How do you make it work with children with autism in the family?

I am often surprised by how differently other people live their lives. They can do some really nifty things that are totally alien to us. I'm not criticising or complaining - I am just genuinely in awe of the differences when I notice them. By "other people" I mean families who don't have autism as an ingredient. Neurotypical families. Of course I know that there really is no "normal" - life's rich tapestry and all that - but I am increasingly less aware of our differences unless I really think about them.

Here are a few of those things:

People can "pop" to the shops with their children without giving written notice.

People can attend parties and gatherings and their children merrily fit in with other children and look after themselves at these occasions.

Their children happily eat things that come from the earth or the tree.

Their children do after school clubs or go to childminders without it causing a nuclear explosion at home later.

Their children occupy themselves.

These families can go for a walk on a beach and actually keep on walking without stopping to examine every grain of sand or to fill their wellies with sea water!

These families can do a fun leisure activity that everyone in the family enjoys at the same time - together - all of them...

The list could go on and on. The fact of the matter is that these things seem like little miracles to me. I have no idea what "normal" is these days and, although there is no real "normal" there are a lot of societal expectations of children that are mostly do-able by "normal families": your child will ride a bike, have/attend and enjoy birthday parties, keep his clothes on in public, not make a "scene" after the age of 6?, play football, like going on playdates etc etc

And here's the thing: when you have one/two/three?? etc people on the Autistic Spectrum in your family, it is helpful to learn, pretty early on, that if you aspire to this type of "normal" then you will have a whole truck-load of unfulfilled expectations to bite you on the bum!

A wise woman recently said to me "Don't compare yourself or your family to something that is totally unachievable". This small nugget is possibly one of the most helpful things anyone has ever said to me and I realised that most of the times that I've felt desperate and heartbroken about my children's autism, I had been comparing my family to something that we can't be. That's not to say that we can't be amazing in our own way - my boys totally rock and I love them for exactly who they are. We are just never going to be a Neurotypical family.

In answer to the title of this post, I think that learning to discount the "normal" is the first and most important part of making life work for families with children with autism. Of course every family is different. Every autism family is different too so it's horses for courses here. I can only tell you about what helps us to make life work because some of it we've learnt the hard way and I wish someone had told me some of this when we started out on this journey.

So here goes:

Do what works for your family. Find your own pace of life - the pace that suits your children and you. As much as it would be lovely to attend all parties/weddings/bbq's/bar mitzvahs/concerts etc, if it's really not going to work for your kids, then find a way to do a little bit of it and avoid the rest. I'm not saying that all things that would be challenging should be avoided totally, but, if spending an entire day at a family wedding is going to be like Dante's Seventh Circle of Hell for all involved, then find a way to do a bite-sized chunk of it with your child/children that will be achievable and enjoyable. The worst mistakes we made early on were pretending that we could manage these things and causing J/G and us excruciating amounts of stress and a whole load of knock-on anxiety to boot.

I do sometimes feel that my little family are in one of those videos where we are operating at normal speed and everyone around us is speeded up. But that's ok because that works for us. I'm not saying that that doesn't scald and hurt sometimes, but the alternative - constantly running to keep up and causing my kids large amounts of stress - is much worse than the occasional (and getting rarer) feeling of being left behind by the world.

The next thing that I think is important is to always follow your gut feeling. There are so many autism experts and so much information and advice - a lot of it conflicting - out there. It can be so confusing. I recently saw a video on YouTube about the "biomedical" approach to "cure" autism. It all makes such perfect sense when you watch something like that. But when we looked into that approach a while back and discovered that we were going to have to part with hundreds of pounds a month and force 20 different food supplements into J, who is not into any unapproved food items passing his lips.... Well... gut feeling says "NO". My gut feeling says a big resounding "YES" to never letting my kids feel like they're "broken"; to concentrating on all the brilliant things that they can do, not the things that they can't do; to never saying never; to reading and learning all the time and staying open to suggestions. My gut feeling said "Bring it on" to filling my house with dogs and cats because they have such a positive effect on all of us (and because we are at home rather a lot - taking it at our own pace, remember!) My gut feeling (yes, it IS a big gut to have all these feelings!) was that money would be wisely spent on Occupational Therapy for J - as long as it is Sensory Integration OT (more in another non-gut-related post). Basically, unless your gut feeling tells you to gorge on gargantuan amounts of chocolate, it is probably correct.

Visuals Visuals Visuals! Autism is a visual thing. Spoken words can be overwhelming at times. We always use visual schedules with J even for the little bits of life that seem obvious. Now that J can read, we do written lists with little sketches to back them up. A Saturday visual might be: Play at home - At 10:30 get ready to go to the Library - Walk to the Library with Mum - Chose a book - Walk home with Mum - Have lunch - Play - At 14:30 take Claude for his walk to B Park - Home for Dinner, Play, Bath, Toilet and Bed. It works for us. More complicated outings have separate, more detailed visuals.

Remember the Importance of Solitude to people on the Autistic Spectrum. Solitude is a great healer. When the proverbial hits the fan, quiet time on their own, doing something that they like, is the biggest restorative. I found this hard to accept, initially. A Mother's instinct is to "fix" and hug and soothe. I now know that solitude needs to come before these other things.

Remember that all behaviours have a root cause. My kids don't wind me up for the good of their health! If J suddenly starts biting himself or me, for example, there's normally a reason. Last time it was a wobbly tooth that he didn't know how to get out.

Look after yourself! OoOh I am bad at this one. But it is so so important. If I am operating on one spluttering cylinder, then I am rubbish at being a mum to my boys. I need time to be me sometimes - loud music and dancing and just being without being needed. Vital. I've also found a brilliant counsellor who I can see whenever I feel the need to "explode". Sometimes, I only need to see her every couple of months. Sometimes, when things are all a bit much, I can see her weekly. I can't begin to tell you how much this helps!

Remember that even if something has always worked before, it can all change at the drop of a hat! It's really good to be prepared for this - it took me by surprise the first time. Things and routines that seem totally set in stone can suddenly become defunct. Something else will always come along though...

Active Acceptance - as opposed to Passive Acceptance. I think that's what mostly what I'm banging on about. By "Active" Acceptance I mean that we are constantly learning more about our boys' autism. Reading, researching, trouble-shooting when things go wrong, tweaking, encouraging, pushing their boundaries. We are looking to the future, but never saying never. Passive acceptance would be using autism as an excuse to shut down and blame everything on the big bad A.

So. How do YOU make it work with children with autism in the family? I'd love to know how everyone else does it. I'm open to ideas and suggestions......By "making it work" I mean "functioning"/"enjoying being a family"/"having a good giggle now and again"etc etc. We're still learning all the time - we most certainly don't get it "right" every day of the week but we're getting closer to finding out what we all like and what we all need to be the Hughes Family and we're doing ok!

Pearls of SENCo wisdom

Last week I had a meeting at G's school with his teacher and the Special Educational Needs Coordinator. Well, I say the SENCo - actually she is also the Deputy Head of the primary school that G attends and she is ALWAYS too busy to talk to parents. She bustled in and out of the room - making like a headless chicken doing very very busy and important things.

G is not statemented. He has Aspergers Syndrome and is at the top end of the spectrum. But he does have Aspergers Syndrome. He's on School Action Plus. Needless to say, the SENCo has been too busy this half term to actually have an IEP meeting with us. So G has soldiered on - mostly fine - but his needs pretty much ignored.

So I'd called the meeting to discuss which areas of G's daily school life could be slightly tweaked to prevent him from coming home totally overloaded by his efforts at school.

The teacher is ok - pretty experienced but, also pretty unaware of how AS can affect children like G who mostly manage to hold themselves together at school. Children like G who are academically very bright.

We chatted about how G HATES sports and PE at school. Most Tuesdays G tells me that he's too unwell to go to school. It's sometimes a real struggle to get him there. There's an external company who do the PE - young Sports jocks who mostly seem to dislike any child that finds it hard to join in with something that they don't fully understand the rules of and everyone's running around and shouting and making too much noise and it's all really unpredictable and aaaagggghhhh find it necessary to either shout at G or let him sit crying on the sidelines. Phew. Poor kid. The only funny thing is that the main shouty jock dude has a name that sounds like something that rhymes with beenis....! Not really that funny but G struggles to find the silver lining in "PE Hell", as he calls it.

I asked whether there might be someone to support G and anyone else that finds PE hard - someone to HELP THEM TO JOIN IN not to sit it out feeling like failures. 

We never really got to the punch line because in bustled the SENCo to give me her undivided for 3 minutes! I'm going to cut to the chase here - we discussed other stuff but we got to talking about the secondary school that we're applying for for next September. And here's what the SENCO!!!! said:

"I'm going to give you some advice, Mrs Hughes (whoop whoop let me take note of these pearls of wisdom, thought I). If I were you (hushed tones used here, bit of a drum roll...) I wouldn't mention that G has Aspergers on his application form - it would label him, lump him in with those children with actual Special Needs...."(Did I actually just hear that correctly, thought I).

Oh.

My.

God. 

I've suspected that they thought I was a hysterical, trendy-label-demanding mum who couldn't leave her child alone. And they, clearly, do! I said this to her:

"G has AS. He IS labelled with that by his very neurological makeup. We never want this to be an excuse but it IS a very real reason why he finds some things hard. What we want for him is understanding. Acceptance. Recognition of his great skills. Not to be treated totally differently but supported to achieve the same things he'd achieve if he had a normally wired brain."

What I actually should have said is unprintable.

International Cuddle Day - October 7th 2012

Today J declared that it is International Cuddle Day. So International Cuddle Day 2012 it is! That boy can give and receive the tightest, snuggliest, squeeziest, most delicious cuddles on earth. Never let it be said that ALL children with autism are cut off and remote. They are all different and amazing in their own unique ways.

This is a photo of J today, smiling up at me as he gave me yet another cuddle. I love this picture. It captures a piece of my heart. As I took it, J said, "I love you, Mum". 

Happy International Cuddle Day!

A Few Things It's Best Not to Say to Parents of Children With Autism

Nobody's perfect. Especially me. We all say things that can be misinterpreted by others at times - stuff that we don't really mean or haven't fully thought through. Things that are well-meant but that can inadvertently make the recipient feel awful. Some people have a need to fill in the gaps - say fluffy stuff to keep the conversation going - or to try to "fix" the other person and make them feel better. A very titchy minority of people are just plain nasty. We're all guilty, now and again, of listening to others with our own agendas playing at full blast over what they're saying. Some people just think that the less said, the better!

Social interactions are full of nuances and expressions and body language. X says "blah" and Y responds with "blah diddy blah" but if the correct intonation or body language isn't employed than we can all get into a terrible pickle.

I'm sure that most things that people have said to me or any other parent on the subject of  our children with autism have been pretty well-meant. On the whole, people want to understand, to listen and to share in our highs or empathise with our lows. But there are some things that people say that, however they are meant, just get me where it hurts. I knew very little about autism before I met my children. Generally people are slightly better informed these days but, unless you live with someone with autism, there are just some things that should fall into the "Approach with Caution" category. I would, however, hate to think that people are walking on eggshells when talking to me about my boys so I've made a little list of the things that are better not to mention when talking to a parent of a child with autism. And I've thrown in a couple of do's too because nobody likes a whinger!

You look tired
Not particularly helpful but thanks for noticing. Yes I am tired. I'm knackered. And so would you be if your child was awake half the night and then you were constantly on red alert, never able, for safety reasons, to just leave your child to his own devices.

There are so many children with diagnoses these days - I don't understand why so many people want a label.
You think I got my children labelled for the good of my health? Hmm. Well actually I wanted to get my kids the help they need from as early on as possible to give the chances they deserve.

He looks fine - if you hadn't told me he has autism I'd never have known
Autism is an invisible disability. It's all the bits that you can't see like the extreme anxiety that give it away. But did you not think the flapping and screeching was a little suspect?

Did you give him the MMR - we gave our kids separates
Well done. No I did not give him the MMR.

You are amazing - I couldn't do what you do.
Thanks. But I am not. I am doing what any parent would do which is my best. Of course you could do that if you had to.

He'll get better as he gets older.
Sigh. No. Autism isn't an illness. It won't just go away. Some things will get easier for him. Some things will get harder.

He'll sleep when he's tired/ He'll eat when he's hungry
Both statements are false when talking about autism.  Some people, particularly people who've had their own children, like to put their experience of what their children did onto all children.

Oh yes my child does that too
Yes I'm sure he does but does your child do this this this this this this this and this too?

They're all brilliant at maths
He has splinter skills - some way above the average and some way below. While J does not have any academic delays, autism is still referred to as a Learning Disability. It's all well and good being able to do your 143 times tables but if you can't tolerate sitting in a roomful of people.... Not all children with autism have superpowers.

Have you tried ear defenders/lavender oil/etc
Sigh. Did you really think I hadn't thought of that when J throws himself to the ground screaming every time he hears a siren. And, believe me, I've tried nearly every sleep aid known to man - I would sacrifice lactating porcupines in his bedroom if I thought it would help him.

Wow, I wish.... could read as well as J can
Thanks. I wish J could live comfortably in the world and have friends.

You needn't have worried - he's fine at this party/dinner/gathering
That'll be those hours of preparation and visuals and the fact that Dave and I are tag teaming him constantly while we're here and unable to give anyone else - including our other son - our attention. And then when we're safely back home, the fall-out from all that stress will commence in full.

What's his name?
He's standing right here - ask him!

Our friends did a Gluten and Casein-free diet/Sonrise/Tantric Cat Bouncing/ whatever  - and their child is totally cured.
I'm happy for them but I don't believe autism is cureable. I have tried the diets but my walls looked like the Turner Prize after a week of gobbing and puking. And that toad-therapy course in Kazakhstan is a tad too expensive.

That child needs a good smack.
I hope that you are reborn as a dung beetle.

My son shouldn't be here - it's like a lunatic asylum
Oh. Did you actually mean that my son and all these other children in this ASD specific nursery that your son is attending are lunatics....! (a mother really did actually say that to me!)

We didn't invite G/J to .....'s party (which happened 2 weeks ago and you've already heard about from everyone else) because we knew he wouldn't want to come.
Ouch. I'm sorry that we are party poopers but please invite them if you're inviting the whole class anyway and then let them say no.

And my least favourite:

Autism? Never heard of it.
Do you actually live in the silt at the bottom of a pond?

And now for the Do's. It's not all negative. There are plenty of things that are ok to say to a parent like me. So here are a couple of examples:

Do you want a glass of wine?
Yes

Do you want another glass of wine?
Yes

Another?
Yup

What is this Aspergers thing?

AssBurgers, you say? Assperjers? Hmmm... But what is it exactly? It's something to do with Autism, right? Is it to do with bad parenting? Or perhaps over-parenting? He'll grow out of it, right? He just seems so "normal". Yes, my child does that too - I know exactly what you mean - it's just a boy thing isn't it? But he's so lovely. Soft mothering? Call it what you like, it's just downright rudeness as far as I can see - horrible! I read that Julian Assange has that. But he makes great eye contact. They're all so intelligent, aren't they. Could it be because he doesn't eat enough fruit and veg? Fish oils? Well, if he didn't spend so much time on his computer, he'd be fine. He's fine - I just can't see what you're on about! I read that you can cure it. He must love Lego. Yes, well, poor chap doesn't get much attention - his brother is autistic. How long has he had that for? No it looks like ADHD to me.. or OCD or ODD or BS or WTF.....

Sigh.

Tut.

Picks off nailvarnish for ten minutes.

Let's Wiki it....

Asperger syndrome (AS), also known as Asperger's syndrome or Asperger disorder, is an autism spectrum disorder (ASD) that is characterized by significant difficulties in social interaction, alongside restricted and repetitive patterns of behavior and interests. It differs from other autism spectrum disorders by its relative preservation of linguistic and cognitive development. Although not required for diagnosis, physical clumsiness and atypical use of language are frequently reported.^[1][2]

Meh.

Double Sigh.

I find it really hard to explain what G's Aspergers Syndrome is without either stumbling across a minefield of negative stereotypes, or seeing a slight glazing of disbelief in people's eyes. It's fairly easy to explain the science bit of AS a la Wikipedia above, but it really is tricky to put into a nutshell what that means in every day, real life terms. This is, after all, the ultimate invisible disability. It's not quite as socially acceptable (ha! that needs more explanation but let's run with that for now..) as Autism these days and nowhere near as allowance-making as some more obvious forms of disability.   When Joe Public is faced with someone who looks "normal" but is acting "differently", particularly if that "differently" is a dose of misplaced honesty or a social blunder that seems like rudeness, Joe Public takes it very personally and acts accordingly.

It took years to get a formal diagnosis because looking separately at G's traits under a microscope is no good. For G it's more holistic than that. There's no single behaviour in G that would tell you outright that he has AS. His individual behaviours, traits and responses to life aren't far off those of "neurotypical" kids. Not average but not wandering too far away from the top end of "normal". For every slightly different trait, a (helpful) mother has told me reassuringly that "oh my ---- does that too".Yes, BUT does their ---- also do this, this, this, this, this and this as well...oh and does ---- bite his own arm until it bleeds in assembly and eat plastic bottle tops? Above all, do these behaviours cause ---- an impairment? It's only when you look at the whole picture and spend some time with G in all manner of every day situations - particularly those that aren't of his choosing - that you notice that all is not totally "neurotypical". This would be fine and dandy if my boy was happy. Actually a lot of the time when he isn't engaged in his Special Interest or at least talking about it, he isn't overly comfortable.

So let me tell you about G: he's funny - off-the-wall hilarious; he gets on brilliantly with adults; he's affectionate, energetic, and has an astounding knowledge of all things Nerd and Geek. Adrenaline - seeking. Sweet-toothed and he has the amazing super-power of being able to tell who has been in the house, hours after the event, with his sense of smell! He's honest to a fault - he tries to lie now and again but the truth ALWAYS comes bursting out of him eventually. And he seriously doesn't get the concept of "white lies"! If I'm getting dressed up to go out, I can rely on him to pass or fail one of my outfits in one short brutal sentence. And he's always right!

And some of the trickier bits:

Impulsivity is a constant battle which he wins most of the time at school due to a terror of being told off by teachers. But he comes home utterly exhausted by his efforts. At home it's a different story altogether and he does and has always found it almost impossible to do whatever it is that he's being told NOT to do. This is a classic "yes, all kids do that" scenario. Everybody knows what it feels like to find it hard to resist impulses but, for G and his fellow Aspies, it seems to be almost physically painful to ignore these urges. If you tell G not to do something, he's pretty much guaranteed to do it regardless of the consequence. We now have "Swear Time with Mum" every once in a while. This entails me and G, on our own in the car and I tell him we can have 5 minutes of "swear time" to get it all off his chest (no PC mothering prizes for me then!). Invariably, G's swear repertoire has dried up after 2 minutes and that is enough to scratch that particular itch for the next few weeks! 

From what I've seen in both my boys, control is a theme that straddles the whole autistic spectrum. G's need for control of his world is as strong as J's. It manifests in a slightly different way but is the same animal at the end of the day. One of my favourite stories about the distinction between Aspergers and Autism comes from a mum who took her kids to an Autism Screening at the cinema. She said that all the kids with autism were flapping and stimming; all the kids with Aspergers were screaming at them to shut up and sit down and all the Neurotypical kids were watching the proceedings in amazement! The anxiety that G experiences in every day life is pretty staggering when you look at it as a whole. I recently saw the amazing Dean Beadle talking about his life with Aspergers. He describes the "egg-whisk" effect of stress. This is when worries get so whipped up out of proportion that meltdown is pretty much the only way out. I also like the Tank of Tolerance metaphor when little tiny stresses all add up and add up until the stress overflows in a volcanic manner. G is no stranger to a full, flailing, screaming meltdown when things get too much. It really is a total loss of control. The only real restorative for G when it's all gone Pete Tong is complete solitude.

And then there's the Special Interest. This is no little hobby that can be picked up and put down at will. This is the air that someone like G breathes. This is an obsession. For G this is the history of video games. Name pretty much any game ever made and G can tell you who the developer was and the original year of release. If he was left to his own devices, G would choose to be on his PC for about 18 hours of the day: playing games, researching, watching other people play games. We have timetables and boundaries and very strong rules (no games over a 12 rating) There's so much more to say on this subject - another time, I think. But let me just say that if a child obsessively reads books or plays tennis with the same level of intensity, people will judge those parents very very differently to parents of someone who is gaming-obsessed....!

Another big part of G's make up is his difficulty with Social Interaction. I mentioned that he gets on great with adults. With his own peers it's a different story altogether. His friendships are sudden and intense - best friends forever. G likes to be the one in control in a friendship. It's his way or the highway. Sadly, not many friendships last for long. Kids get bored with the level of G's gaming-obsession and want to play football. G's biggest hatred is football. Sigh. Then there's the mind-blindness; the misreading of situations and body language; the devastation when he thinks that someone else thinks that he's wrong/rubbish; the fear of being attacked by strangers and on and on.

This little list only really skims the surface. There are billions of other bits and pieces - some brilliant strengths and some gratingly unfair difficulties. It's quite complicated living with G at times. It's pretty much black or white with him - there are no grey areas. When he's happy he's delighted but when he's sad he's devastated. He can flick the switch between the two emotions in an eyeblink and then carry on as if the storm never happened.

So this Aspergers of G's.....I hope that has given you even a tiny bit more understanding. Understanding is good. I genuinely wouldn't change him for the world. I love his honesty. I admire (and envy!) his ability to retain information. I adore his affectionate nature. And nobody on this planet has made me get the proper giggles as many times as G has. I blooming love that kid.