of a conversation I had with my Hubby has little do do with today’s blog, other than the fact that I am currently wishing I hadn’t eaten 5 Kilos of chocolate, as I need to get into a particular dress in one week and I’m pretty sure those sneaky little pralines are happily dancing the fandango on my hips!  However, lets move on.

Do we marginalize children with Autism? This has question has been bugging me for weeks so I thought Id’e share it with the group:)

Do we pay less attention to those on the Spectrum?  because it’s hard to diagnose, harder still to quantify and very difficult to substantiate with documented evidence? Because its such a rapidly evolving and changing disorder, which doesn’t necessarily do today what it did yesterday? Does this mean that we keep it on a back burner?  I have read a few articles lately (in-between watching the West Wing re-runs – Oh how  I love Josh) and several of them have pointed the proverbial finger of accusation at various medical bodies, society, government, and probably the bloke who lives down the road at number 24 (this is an example, please don’t take this literally as I happen to know the bloke at number 24 and he seems very nice.) But I think there is a bigger picture here.

Recently I saw Autism categorized  as “creative intelligence” – which is possibly the BEST description of this overwhelming disorder that I have ever heard ,in fact I really wish I had come up with it myself and could claim credit!

A “perfect kid” is generally considered by Joe Public, as well as the underground “Competitive Mum” brigade (yes they do exist although I’m happy to report I don’t know any…well OK maybe one or two.) as a good team player,  who does well at reading, writing, spelling, maths, is in several after school clubs and integrates well into group situations, as well as showing a solid streak of Independence and a growing trend towards team leadership.  If they are also able to speak two languages fluently and eat all their vegetables then that’s just bonus points.  All of which is good stuff, it sets the bar kinda high but it is a nice picture to paint. Wouldn’t it be nice if we all had these perfect children. Of course they also sound remarkably like those weird little kids from “Children of the Corn”, but maybe I just watch too much TV..

Every child has a wealth of characteristics, some wonderful and wise beyond their years, and some which frankly wouldn’t look out of place on a particularly good episode of Super Nanny, but no child has ALL of the above, and why would we want them to? Isn’t that half the fun of growing up? that you get to learn all this other stuff. Making mistakes along the way, some small and easily forgotten, and others of legendary proportion and resulting in a ban from certain establishments in Soho (its possible that last one is just me..)

Autism and all the many shades of grey that exist on the Autism Spectrum rarely allow any of these children to fulfill any pre-determined roles. Each child with any kind of ASD has to work hard to fit in, rarely is as comfortable in social situations as their peers, and often suffers an inordinate amount of at the least, discomfort, and at worst, physical and mental trauma when pushed or expected to, “fulfill their potential” The “failure” of reaching this high level of standards is also just another dent in the confidence for a child who learns very early on that they are “different”.

Our (“Societies”) standards for our children are insanely hard for them to reach, its a bit like putting the sweetie jar on the top shelf and then saying, “Well if you can reach it you can have it” – to a 3 year old.  Nothing like making something so difficult that its not even worth trying to aim for in the first place. At the risk of sounding like I was born in the 1860’s – didnt childhood use to last longer?

When I was pregnant I read every book I could lay my hands on about “How to be a good parent” now I didnt reach too high. I bought “Parenting for Dummies” first, I know my limitations. Motherhood does not come naturally to me, never has and probably never will. I still look at my little Dude and think, “really REALLY should have bought a couture handbag instead”. But I did read them, all of them. Yet the most significant information I have ever received about how to bring up your child, is from other parents, many of whom I admire for their ability to see their children as, Children. Not mini adults.

Children with Autism, or Creative Intelligence as I shall now be calling it really are bright, intuitive and loving children, but I do sadly, think they are marginalized, by society, the education system, and the public in general. I’m not beating a drum here for any demand for equality etc blah blah. Just stating how I personally feel about children with ASD. I also don’t think there is any inherent maliciousness or desire to harm in this marginalization, its just the way it goes.  Same as any minority group I suppose. There are great things being done to address this, one organisation which I avidly watch and listen to is The National Autistic Society, their current “Push for Action campaign is a wonderful example of how much can be achieved if we all help that little bit to spread awareness –  http://www.autism.org.uk/news-and-events/news-from-the-nas/gps-to-make-autism-a-clinical-priority.aspx  

I just think that like most things we don’t understand, it’s easy to brush Autism under the table ( I also regularly brush half eaten cat toys and the odd empty chocolate box under there too), and equally like most things we don’t understand, when we do learn to comprehend what its about, most people are likely to be open minded and appreciative of how hard these children have to work. This isn’t self pity, as although I have my moments of feeling desperately sad for my little Dude. I am also entirely aware of how easy he has it compared to many children in the World. It’s often surprising how uniformed we all are about thing’s that go on around us, until we find ourselves touched by those issues.

OK rant over, I blame the re-runs of the West Wing, they always work me up, and make me want to run for President of the United States of America, which is likely to be a challenge as  firstly I am, “not” American, which I think is integral to the role, and secondly, that whole Soho situation is likely to come up and I don’t think they want “That sort of thing” in the White House……which honestly is  a shame as I still have those maracas.