Guest post-"Everything starts with an A"

  "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!