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!

 

 

 

 

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:)

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!!

Jam-Chinas, Year 4 Maths tests and why Autism is no barrier to a sly sense of humour.

Well, where to start! Sorry its a been a while but we have been off on holls, which to be frank consisted mostly of me drinking G&T’s by the litre, and the little dude dive bombing glamorous size 0 Spanish hotties in the pool. As he’s such a giant monster of a 6 year old ( I blame his 6’4 Daddy), it was not dissimilar to a Free Willy movie. Needless to say the sultry skinny beauties were horrified, I did try to stop him, honest………

We had a great time, went back to a Hotel we have been to before that was super familiar to the little fella so that took some of the pressure off. Journey was a bit draining as the current obsession is ensuring you have your seat-belt on at all times, in fact at one point it was suggested we have seat belts on the toilets, “In case there is an Earthquake and we fall off?”. Hmm, cant say putting my Toilet “Seatbelt” on would be top of my To Do list should there be an Earthquake.  But I suppose you can sort of see the logic.

We arrived to a wall of warm soft air, there really is nothing like stepping off a plane of recycled bugs (yes i managed to catch a cold) into a summer breeze, one of my favourite things about holidays in fact. We spent just under two glorious weeks swimming and eating and generally watching the little fella run around like a headless chicken, good times.

On a semi-serious note ( I like to throw them in occasionally just to make sure your paying attention…), I watched a Louis Theroux documentary recently, entitled “Medicated Kids in the US”.  It made for both interesting and thought-provoking Television. Many of the kids seemed to fall firmly within what could be considered normal boundaries of  adolescent  behavior, but were medicated up to the eyeballs. Now I would be the last one to cast stones, what with living in our own Glass House and all. However, the line between medicating your child for the sake of your own mental health, rather than a hope to see a significant and rapid improvement in their lives, is clearly so fine it borders on invisible. It’s an issue that I anticipate we will have to face in the not too distant future.

We have twice now had our Consultant Pediatrician tip-toe around the idea of medicating for ADD/ADHD – I say tip-toe as discussing the issue of medication is a sensitive area. Our little Dude has more than one diagnosis floating over his head, one of the “smaller? lesser?” of these being that of ADD/ADHD . Medication options have come up, but are usually greeted by a growl from me, hence the tippy toes. I am not against medication, in fact I’m the first one to reach for the Valium when things are bad, or my Mother-in-law is due to fly in…

But, its a rocky road, and once started down the climb back up is longer, and further, than anyone should have to navigate. At the end of the day my child is 6 years old. Just 6. That’s 72 months on the planet, hardly enough time to determine which flavour of Haagen Daaz you prefer, so not really sufficient time to develop mentally and emotionally, and yet medication is on the Agenda?  Medicating children with any form of mental illness is not an exact science, and whilst I would never profess to be an expert, or have any hands on experience of this approach, well suffice to say it’s not something that should be entered into lightly.

But back to the Holls, the little Dude did really well, we had a few wobbles but most we were able to anticipate, some of which we had planned for, and others we had to wing! One which will be looked back upon fondly occurred at Birmingham Airport. We had checked in, and were just wandering round heading in the general direction of Departures when we passed Costa Coffee.  Under normal circumstances absolutely no reason for concern. However on this occasion there were three Japanese businesmen sat earnestly talking and comparing diagrams on laptops. Little Fella took one look and suctioned himself onto me as if Godzilla had wandered in and asked for a Mochachino. Ended up having to put my hand in front of his eyes and gently walk him past, whilst whispering “its ok, its fine, they’re just having coffee”. Another nail in the coffee for the British Tourist Image!  They why’s and wherefore’s of what makes a child with Autism freak out about certain things is one of the Big Questions, and likely to always be just that, a Question, with no real Answer. Best to just accept and deal ( I say that like its so easy…)

Eventually we got there, after a 2 hour delay which saw Duty Free do remarkably well and the Hubbys Credit Card start to wear out.  Hotel was lovely, big enough to be spacious, and small enough to not overwhelm, we even managed to a suite on the same floor we had 3 years ago, which was a bonus. We spent the entire time in the pool as the sensory input of being in the water ticks so many boxes for our little fella that its nigh on biblical how peaceful he finds it. Of course this does also mean that you spend an inordinate amount of time in your swimsuit. We seem to manage without fail to end up seated next to a bevy of gorgeous lithe skinny beauties (why do they hang around in groups? is it not bad enough that they look like they do, without adding to the pressure by working in gangs!)  I like to think that personality and brains win out over the shallowness of sheer good looks, but apparently falling asleep on your  sunbed and snoring like a Walrus (I had a cold!!), whilst dribbling into your towel somehow negates this theory.

You see all shapes and sizes around a swimming pool, and we all of us, even those that profess to be body confident, we all make judgments, but you cant see Autism. You cant see the trauma and confusion that goes on inside the mind of a child with any ASD.  Its truly a hidden disease, and whilst i could write you a long list of all the times I have seen my child cry, or become afraid due to something that a regular 6 year old wouldn’t bat an eyelid at, well there isn’t really any point. Simply because me telling you doesn’t make it any more real, any more visible.

I have been on the receiving end of a lot “advice” just recently regarding how to deal with Autism.  My own personal favourite has to be, “Oh hes just being a normal 6 year old!” Which on occasion is I am sure completely correct, but is on other occasions so far off kilter that it staggers me how anybody could be so blind.  Now this sudden influx of advice may partly be my own fault for coming out of the closet, or possibly the sign on my forehead that says “Trust me, its not a good idea….” has worn off.  Either way it never fails to amaze me how people feel the overwhelming need to express their opinion, even when its uniformed, ill-judged, and borders on the rude and arrogant. The old adage “Never judge a book by its cover” is so very true for children with any kind of mental health disorder, what you see is rarely what your gonna get! Please by all means feel free to ask me questions, or offer me opinions, but don’t profess to lecture/condescend/or spout rhetoric about how its “all in your head” – I would be so grateful it if was!  I think Betty said it best:

But lets talk about something lighter, which is most definitely not my hip measurement after two weeks of hotel food! I watched my little fella read through a Year 4 Maths Test last week (he is about to start Year 2 in September), he then promptly completed it in about 10 minutes. Impressive huh?! Yet the year 1 Maths Test was an impossible task, frustrating stuff, for him and me. The Year 4 Test was a visual test, and that’s how he learns, which explains the problems he has in class at School.

We have had a fun Summer, its gone so quickly and some days have been good and some not so good. But my favorite quote of the Summer has to be as a result of a discussion regarding anatomically correct names for male and female “bits!” As the little dude had asked I decided to be very grown up about it all and answer his questions. Figured I had done remarkably well until he announced with much solemn seriousness in Tesco, “Mummys got a Jam-China”………!

Whatever else he is, my son has a profoundly well developed sense of humour, able demonstrated by his sly grin up at me and the check out girl as we both proceeded to fall about in fits of giggles. He is, as ever, daunting, scary, irritating, and wildly wonderfully perfect.

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…

 

Aspergers, and is being a drugs mule a career choice?

Loooong day yesterday, right up until I fell asleep on the sofa, mid Season 4, Disc 3 of Battlestar Galactica, which is a pain as I had my theory as to who the human cylon was all planned out. (Tragic isn’t it) Thought it was particularly decent of the Hubby to take a photo of me hanging half off the sofa, wrapped in the little fellas Spider-man blanket, complete with half eaten cornetto in hand. I tell you if I ever need sectioning they have “All” the photographic evidence they need!

Educational Psychologist was fun, in a completely non fun kind of way. Very nice lady, keen to help and very astute, compassionate, all round good egg really. But its yet another occasion when you have to regurgitate the information regarding your child, and all his little eccentricities. (lets call them that for now, it requires less use of the Valium..) It always makes me cry whenever we have to start from the beginning though, which seems to be something you spend a lot of time doing with this particular “illness”. With hindsight (oh if only!!) when I was considering investing in the Marlborough Estate Savuignon, I should also have looked into getting shares in Keelenx.

Its hard to tell what is basically a perfect stranger that you have a little oddball, and some of the stuff that goes on in our life is private, I don’t want to share it. (I realise the irony of that statement given that I’m blogging about it) Its not because I don’t to fully disclose the info, I mean that would be no help to anyone, but its hard to keep it together. When the emotion starts to take over I like to think calm thoughts, and deep breath, to enable myself to speak without breaking down all the time…… or not, I find thinking about people on my kill list works just as well……

It went well though, its another step towards the final goal (still figuring out quite what that is), and although I have doubts that the school will be as much use and help as required, I will at least attempt to be “on board” with them, up to a point. In my defence, before any Teachers out there take offence, I have tried to “play ball for the last 18 months. My son has been fortunate at times to have had wonderful, insightful, caring teachers, and at other times, those that really do not appear to be interested.  This is where my, “don’t get in my way!” attitude comes into play. Its a bit like Beyonce and her, “I am Sasha Fierce” persona, only less glamorous, and talented, and nowhere near as thin, and without the really big hair and thighs of steel. So actually a pretty rubbish metaphor, but im hoping the point is made.

On other matters I went shopping today with my Mother. (I would like to point out at this juncture that I do have other friends, its just that I really get on with my mum, and nobody else I know gets hysterical in changing rooms quite like she does, its so tempting to push her out mid “one leg in trouser and one leg out”, for the rest of the shop to enjoy the hilarity). We got caught in traffic on the way home and she managed to have a drink from a bottle of fizzy water, she then proceeded to get the giggles and then snort it down her nose, into her £200 handbag and then dissolve into hysterics. Bloke in front thought we were glue sniffers the amount of bubbles and peals of hysterical laughter coming from the car.

But back to my “attitude issues”. I don’t think I have an attitude “issue”,  I think I have an attitude. Two different things. He’s my child, end of. That’s where it starts and ends, nothing is too much trouble and nothing is too much work to see him succeed, and by this I don’t mean develop time travel, or become a brain surgeon, just to be happy,  content, and fulfilled.  Although Brain Surgery would be good because im fairly sure it pays well, Time Travel might be a leap, but we shall see!

On an entirely separate note the strain of yesterday seems to have messed with my brain, I had a really vivid dream last night that I had become a drugs mule….. This is laughable for so many reasons, and if you knew me well you would know that I am a) a shit liar, b) panic if I’ve taken two ibuprofen and have to go through customs at the airport, and c) would probably just take all the drugs myself. So as career choices go its not really a major option. Quite why my frazzled brain felt the need to get this creative is beyond me. But I’m not sure the Hubby was too impressed when I sat up in bed at 3am screaming “get that rubber glove away from me!”.

Speaking of the Hubby, hes a snorer, and I have zero tolerance as we all know. I have taken to stabbing him with a pair of tweezers when its really bad, and then when he shoots up from his peaceful, but noisy slumber, with a look of outrage on his face, I just just calmly say “honestly those cats are really malicious at times!” So far the plan works well, and as he has neither Facebook, nor reads my blog (divorce!!) I think I’m safe for a fair while longer.

But back to the roller-coaster that is the Autism Spectrum, hmm, well its  been another week of learning new things, and realising that the red tape is still very much in play. Which I understand on some levels, but on others could do without. Next stop is back to peadiatrician and a possible referral to CAMHS. I shall be referring myself to the nearest bottle of vino.

In other news one of my friends announced the other day she has found her first grey hair “down there!” It’s moments like this that make life worth living,  and really useful blackmail material should she ever piss me off:)

Autism – its cool! and why I should have read the Karma Sutra properly..

They say that Autism is becoming more “popular”. I think by that what they mean is its becoming more prevalent, which is hardly the same thing… I do think like many illnesses/diseases etc, Autism is better understood, so therefore more people are diagnosed, but sitting where I do, I’m not sure any of us think its “cool” to have Autism, personally I think being a 6 foot blonde supermodel is cool, but that’s just me. As in that’s my opinion, not that I am, “actually”, a 6 foot blonde supermodel. Which is a shame as I reckon I could rock that look!

Autism is a lifelong disorder, that brings with it many hurdles and obstacles. My little box of Frogs has Aspergers Syndrome which means that although he is extremely articulate, has exceptional understanding of language, not least the fact he fluently understands two different ones, as Daddy is Dutch. However he also misses a lot of social cues, can be extremely rigid in his behavior, and finds going into a small village cafe for a milk-shake a scary experience. We did just this last weekend, and after initially backing away from the cafe door, with encouragement and both his arms around mine, we walked in, found a very quiet seat in the corner, and relaxed, sort of. OK not really.

Boys are far more likely to be on the spectrum than girls, which means I should have paid far more attention to that Cosmo article that said you should “do it” in position 108 from the Karma Sutra if you want to conceive a girl……

There are definite genetic links to Autism Spectrum Disorders, but they now believe there could be environmental ones as well, although Research has “not yet identified a direct causal link between any environmental factor and autism (including vaccinations), although risk for developing autism has been associated with factors such as parental age” (autistica.org.uk) Which did give me food for thought one night when half way through a bottle of Sauvignon (which is enough, never say I’m anything other than a cheap date), I decided it was  “all my fault” for waiting until I was 34 to get “with child”.

One of my biggest fears for my little fella is based on a statistics, (and we all know what they say about statistics!) Research by the National Autistic Society has found that 90% of parents with children with Aspergers Syndrome  have been the target of bullying in the last year. Now this horrifies me, but I have a plan should it ever happen. Obviously I cant tell you what it is as its deeply illegal and would require the entire family to emigrate to Nova Scotia, but I like to think all that fresh air would do us good. I have a feral like desire to protect my child, like any mother, but my aggression levels sky rocket when I think about my child being bullied. I hope it never happens, and we have always taught the little fella to stand up for himself, plus he is twice the height of any of his peers (thank goodness for his Dads Dutch genes, they are all huge,6 foot plus chaps, probably explains the prevalence of Dutch porn stars……). He also has a lot of friends, and seems popular, if somewhat on the periphery of things. But then even when he was very young and at nursery we were always told, “he seems very happy, but he doesn’t have any special friends” .

I didn’t have any special friends when I was young either, well only the dwarf who lived in the wall……insert insane eerie cackle here (its scary because its truuuuuu!). But that was more to do with the fact I was a Military Brat and we moved around a lot.

Autism has no respect for race/colour/class/ or how much money you have, if it wants you it gets you. Which makes it sound like a dark and desperate condition, which I suppose it is. But I’de like to think there are pluses to being “special”. I know my son is many things which are difficult to manage, but he also offers a level of warmth and affection to a very few chosen individuals that is so intense that it makes you feel blessed.

We have the educational psychologist in today, as although the little fella has been diagnosed by a Consultant Pediatrician, a Consultant Child Psychologist, and a Speech and Language Therapist, in order for us to request a “Statement of Special Educational Needs”, often referred  to as a Statement, as its less of a mouthful! We do need the Local Education Authority Educational Psychologist to agree, that way we can apply for the Statement and hopefully get some more help in School, plus get Autism Outreach in, and if all that fails, apply for Special Provision (which is something I will come on to later, as if like me you have the tolerance of a small simple goldfish for this much red tape, you will have already got bored and logged off!)

Consequently I woke today feeling sick as a dog and wanting to get on that plane to Mexico again. We have report after report stating what is wrong with Charlie Banana, but today matters, end of. I have been told repeatedly by those in the know that its nothing to worry about, but I’m pretty sure they told Jennifer Aniston that when Angelina said a polite Good Morning to Brad, and look what happened there!! So if it’s ok with everyone else I thought I would worry myself sick and then sit in a corner and rock for a bit. Didn’t even do the school run today, although to be fair that was more because I come out in hives when im really nervous, and I have a “blob” the size of an Ostrich Egg on my left eyebrow, didn’t want to hear screams of “Burn the Witch!” when I walked into the playground. So Hubby has taken him in instead.

So kick off is 11:30 for us, the Ed Psych will be seeing our little rubix cube at 9am and we will go in afterwards, until then I shall feel ill, panic, eat vast quantities of chocolate, and pace around the kitchen, bet the Hubby cant wait to get back!!

Will let you know later how it went, and how I am going to explain to the neighbours why I was stood in the study this morning, wearing just a towel and with my bra on my head….