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!

 

 

 

 

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:)