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..

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:)

It’s just a line! Just stand in the damn line! – Caution: This blog contains content unsuitable for sensitive ears..

Just dropped the offspring off at School, all I wanted him to do was stand in his line today, but he didn’t want to, he was horrified at the idea. So I suppose the simple thing to do would have been to let him loiter around the edges, like all the other days. But I had a rough night, and my tolerance is low, so I insisted he stand in the line. He now hates me.

I am SO SO SO Bored!! of feeling like way!, This is not what I signed up for!! You are supposed to get married, have a baby (“Glow” throughout the entire pregnancy – yeah that shit never happened either!), and live happily ever after. At no point in the fairy tale was there mention of: ASD, Sensory Modulation Disorder, Stretch Marks, Naked Mother-in-laws, endless medical appointments, and the overwhelming desire to sell my soul to Satan and rule the World from atop a fiery mountain, whilst raining down hell-fire and damnation on all who piss me off!  And whilst I’m on the subject of selling my Soul, if the goddamn cat pees on the sofa again I am making him into a Rug!

If all of the above had been in the job description I wouldn’t have bothered, I would have happily carried on partying and just ended up living alone in a big house on a hill with 98 cats – which even at this stage still seems like an attractive option..

Right, well rant over, is it too early for a Gin & Tonic I wonder, “Breakfast of Champions” as a good friend once told me. Course he was also a drunk but still………..

Priorities – and why its never as easy as it should be!

I have a male cat with a bad leg, so therefore what should be a minor incident is in fact a major catastrophe, my Mother-in-law arrives later today, so the Gin is going to get a hammering tonight, and my little Dude has a Psychologist, and Children’s Mental Health Nurse coming to see us tomorrow…. Its hard to know what to do, currently im going with; Drinking the Gin, Having the Cat stuffed, and booking the Mother-in-law into Hotel.  Or, should I book the Cat into a hotel, have the Mother-in-law stuffed, and “then” drink the Gin?  Priorities! – always a quandary!!

Is this the Dentist? – “Um, no, this is the Opticians, but maybe you should stay, get a check up”… Autism strikes again!

One of my favourite quotes, by the ever reliable Mr Oscar Wilde:

“To Define, is to Limit”

This brief statement always makes me think twice. About whether labelling our delightful but complicated child is a good thing, or a bad thing. Its a hard question to answer, and there are valid and substantiated arguments for both sides. Does labelling a child define them? Not just in terms of others perception, but with regard to their own ability to have freedom to be what they choose to be? Or does the label allow them to grown with the help they need?

Somebody said to me today, “Well he may choose to bum around the World for the rest of his life, but that would at least be his choice” Wise words, and beautifully demonstrating my point, that all of this, all this angst, this anger, this pain, the tears, frustration, and the desperate attempt to make others understand that we are not asking for some kind of exceptional input, just a small amount of support, understanding, and compassion.  All of which we want to ensure one simple thing:

That our child does not fall through the loopholes in the system, that he has the same opportunities as your child, that’s it, nothing more.

Without grandstanding our own Academic achievements in this household, between us we have two Bachelors degrees, a Masters and a shed load of letters after our names, granted most of these are after the Hubbys name,  but I’m not short of a few myself. We also have, “The Worlds most expensive Cat”. (which isn’t really relevant to my point but I like to keep you on your toes, make sure your paying attention….there may be a test later!) This sort of suggests either we are really bad judges of pet character, or, we have not put those fancy titles and letters to as much use as we should have.  I’m digressing (what me?!) but let me fill you in on the cat population of the house, we have 3 Cats, in chronological age order:

Babycat, aged 2, Special skills: able to leap small buildings, sleep in the bath, and bring home numerous dead creatures.

Mac, aged 3, special skills: none, unless you count waiting for pigeons to die of old age and fall off a fence, then sauntering home with them, depositing them in front of you and sitting looking smug, whilst quite clearly telling you in that psychic way that cats have “It put up a fight but my Ninja fighting skills soon sorted it, now reward me, preferably with fillet steak or smoked salmon” Of course all this feline scrapping does rather result in monumental medical bills, we could have bought a Chateau with last years vet bill.

Inchy, age 108, special skills, eating, creating noxious fumes and walking into walls – I’m not sure if cats get dementia, but I would be prepared to put not insignificant money on it being true, based purely on the fact our cat growls at herself in the mirror, regularly falls down the stairs, and at the last count has walked into the patio doors approximately 9001 times.

Anyway, the reason for todays Blog title is because whilst out with a friend earlier we went our separate ways and agreed to meet at the dentist (exciting life I lead huh….). In my usual “away with the fairies” manner I managed to trot happily into the Optician, bounce up to the desk expecting to see my friend, and then suddenly realised the pictures on the walls of Glasses, Contact Lenses and all manner of things Optical, “probably” meant I wasn’t in the Dentist. Considered trying to blithely brush it off, but could tell by the amused look on the receptionist face as I tried to slip out, that any attempt at a tactical retreat really wasn’t going to cut it. So went with, “This isn’t the dentist is it” (it was less of a question and more of a statement of fact), she smiled, with one of those smiles you save for the intellectually challenged, and said, “No, this is the Optician, the Dentist is the next door down, its the one with the big sign on the front, saying “DENTIST”….

I tell you having a child with Autism makes you appear to be a total idiot, or at least I’m hoping its just “appearances!”

But back to the topic under discussion,

The offspring has Asperger Syndrome and whilst he is not as withdrawn as a child with more severe forms of Autism, he is cautious about approaching others, will often linger with me in the playground rather than run straight off and play. He can be  “awkward” around others, seems to misunderstand a lot of what is said, or happening. He can also be very obsessive, and bang on about a specific subject for so long that you can die of old age  and/or boredom if you don’t stop him.

He does at times refuse to speak to people, just acts as if they don’t exist, or hides away. That aspect of all of this is one that I find particularly distressing. No mother wants to see their child hide away; it’s why we now avoid parties. The strain on both of us is too much to bear, I hope with all my heart this aspect will lessens, as it worries me that as he matures he may be side-lined. The saving grace of this particular element of his Aspergers is the fact he is a humorous child, and can be very funny. He also has a well developed sense of sarcasm, cant think where he gets that from….

He is fantastically articulate, his use of vocabulary is far above his chronological age, and his use of expressive langue is impressive, he can also do this in English and Flemish, not bad for a “special kid”. One of the most difficult aspects for children with High Functioning Autism or Aspergers is that fact that they hide so much of what they are thinking and feeling. The child that you see at school is not my child, its part of him of course, but far  from all of him. Suppression of emotion and intellectual ability is a classic symptom in these children. And sadly often goes unnoticed at school, or is put down to laziness, lack of effort, and the classic “could try harder”. All so very very far from the truth.

I will never stop fighting for my child, it worries me sometimes (often) that I am missing a lot of his life, because so much of my time is spent trying to find ways to assist him, particularly academically as we are unfortunate to have a School that appears unwilling to work with us. But I’m not here to demonise a school. (even if I do have a few voo-doo dolls in my knicker drawer…)

I do really worry, am I so focused on “helping” him that I am not seeing the smaller stuff? Do I spend enough time with him playing? just being his mum? rather than his protector. I don’t know, I suspect the answer to this is, Yes, sometimes I am overly focused, and cant see the wood for the trees. Then other times I manage to climb down a few rungs from the Angst Ladder, and see my child through fresh eyes, these times are precious. Because they are becoming fewer, and that is a situation I have to address. Which I don’t want to, I don’t have time to look after me. This isn’t self pity speaking, its just how it is. But I also know that I don’t want to look back in 10 years and think, “Where did my young child go? where was I when he grew from a young child into a young man? how did I miss that?”

This is an area I have to work on, the GP suggested psychotherapy, but we all know how that ended last time. Its not often you hear of somebody being barred from a hospital…this is avoidance tactics of course. I will at some point have to face facts.

But I think I had a break through today, in a fantastically sarcastic and incredibly politically incorrect way, but hey, you gotta take what you can get sometimes! We had friends round who have a lovely little girl that my little dude really likes. Not because she is a girl (as if mummy!!) but because she has a wild and wonderful, vibrant spirit that matches his own in many ways. Mid play  he came into the kitchen and said, “Mummy, she’s driving me mad!” and I replied, “Oh Hunny, that ship sailed a loooong time ago!”. Felt rather pleased that it appears I am learning to accept the fact my gorgeous boy is a little on the quirky side. Until the howls of laughter and yells of “Oh my god I cant believe you just said that!” assailed me from all sides. Oh well, its a start,:)

Eating chocolate cake in the shower……and why Autism is a one way ticket

I have just, quite literally, eaten chocolate cake in the shower. Its not like I sat down, thought, “hmm, quiet night, not much on the TV, I know,  I’ll get a giant Betty Crocker Chocolate Cake and sit in the shower and eat it!” It just sort of, happened. I’m going to use the fact the little fella has Autism as an excuse here…..its weak, but don’t pick on me, my kid’s “special” remember!!

.

I love the above quote, it’s so easy to say “I will do it tomorrow”. In fact in my opinion its the main reason Diaries and Agendas were invented, not so we could all become incredibly efficient, but so we could write down all the things we are going “to do tomorrow”.  I have a paper diary, a wall diary, an agenda in my phone, and various yellow  “note-its” stuck around the house, all with things on “I am going to do tomorrow”.  I even stuck a yellow note-it to the cat once, figured a “mobile” service might have more impact. Turns out I was wrong and cat didn’t seem too impressed either.

I’ve been feeling philosophical this week (try not to laugh out loud), mostly brought on by a situation that my little fella was put in, that was “Completely Avoidable” Not by us, and not by friends, but by his School. Now I’m not going to get into a big bashing session on the School. Its a good school, with nice people in it, but there was a distinct lack of foresight and compassion shown this week.

Charlie Banana did not make Sports Day, now this was to be expected, and had been discussed with the school on previous occasions and then on the day itself. We didn’t lie about why our little man wasn’t there, we told the truth, why wouldn’t we?  The school has known for 18 months what the situation is. To cut a long, and frankly painful story short. all the children in his class were given a certificate for attending Sports Day, except my child. Who desperately wants to fit in –  so they left him out. Even though he attended every practice session (and won the egg and spoon race, twice!! Major career choice there if the Egg and Spoon race ever becomes an Olympic event!), participated fully in the run up to the day despite trepidation, and even though I explained carefully why he wouldn’t be attending. But they still gave every other child a certificate, except mine. A situation that would be hard for any child to comprehend, let alone one with the added handicap of being on the ASD. Hard to figure that one out huh? It may even appear insignificant, and I suppose it is really. But it brought my bright, happy child to tears.

Sometimes taking the moral high ground, though admirable is a waste of time. Sometimes you need to get down and dirty and scrap it out in the mud.

Today was one of those days, and although I hate taking this route, there are times when to protect my child, and his mental and emotional health,  I need to do so. Its not a pretty process, its not one I enjoy, and it usually results in tears on my part. A “tiny” amount of foresight, compassion and consideration could have saved everyone involved a great deal of pain and stress. He is 6 years old, still so young . There was no need for today, shame on you.

Hence my philosophical bent this week! The miracle that is hindsight, and how a little bit of consideration could have prevented all of the above. (see photo below of my little fella ably demonstrating the value that is “hindsight!)

Saw it, Tried it, Hated it…lesson learnt

But back to the whole Chocolate Cake aspect of today’s ramblings..

Last night I went upstairs to check on the little dude, turns out he had snuck into our bed (Hubby on night shift) and was flat out, snoring like a Walrus, and surrounded by 2 out of 3 cats. He had also found my candy stash, so was entirely likely to wake at around 3am and bounce off the walls due to sugar overload. I should blame myself for being a terrifically inadequate mother/housewife,  and using my bedside draw as a chocolate storage compartment. But instead I think I will just find a better hiding place…

But back to the chocolate cake, for some yet to be fathomed reason, (but probably due to being monumentally tired, again!) I had taken the cake upstairs with me when I went to check on the offspring, once  I had done my maternal duties (incidentally remind me to tell you the time I came upstairs to check on my child, and found my in-laws, naked, on the landing….) I realised I was stood in the bedroom with cake in one hand, and fork in other. So I decided to eat it, seemed like a shocking waste not too.

As bed was fully booked by kid and cats, I trotted into study, to find other cat sat on desk, so went into spare room and then realised I had thrown every item of summer clothing I possess onto the spare bed, as need to pack for next week. This left offspring’s room, which has so many dinosaurs in it that frankly its a bit like being on the set of Jurassic Park. So in a house with 4 bedrooms, but only 3 occupants, I ended up in the bathroom, sat on the side of the bath. Turns out that’s not too comfy, hence shower. Surprising how comfy you can get in the shower if you put a towel down.

Now I know what your all thinking, “Why didnt she just go downstairs and sit on the sofa and eat the cake?” – its a good question, the answer is: because my brain doesn’t work properly anymore, which is nothing to do with seeing my father-in-law naked, although to be fair that probably didn’t help. It’s because I have to look after my child, who has Autism, and I’m not very good at it yet.  I grieve for the life I thought we were going to have, and haven’t yet come to terms with, or accepted the situation we are in. Currently Life is a Sky Scraping Roller-coaster of a ride, with terrific highs and abysmal lows. It seems I paid to get on, but didn’t realise it was a one way ticket.  I want to get off, and at the moment, I cant.  Which is why I eat Cake, in the shower, in the middle of the night.

I have not failed. I’ve just found 10,000 ways that won’t work. ~Thomas Edison

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Here is a basic definition of high functioning autism: Thank you mighty Wikipedia!

“High-functioning autism (HFA) is a term applied to people with Autism who are deemed to be cognitively “higher functioning” (IQ>70) than other people with autism. Individuals with HFA or Asperger Syndrome, exhibit deficits in areas of communication, emotion recognition and expression, and social interaction.  There is no consensus on the definition…”

As you can see, its not black and white, even the Experts cant agree, so how on earth am I supposed to figure it out? I’m just his Mum, I can barely make it from my front door to the car without having an emotional crisis. (maybe I’ve got it too…..oh no that might just be the Sauvingnon again). Its easy to shrug Autism off as a “fad”,  an, “on trend diagnosis”, or a reason for excusing your child’s apparent bad behavior. But as a wise man once said,

“Don’t judge a person until you have walked a mile in their shoes” …..

Well mine are 5′ killer heels, so best you get practicing! 

As you may be able to tell, today has not been a great day. There are brief times when you realise you have sunk a bit lower than you thought. This light-bulb moment came to me when I was sat on the sofa watching “Pet Rescue” just before starting work, and a dodgy looking mouse had to be sent to Mouse Heaven.  Now I would be the first to say I’m a soft touch when it comes to anything soft and furry, but a scrawny grey mouse?  not a cute white one that looks like it could sit up and talk to you, “Disney Style”, possibly with a catchy rap to round things off.

No this was a grey, saggy, frankly pretty knackered looking creature that had seen better days. But I howled like a baby. You know things are not going so well when the death of a small rodent brings you to chest beating tears!  Anyway below is a picture of a baby elephant. There’s no real link, but apparently I’m not putting enough pictures in my blog…….well actually there sort of is a link!

a wittle tiney ewelpahnt – sorry….

baby animals, does it every time, somebody go get the Kleenex!

We took Charlie Banana to Chester Zoo a couple of years ago, went the whole 9 yards and thought, well its too far to go in a day so we will stay overnight. Found a lovely hotel, quiet Country House  style “pile”.  All very Sense and Sensibility, all it needed was Judy Dench to come floating out in a full Edwardian costume and we could have been on a film set. But anyway, we rock up, go to our room, immediately nick all the toiletries and the coffee and tea and hot chocolate sachets (I cant help it!! – they put it in the bill???!!!). The overnight stay goes pretty well, dinner was a bit of a trial as the restaurant was a bit noisy and busy but we managed, found a very quiet, out of the way table in the corner and sat the offspring between us so he felt “safe”.

Got up the next morning and trotted off to the Zoo, to be promptly informed when we got there “I want to go home” Now I know what your thinking  “Just make the little toe-rag walk round?  kids are kids and like to whinge!” But that’s not the case with ours (well OK sometimes it is, but its hard to know “exactly” when) This is one of the things I find hardest about having a child with Autism, you never really know when they are just being little toe-rags, and when what is bothering them is a genuine fear or total inability to understand. Can you afford to make the mistake?  If the answer is Yes then your a braver person than I.

In other matters, somebody told me today I sound like Kathy Lette when I blog, which is very flattering, so thank you for that:)  I also got sent an  article today entitled “How to write a top blog”. No mention was made of sitting on the sofa, knocking back industrial size glasses of vino (I’m not an alcoholic, honest) and bemoaning the fact the cat, “Always”, chooses to chuck up on the carpet rather than the laminate. I wouldn’t mind this so much, but we only have one rug in the “entire house!”.  It would be harder to “hit” the rug, than miss it!  I swear the cat saunters downstairs after a trying 18 hour nap, and thinks;  “Yep, that’s looks nice and clean, I’ll think I’ll just vomit up a furball”

But back to my point, it was a really interesting article, but I think was it was designed to aid you more in”making money” from your blog, rather than attempting to use it as a cheap form of therapy. Although as the Hubby pointed out, its “not that cheap when you drink £15 bottles of wine whilst doing it!” – I like to think I made my point clearly when I actually “went” for a therapy session and presented him with a bill for £125. Therapy didnt work so well for me, I found myself just wanting to bang my  head against the wall every time they asked me “how do you “feel” about that? – maybe its me, maybe I’m just not cut out for therapy, but  my over-riding desire was to get into the filing cabinet in her office, lock the door and sniff the Tipex…

Tomorrow is Sports Day! – or not. Having had numerous debates, endless questions, and even at one stage a re-enactment of the event itself, we have come to the conclusion that Charlie Banana will be staying home tomorrow.  Its just not worth the aggro, or the angst, or the anxiety, or any other number of words that being with “A” ( I feel like Big Bird on Sesame Street). Its a Sports Day, not Mastermind (which he might do better at ironically)  I always sucked at Sports Day, mostly because I developed Katie Price like boobs at the tender age of 13 and suddenly found I had myself a fan base consisting almost entirely of 16 year old boys….but that’s a whole other blog!!

Today has been a bad day, I have felt tired, worthless, useless, and basically like a failed parent. But a text message to some girlfriends resulted in a “Rescue Visit” this evening, which I know will make me feel better, and also somewhat like the dodgy mouse as there is always a risk with these two particular friends that they might just have me “put to sleep”….;)

But the end result of today will be that its yet another day, like many before it, and I am sure many more that will follow it. Some are good days, some are bad. But like most other things in Life, you don’t have any choices, there is not getting off this particular train. Course had I known at the start I might never have got on, but then I wouldn’t have the little fella that I do, and despite all the things that he isn’t, there are a million more perfect ,wonderful, bright and beautiful things that he is.

So as you can see, this is why the title of today’s Blog is what is, because I haven’t failed, I just haven’t “quite” figured out how to cope yet, and until then?   I will buy shoes, drink wine, and remember that things could be worse…..but to be strictly honest mostly I will just buy shoes.

It beats Therapy…