Brick walls

Thoughts are powerful.

If you think about something often it might happen.

If you think about someone they might appear in a dream.

If your thinking assumes a specific mindset then its hard to adapt that mindset.

But thoughts are not facts.

Thoughts can be fluid.

This week I got to cross off another fear on my list. The broken limb fear experienced back in May was just about dulling in my sub-conscious and even though it was every bit as stressful as I had imagined and I do not want a repeat any time soon…

we got through it.

This time the fear was smaller but no less petrifying. Nits. Nits and a PDA-er who routinely refuses to brush, wash and dry her hair. It was stressful and time-consuming and never-ending at times but…

we got through it.

A strange thing happens when you manage to overcome a fear. Your resilience is bolstered and after the initial low can give way to feelings of euphoria and invincibility. When you suffer enough setbacks, fear tends to lose some of its shock value and instead of crumbling each time you find yourself just dealing with it. A place you never thought you’d get to.

I have lived most of my adult years in fear of the ‘what ifs’ whilst simultaneously indulging, obsessing and inviting them into my thoughts each and every day. If the time I have spent worrying about broken arms and nits over the last five years had been condensed down into a drama series it would include at least six hour long episodes (no adverts).

Nits came and went (fingers crossed) and took up a 36 hour period.

Then life moved on.

For me, SEN parents and a lot of our children with ASD and anxiety it is the all consuming fear of the ‘what if’ and the ‘unknown’ that causes so many problems.

I’m in my 30’s and can honestly say that until L was diagnosed, and I started to try to unpick some of her behaviours and worries which then instigated some of my own thought analysis, I didn’t realise the extent to which I struggled with the whats ifs and not knowing. I just thought that everyone worried a lot, like everyone has a mobile phone and likes Pringles.

 

I’m still trying to get my head around why I think the way I do and consciously choose behaviours which help instead of hinder but yet I still have the audacity at times to feel frustrated with L at just five years old when she can’t ‘deal’ with her own worries. If I’m being completely honest with myself my attitude and behaviours do impact on L. The moment my stress levels start to climb, her behaviours start to deteriorate. Sleep is more disrupted. Reassurance is needed in greater amounts.

L is a work in progress and although I know that I have the experience to help her in the future should she have some of the same problems I have had she may not want my help. Hopefully she may not need it. So I’ve come to the conclusion that in order for L to be able to cope with the hand she’s been dealt and for me to take control of my depression I really need to sort myself out first. I’m her biggest role model and corner-stone and so far when times get tough I model;

STRESS – Snapping, head in hands, ferocious displacement cleaning

PANIC – ‘I can’t cope!!’ ‘I can’t do it;

ANXIETY – taking 2 hours to get to sleep worrying about the ‘what ifs’

COPING MECHANISIMS – Sleeping, alcohol and unhealthy food.

Not a great model. Has it got me very far? No, not really. It enables me to keep functioning but functioning isn’t the same as living.

Clearly if you are predisposed to negativity and anxiety it takes a long time for change to set in and healthier habits to be adopted. But…

I know alcohol makes my anxiety worse.

I know hiding at home and crawling into bed just prolongs the anxiety.

I know that taking care of myself, exercising and eating well improves my mood.

However, left to my own devices I have the bottle of wine, I lie in the bed and I eat the Hula Hoops. I’m referring to longer term depression and anxiety in adults here not short one or two off episodes. The type of depression which hangs around like an old coat at the back of the cupboard which may be required one day but could also do with disappearing from your life completely.

How many times do you keep hitting the brick wall before you decide to change your approach to it?

The adage ‘If you do what you’ve always done you get what you’ve always got’ echoes through my mind over the weeks. It might be enough to motivate me to ‘start a healthy week’ on a Monday, or not drink until the weekend but as soon as the what ifs and a faint trace of drama shimmers on the horizon the emotional crutches are well and truly out out.

If you are lucky enough to actually get Mental Health support via the NHS, talking therapies or a local charity it is usually beneficial however you cannot lean or rely on these services. They aren’t about at 3am when you are having a panic attack over whether you will make it to work in the morning. They are short-term solutions to help ground and redirect you.

Essentially YOU are responsible. They can give you tools and suggestions but there has to be a concerted effort on your part to facilitate the change.

Weigh up what is worth putting more effort into. Buying new super springy trainers to help you run harder into the brick wall or do a bit of background work and find another way round? I do love buying a new piece of gym kit for it to stay safely un-creased and sweat free in my bottom drawer.

Things to help me.

Being Honest with myself

Am I happy with how things sit with me at present? Are my moods impacting on the family? Is part of the problem the way I deal with things? This isn’t an opportunity to blame its an opportunity to help improve things mentally and emotionally which will then impact positively on the rest of the family and your mindset.

Being kinder to myself.

If like me your internal voice talks to you like a condescending, mean and sarcastic bitch. Get a new one. I’ve read many self-help books and they consistently feature this idea of self-love, talking to yourself like you would a friend or being more compassionate. I’m extremely guilty of walking around whilst mentally assaulting myself. Self love seems so cheesy and pretentious but replacing 15 years of ‘get up you useless, lazy waster’ with ‘ok, now we’ve had a nice rest haven’t we?, let’s get up slowly, take a few deep breaths and focus on one thing at a time’ is infinitely better for your long-term self-esteem.

Acceptance.

No, these things don’t just happen to you. They happen to everyone but because you are only you, you only get to see them close up happening to you. The universe doesn’t have time to pick and choose who ‘these things’ happen to it is random so don’t waste time playing the ‘poor me’ card. It doesn’t get you anywhere faster or make you feel any better.

Why can she/he do it?

Why can she do it when I cant? Her life must be easier than mine, she must be richer or have people helping her. Although it seems ridiculous to say, being anxious or depressed is sometimes easier than changing negative behaviours. It can become part of your personal narrative and you become type cast as ‘the depressed one’. Negative behaviours take a lot of time and effort to re-work. If you continue to follow the path of least resistance then you will remain on that path. She can do it because she worked hard to get off that path and found a different one.

I recently got into a massive downer about how ‘I’m obviously not good at having children’ ‘was doomed to have problems in my pregnancy’ ‘had a hard time when my baby was born’. The catalyst of this was reading a handful of magazines on a Saturday evening which was ironically supposed to make me feel better and seeing an interview with Sophie Ellis Bextor explaining how she is having her 5th child next year. Fifth! I skimmed over the article and just used it as ammo to fuel my ‘you’re no good’ fire. Plus she looked gorgeous. Urghhhh.

I probably returned to that conversation with myself ten times over the course of the next day until part of me wanted to know the names of her children admittedly for reasons of ridicule to make myself feel better and googled her. I then uncovered the fact that her two first-born sons had actually been very premature and she was now involved in a campaign with Pampers to provide preemie nappies for hospitals and supermarkets. I completely changed my mindset about her and could see that it wasn’t ‘just me’ who had these problems, other people experienced them too. I keep reminding myself to look outside my self when I’m on a negative self talk trajectory because you can’t judge a book by its cover so to speak.

A lot of celebrities have depression and anxiety -why? when they have everything they could possibly want? Because mental health conditions affect everyone, because mental and emotional health are caused by a number of contributing factors and no-one is immune. Prince Harry, Ruby Wax or Stephen Fry have access to all forms of treatment with no monetary or time constraints but they still suffer. To the outside world their lives couldn’t look any better but long-term depression and anxiety exert a strong grip and although 50% of tackling the problem is the support and the services the other 50% is the individuals personal struggle to make sense and navigate around it. It has to come from the person – maybe more so. Sadly people do succumb to depression and the recent examples of Robin Williams, Gary Speed and Dolores O’Riordan show that it can be hidden from view yet very much impossible to live with in extreme cases.

Exercise

When it comes to exercise I am particularly demand avoidant. Lots of people are but I know that this is the key to helping me move round the brick wall. However I have a great card to play, the ‘I’m too busy/stressed/bogged down in autism’ card which validates my no exercise situation. But I’m not really being honest with myself here. I do have some time. I have scrolling through social media time, I have reading books time, I have watching Lorraine and Homes under the Hammer time. So what I’m saying really is that I don’t think exercise is important enough… to make time for. But I know deep down that I don’t feel that way. I would very much like to exercise. My excuses are starting to look a bit cheap and flimsy now.

Alcohol  

Some people can drink and the benefits outweigh the negatives. Mine don’t unfortunately. This is another key to getting round the brick wall. Like the exercise excuses I use alcohol as a treat to validate ‘tough days’, everyone does it. Its quite a big thing in this country. I’ve spent twenty years ‘doing it’ its been so successful that’s why I need to carry on. But has it? No, it hasn’t. The time wasted due to epic hangovers and anxiety from alcohol must surely be measured in years by now?! Alcohol is a good temporary fix but to get over the wall perhaps it needs to be replaced with something else? Or at the very least reduced.

The procrastinator within keeps goading me to wait until 1st January to start using these keys because its a nice starting date, its fresh, it’s what everyone else does. But change doesn’t have to attach itself to a date or a day to be significant it just needs to start and now. Everyone else isn’t me and frankly I don’t care about everyone else anymore.

I know this has been a bit of a self-indulgent post but I’ve really been thinking hard lately about the future. Do I want to be this person in another 5 years, another 10 or do I want to go around the brick wall and start living. There is time to grieve for what didn’t quite measure up to expectation and there is time to be angry and time to be sad but if I’m going to keep going I really need to start being braver. Being scared isn’t the same thing as being unable to do it.

Basically, I don’t want to waste anymore time being HERE.

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Egg on Toast

Today’s Technical Challenge has been set by my daughter. It originated in 2015 when she witnessed eggs being boiled in a pan for a potato salad and her curiosity was piqued. Over time the recipe has evolved to include toast.

The winner of the challenge is the baker with the least food waste at the end of their attempt. This will be weighed for judging purposes.

Egg on Toast

Put two extra large eggs into a pan of water to hard boil.

Whilst the eggs are cooking the toast will need to be made and served as the recipient cannot wait and is hungry NOW.

Select two slices from the middle of the provided loaf of Warburtons Medium Sliced White.

Assess for any dimples, creases, holes, markings or discoloured crumb residue and remove or discard and re-select if necessary.

Put both slices into the toaster and turn each slice 180 degrees after the first ping.

Continue to check, ping and turn 180 degrees until the slice has a minimum coating of 50% black/treacle brown across the entirety of its surface area.

Remove slices and show to recipient who will select the best attempt. Discard the remaining slice.

Quickly remove all crusts with a sharp knife to enable a clean cut.

Butter the slice evenly and offer immediately to the recipient remembering to show both sides so blackness can be assessed and appreciated.

Whilst recipient is eating, remove boiled eggs from the heat and tip the boiling water away.

Egg 1 needs to be prepped, ready and piping hot in a seamless transition to the recipient once the toast has been deemed finished.

Egg prep involves peeling the egg whilst still piping hot, removing any traces of shell and skin completely.

The egg must be placed in a Disney Princess bowl and presented with mood appropriate cutlery.

Allow the recipient the option to slice the first mouthful of egg but this should not be communicated orally.

The egg white is acceptable but no yolk should be present in any potential mouthfuls, hence the large size of the egg to maximise white.

If you fail to deliver each mouthful at the prescribed time then the egg may need reheating or discarding.

If Egg 1 is successful Egg 2 may be considered but may need reheating if not at the correct temperature.

Do not converse with the recipient during the challenge unless spoken to first.

Do not expect table manners or traditional seating arrangements whilst the challenge is taking place.

Do not expect thanks.

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Walking to School

I learnt an important lesson yesterday.

Walking to School safely is still not an option for us.

I had always hoped that I could walk my child to school as I believe that it is an important right of passage. This belief was rooted in the fact that I walked to both my primary and secondary schools and although as I got older I would beg for a lift if my dad was around because I couldn’t be bothered to walk the 10 minute journey I firmly believe that the walk to school benefited my social, emotional and physical development.
The walk signaled the transition from home to school and allowed a head space to mentally prepare for the day or analyse the day gone by. The rhythmic pounding of my feet was comforting to my mind and nature helped to distract from negative thoughts. During the storms of 1987 I battled fallen trees, on snow days I moon walked home early feeling like Captain Scott. I got soaked through to my knickers in torrential downpours and rushed red cheeked into the house gasping for a drink on hot July afternoons.

The routine of walking the same way each day allows for a number of important sensory experiences to wash over you, although seemingly unnoticed at the time. When you are in a car the majority of these are lost and it becomes clinical. The seasons changing, light to dark mornings, earthen fresh spring rains to crisp cobwebby winter suns. People and buildings become reference points in collegial recognition. If the man isn’t at the bus stop today you wonder why.

I know times have changed and a quick estimate of parents at school yesterday would suggest that well under half walk their children to school. The majority drive (of which I am one) and the rest are presumably already at breakfast club so were probably driven too. More parents are working or live further away to make the logistics of walking impossible but it is a real shame.

We didn’t get our nearest school but one 3/4 of a mile away and I hoped as time went on that we might be able to walk. However as mornings are tricky literally every second counts and the car was a great way to buy extra time. The ability to strap L in and central lock the doors helped to prevent Houdini moments and if a tablet was taken with us the transition would sometimes be less obvious. Post school the car could safely contain a meltdown and allow the opportunity to drive to a park or shop if excess energy needed to be released.

As I drove L to school each day I would be internally grateful to have a car but also feel sad that we couldn’t walk as along with all the benefits above it is a great way to get out anxiety and frustration. Last summer I tried to collect L from school a few times as the weather was so beautiful. I tried a few approaches. Always bringing a snack sometimes her scooter and always with a pre-agreed plan of action for the rest of the afternoon. With very few exceptions each attempt was a disaster. Scooter thrown at me, in the road, bolting away, kicking, running towards or into the road or demanding to be picked up. L has two styles of walking, me picking her up and carrying her or running, with me running to keep up and prevent her running into/too close to the road or through peoples front gardens. There is also way too many distractions from the autumn leaves which need a good kicking and throwing to the shiny piece of rubbish on the floor to the bathroom suite sat outside a block of flats whilst a new one was being installed ‘a toilet in the path!!’ and her attempts to try and sit on it.

Yesterday my car died and I was forced to walk her to school. I have never attempted a walk TO school as there is a deadline involved. Walking home we can take as long as we want and it has been known to take well over an hour to walk the 10 minute journey! This was a lot of pressure. There was a lot of carrying, sweating, running and negotiating on Ls part right up to the door. ‘No school?’ she kept re-iterating as we signed the late book. But we made it. The journey back was equally stressful and included a trip to the shops to buy something I had promised as a bribe in order to get her to go to school and three incidences of running into roads. Her road safety is non existent. She will race ahead and as she gets closer to the road and my stress levels rise she will laugh and try and run faster. If I call for her to stop she will find it funny or a game and start to dodge me and if I attempt to grab her she will fall to the ground or hit out. Unfortunately her school is by a very busy road and my own anxieties about her running into it are sky high. I often get to school early to park as close to the school gate as possible so we don’t have to go out the school grounds but this isn’t always possible.

I’m not sure how long it will take for L to become more road aware and if like me she will ever be able to walk to school on her own, only time will tell. But for me this is one area were I feel sad that she might not get to experience the benefits that I had doing something most of us take for granted.

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Ruby Chews-day

Autism and fine dining go together like…well chalk and cheese really.

Each individual will have a relationship with food which covers a spectrum of possibilities. From over eating to under eating, strict rituals, lowered or heightened hunger and thirst signals to sensory needs such as chewy foods, non foods, hot, cold or restriction and avoidance.

Food has been one of our most challenging areas and aside from time, zero pressure and oodles of patience nothing has improved it really. But we are definitely moving, however slowly, in the right direction.

Something that most families take for granted without a second thought going for a meal out – has been very tricky to navigate .

In the naive early years and now from fear of completely alienating all friends and family, occasionally we have to try to attend a meal out AS A FAMILY. This has resulted in varying degrees of success.

The restaurant is a public arena for people to observe and judge and is divided very clearly into two camps, the ‘good’ parents whose children are eating well and behaving nicely and the ‘bad’ parents’ where the children are not eating and behaving in an unacceptable way. There is nothing more soul destroying than being judged as a bad parent because your child is unable to conform to the norm through no fault of their own.

Meals in the past have usually involved tag team parenting where one eats whilst the other entertains or in worst case scenarios sits with L in the car with the tablet whilst the other stays in the restaurant. No, it isn’t very relaxing or much fun but sometimes these things have to be done. I’m sure lots of people have thought we are too soft, stupid or lenient in the past and I have found myself feeling guilty or embarrassed but I don’t care anymore! Because it is what works for us.

However, layered onto the meal out is the ‘experience’. Culturally, in the last twenty to thirty years we are eating out more often as it is cheaper and more available with the proliferation of pub and restaurant chains such as Ember Inns and Pizza Express for example. Meals out can be celebratory, time-saving or a regular treat. Restaurants are family friendly and the majority accessible for all. But herein lies the first problem for Autism families. People.

If someone finds socialising awkward or boring there isn’t much of a draw to going out of the home for a meal. Eating is seen as a transaction of necessity and ‘the experience’ is redundant.

Lingering over a plate of dough balls and a fizzy drink whilst chatting about the weekend is as alien as flying hedgehogs. Add to this the second problem. The environment. The different smells, colours, lights and sounds. From the baby crying at the next table (ALWAYS the next table!!) to the strong fried fishy smell wafting out of the kitchen to the scary stag head nailed to the wall. It’s hard to have it pitched just right.

This is all before even starting to consider the third problem, the food itself. With the exception of fast food chains like McDonald’s or KFC (God bless them!) where food and restaurants are standardised across the Globe, food in restaurants can vary considerably. If the menu has an image of the meal on it and then appears different in real life there may be confusion. If the chef is a bit too generous with the salt it can taste different to how it did last time. If it is too hot or too much is put on the plate it can be wrong. There are too many factors which cannot be controlled.

So aside from mandatory events why bother going for a meal?

Curiosity.
When I get to have a rare time out I usually go for a food based activity. Coffee and cake. Shopping and lunch. A meal and drinks. L sees me slam dunking my jogging bottoms into the laundry bin, getting dressed up and a teeny bit excited and wonders where I’m off to. I would usually reply ‘oh, a meal out with friends it’ll be really boring we’ll be sitting and chatting all night’ and she usually accepts that, yes that does sound really boring. But the last few times she has asked to come too. Every family meal out is exhausting and stressful and usually ends with me thinking never again! But L doesn’t voluntarily ask to do something very often and I only think it is fair to give it another go. So last weekend we promised that if she still wanted to we would go out for a meal together.
We thought we might go for a Sunday roast as there has been some success with this meal over the years and chicken or ‘chick chick’ as she calls it is one of the few meats she will eat. The other being pork in sausages which she thinks is chicken and will refer to as chicken as we do too to keep the pretense up. Oh the lies!!!
So we didn’t even mention the meal as the demand of having something planned and set in stone can be off-putting. We had a lazy morning and decided to go for a drive to a ‘vague’ park, again no concrete plan as it can become an outright refusal. We had a run about in the park hoping to work up an appetite then drove to the restaurant. At this point we casually mentioned going for a meal again which L was up for.
Before even getting out the car one of us did a sweep of the place. The wait was 45 minutes so the operation was aborted. Quickly improvising I said ‘why don’t we go home and play for a bit and then go for a curry in the evening?’ Chick chick curry is Ls favourite meal. We were all in agreement and a tube of Pringles was whipped out from the glove box and popped open in the meantime.
I decided the roast was probably a bad idea anyway as it would have been too busy and far too peopley. If I’m honest Iwanted a roast so I had skimmed over all the potential pitfalls. I have often found that in the past when something went a bit wrong that when I actually got home and broke it down it was mostly my issues causing me to attach more significance to perceived failings than they warranted. We had many failed tries at various toddler groups. But did L actually want to go or did I just think I/we should go? If I removed my wants and needs and considered hers it placed a lot less emphasis on the pressure to do and enjoy things.
Now based on previous experience I decided that we would go to the Indian restaurant we had been to once before for a birthday. She had enjoyed it and eaten a whole starter, not her own unfortunately – the birthday girls but they weren’t too upset! We got there for opening time and it was empty. Perfect. We sat at the table and L delighted in having her menu handed to her and a napkin spread across her lap.
Straightaway L set about personalising her space. The white board and pens came out along with the current favourite plastic guitar toy. The flowers in the middle of the table where removed and replaced with a fuller bunch from another table followed by a second bunch from the table behind for good measure. My water, which had more ice cubes in and was therefore superior to hers was swopped and the soft cushioned booth which we were sat at was tested out for its trampolining properties. We tend to let her play out these scenarios unless they are dangerous or upsetting others and this was the case. Finally, the piece de resistance. Last time we came L was rather taken by the stripy fly curtain which hung across the door way to the toilets. She had already remembered the curtain from before and was itching to have a go. As an avoidance tactic she often asks to go to the toilet when it is busy or she doesn’t like something and will either hide there or tell me what is wrong in privacy. But sometimes she just likes visiting the toilets to see what they are like. I always get a small flutter of delight when the toilets are actually nice and/or clean and/or empty then I don’t begrudge having to be in there so much. She fell in love with the flowery 1970’s door handle and set about opening and closing the door a few times. I repeated the mantra ‘If we touch things in the toilet we wash our hands’ and we had a long hand wash admiring the lovely warm temperature of the water. She then actually needed the toilet so more handle touching and hand washing.
Back at the table L made herself even more at home by kicking off her shoes literally and straddling the booth riding it like a ‘horsey’. Again old me would have been mortified that people were judging my lax parenting and got her down cue tantrum but no one was there to judge aside from the waiting staff so I let her dismount in her own time. Part of me wants to embrace her slightly cookie nature as it is sometimes cute and funny and it clearly makes her happy. I want to preserve her un-self-consciousness for as long as I can as I doubt it will be very long before she can only be herself in private. We ordered and set about waiting for the food. L was starting to get bored now so we did a bit of drawing on the white board and more horsey on the seat until the food came.

Food was shared and eaten really nicely and this was the point that L was probably ready to go but we still had her pudding to come which she was insistent in having so we employed some delay tactics, a bit of role play, a visit to the toilets (again) and although not ideal and goody two shoes me had to square things internally with myself, L used her starter plate and the sauces and salt and pepper to make a concoction. Kids of today are obsessed with slime, potions and gunge I guess like we were obsessed with silly putty and silly string but it drives me CRAZY. Every time you turn your back a slimy gungy mass has appeared in a bowl somewhere. Does it go in the bin? Down the plug hole? Argghhhhhh! However the plate was going to be washed anyway so not something to cause a meltdown over.
When the waiter took away the plates I over apologised for the mess on Ls. If Ls behaviours are bordering on the more extreme I still feel the need to explain quietly to a member of staff that she has autism as some behaviours are not considered acceptable by the larger part of society. It is completely for my own benefit as it stops me feeling awkward and embarrassed and hope that I will learn to care less as hopefully society starts to be more aware and accepting.

Whilst waiting for Ls pudding which was actually taking quite a while now considering it was a penguin which just needed releasing from the freezer she started to run around the restaurant a bit and found a stash of menu’s by the bar. She bought them back to the table and role played some more waitressing then started to get annoyed that her ice-cream wasn’t ready. ‘Wheres my Pengy Quinn!?’ she kept shouting channelling the character from Baby Jake which we haven’t watched for years! Finally the waiter bought a parrot over instead of a penguin and whilst I held my breath waiting for a negative reaction she just accepted the different flavour and started to try to open it. I know full well that if we were at home and the wrong flavour was in the freezer all hell would have broken loose but in the situation she was able to adapt and I inwardly felt so proud.

The ice cream was devoured and we got the bill and thanked everyone on the way out managing to distract L long enough to put the flowers back on the table and reinsert the large wad of menus into the holder.

Success!

We then had lots of energy to burn so played a chasing game for the next 15 minutes on the way to the car.

Overall the experience gave us a huge confidence boost so much so that when this weekend was very wet and dark we had a trip to McDonald’s to get some fresh air. Instead of a drive through we sat in the restaurant and aside from the fixation with the tomato ketchup and BBQ sauce pumps all went well. As L sat alternating one bite of Oreo Mcflurry with a chip I had a proud mum moment to myself.
Tips on eating out.
I do not in any way think that I know what will work best with every child with autism but a few years ago I would literally have taken any crumbs of advice going from someone with any experience so if you think any of these might help or grow an idea to try with your child then that is brilliant! My tips are mostly for younger children as I do not have experience with teens…yet.

I totally believe in the adage fail to prepare, prepare to fail. So I do as much prep work as I can away from the child beforehand. Opening times, directions, parking, visuals, calling ahead to ask for a quiet table or to see if there are lots of large group bookings. This takes away my stress and helps things to run a bit smoother.

Indian, Chinese, Thai, Greek, Turkish restaurants are good places to try as they are fairly quick service and if everything goes completely awry you can ask for the meal to be packaged up and take it home to eat later so you don’t feel that you have wasted money. They also tend to have less younger children as the foods are a bit more exotic and might be seen as less of a safe bet than your standard burger/fish fingers and chips that most chain restaurants do however L has always enjoyed strong spicy flavours so that is a bonus.

Similarly Fast food chains like McDonald’s or KFC Burger King etc are great practice restaurants. So many autistic children and adults love a McDonalds and it is a very inclusive anything goes space. You wont be frowned at for eating with your fingers or wandering about. As they are open all day everyday you can also go when suits you or time it to go when they are quieter or busier whichever you prefer.

Have at least one back up choice, the Roast was a bad idea but the Indian was better.

Take some table friendly activities/familiar toys from home. We take a whiteboard and pens, a card game and a few character toys usually, too many and they just keep falling off the table every five minutes or get lost.

Take a back up drink and food from home in case the food is not right and they then get hangry.

Don’t over order yourself as if you’re anything like me then the temptation is to shovel it in as quickly as possible whilst trying to do everything else then suffering stress indigestion for the rest of the day/night.

Be prepared to be up and down a lot and if possible pick a restaurant with a garden or near to some outside space. Restaurants along busy main roads are a recipe for disaster. Suspend visions of grandeur. This isn’t going to be a relaxing meal out it is a stepping stone to helping your child learn to navigate a new and unfamiliar territory. Help them. Be present for them. Most conflict occurs when trying to adult too much – I’m thinking enjoying a sip of wine, using a mobile phone, having a good chin wag. No – not today sorry!

If going with friends/family pre-warn them that you may not be able to participate in everything. This heads up helps to avoid any upset if they are on board too.

Role play. L likes to watch the waiting staff and then role play being a waitress whilst waiting for our food to arrive. Embrace the role play and keep it going for as long as possible as it is a good time filler and can be used to model good restaurant behaviour without making explicit demands.

Smile. It might be hard but the atmosphere may be tense already so just try to breathe and smile and look like you are enjoying it so hopefully they will see it as something ‘fun’ and be more relaxed if there is a next time. Otherwise they will pick up on your negative, stressed frustrated vibes and feel the same.
If all else fails abort the mission, get a doggy bag and enjoy once they have gone to bed or are otherwise engaged.

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Work Hard, Care Hard

Tiberius. Peggy. Nits. Doctors. Opticians.

I was sat at work a few months ago which was in itself an achievement not lost upon me. Lots of things need to align to make this happen – it is almost scientific.

My work to do list was by my side, my mental to do list flickering in the background, phone, waiting to detonate, propped against my al-desko banana. Work emails were silently flaring in the bottom corner of my screen and each time I glanced at my work phone a nervous spike of adrenaline would fizzle through me.

But.

I want to work.

I NEED to work.

My self validation and pride feel obligated to contribute financially. The notion of being a full-time carer still doesn’t sit quite right. I also need to use my brain as I can testify that when I don’t, I lapse much quicker into a gibbering, nervous idiot. Always the ‘quiet one’ at School I have found that without regular adult company when released into a room full of ‘real live adults’ verbal diarrhoea spews forth like there is no tomorrow.

Before children I was a full timer. There was routine, short, medium and long-term plans and a monetary incentive at the end of each month. After children I tried to resurrect a full-time career but it quickly segued to a four-day week, followed by a three-day week, swiftly replaced by a two-day week. Then followed a resignation and a ‘CV gap’ before a 10 hour week split over two days and a very understanding and supportive boss.

Spoiler alert! I am no longer working as I haven’t figured out how to be a carer, employee and sane collectively. One or two seem achievable but add the third factor and the tower falls down.

So on this particular morning I was sat at my desk looking at my banana and silently berating myself for failing to make lunch yet again…

The sandwiches here are so disgusting and dry why didn’t you organise yourself better – you’re so lazy!

But I didn’t have time!

Well you can’t have a lunch break so you’ll have to buy an expensive dry sandwich – you can’t be seen to be wasting time going to the shops.

<Catches self in reflection of the screen>

God, I look tired! And old! I can’t remember when I didn’t look tired. Maybe my 20’s? I need to make more effort in the mornings with make up! It might help?

Anyway, stop wasting time you’ve made it here. WORK. Attempts to pick up pen. No pen. FFS! EVERYTIME! My pen always goes missing. I hate hot desking! Walks over to stationary cupboard and selects a new pen. Blue or Black? No definitely black. Like the circles under my eyes. Ha ha ha. Sits back down.

Lots of priority 1s and 2s on this list where shall I even start?! Emails. There might be something important.

SHIT!! I need to send an email to X about L the deadline must be soon. Ahhhh I can’t do my personal admin already I’ve only been here 5 minutes!

But its important. If I don’t send it and miss the deadline then L wont get X. Ok, quick, do it quickly!

5 new windows and one reset account later. Done.

Ok where was I?

<Checks phone>

Phew no missed calls from school.

But what if they do call!? It would be typical if they call especially when I’ve actually made it here earlier than normal for once. But what if L breaks something again?

SHIT! I need to make a doctor’s appointment! I keep putting it off. MUST DO IT. Files away in mental to do list. Oh and L needs to go to the opticians. I need to make an appointment for that. After work. I’ll do it after work.

Mentally adds a big red siren alarm to appointments.

Oh Gawwd! That reminds me. I haven’t taken my tablet, quick. Dives under the desk for bag. No water! Ok I’ll just dry swallow it. Nope it’s not co-operating. Gah its stuck. Swallow swallow swallow. Urgh.

Ok where was I?

Finally makes a start on an email. After 4 minutes and 15 seconds lines from Secret Life of Pets start to fight for attention in my mind space. ‘This is my friend Tiberius!’ ‘Some might call him my boyfriend’ Urghhh I’ve been watching too much of that film the last few days. Go away!

Returns to email.

Two ladies nearby start talking loudly about Barbara Windsor and her poor health of late.

‘Oh, its such a shame, she looks so frail’

‘She does’

‘I used to love watching her in East Enders. She ran the pub didn’t she? What was her name?’

‘Oh I don’t know’

‘She was Phil and Grants mum’

‘I don’t remember’

Its Peggy!

‘She was in the Carry On films too do you remember’

‘Oh yes’

‘What was her name though?’

PEGGY! PEGGY FUCKING MITCHELL!

‘Was it Betty?’

‘Oh yeah maybe’

PEGGY!!!!!!

Just leave it! Carry on with your emails. Yes. But I wonder if X has replied yet about L? I’ll just have a quick check.

FFS an email from School. Oh God what now. Nits. NITS!! Please check your child. PLEASE please don’t let L get nits I wont cope. Gah this tablet is giving me indigestion. Gah.

Look Becky sort yourself out. WORK.

Ok, ok il do 20 more minutes and then I’ll get a drink as a reward. Yes. Right.

Tiberius. Peggy. Nits. Doctors. Opticians. 

 

‘Becky?’

My boss. Competent, made up, heels, healthy protein dense lunch safely chilling in the fridge no doubt.

‘Yes’

‘How are you?

‘Fine. Yeah. Fine thanks’

‘Thank you for sorting all those queries. Fab work!’

16

Welcome to the Show!

The Virgin Mary circa 1987.

Demetrius from Shakespeare’s ‘A Midsummer Nights Dream’ circa 1994.

Two very different characters but the sum of my acting experience until Pathological Demand Avoidance (PDA) crossed my path. The PDA Society http://www.pdasociety.org.uk lists the below as one of the key features of PDA;

Being comfortable in role play and pretence, sometimes to an extreme extent and the lines between reality and pretence can become blurred’.

The ease at which role play can be assumed is one aspect which differentiates PDA from a typical presentation of Autism Spectrum Disorder (ASD). In my experience this has translated into becoming the ultimate Impressionist akin to Rory Bremner or Ronni Ancona.

Once a programme is watched and the character(s) are enjoyed and welcomed into our home they must be absorbed into our own characters and acted out through them. However, with Ls attention to detail and desire for everything to be consistent especially during times of anxiety, standards are high.

In one day I can be expected to ‘assume’ Scottish, American (Deep South and Californian), Canadian, Spanish, Irish and Eastern European persona’s. This can range from voicing characters during play sequences, to making requests (aka ‘hidden’ demands via a hypothetical person) to reading a bedtime book. It has been pretty consistent since L was about three years old and characters wax and wane in line with her favourite programmes. If I mix up a Tenderheart Bear accent (Care Bears) with Twilight Sparkle (My Little Pony) all hell can break loose.

I find it hard enough to remember what day it is most of the time let alone which region of American I’m supposed to be in BUT it makes her so happy. A testing ‘I’m plum-tuckered its time for me to hit the hay’ courtesy of Applebloom (My Little Pony) can sometimes be enough to deflect a mood dip and get us upstairs in the evening.

I draw the line at continuing the accents away from the house but I have resorted to quietly speaking in them if tempers/anxieties escalate. People must think I am absolutely nuts but what works works!

Alongside my impressionist skills I also need the ability to mind read as characters can switch instantly for no rhyme or reason and I will be met with a swift ‘Errrrrrrrr! Rarity’s voice’ if I’m in the wrong one. Theory of mind at work again!

When watching TV L may suddenly say ‘that’s Andy’s voice’ meaning the character she is currently watching sounds like Andy from Toy Story and I have to follow her mental thread fast enough to cotton onto what she means and confidently agree that he does. She picks up on insincerity instantly.

If she hears a song she knows, in a shop or in the background of a programme for instance she will immediately say ‘Trolls mummy’ meaning ‘Cant Stop the Feeling’ from Trolls. She is so in tune with her hearing that this sense must be heightened a reported commonality among other people with ASD.

She is effectively controlling our play by having me assume these accents and is very rigid in what she expects me to say and how. If I deviate from her script then she will become annoyed and upset very quickly.

In an attempt to open up her play and communication I am slowly trying to introduce curve balls for her to deal with. This will help her be able to access play with her peers who are not as compliant as me. This could be pretending to use an item which isn’t actually there or having a character say something they wouldn’t normally. It is a slow process and one miss timed comment can result in the whole game being over but I am persevering as in the long run I know it will help.

Challenging stuff or as Grumpy Bear might say <assumes gruff moany American accent> ‘Awww I’m fed up of being me Tenderheart can I be mummy again now?

postshow

Me who? Books

The first days/weeks back at School, especially after a long summer holiday are filled with so many mixed emotions as a parent. For me these encompass the following;

Excitement (a bit of hard-won freedom/alone time)

Decadence (wafting round town solo with a Starbucks and a couple of bulging shopping bags assuming another identity for a few hours – also having a good long dry of my hands in a public toilet with a powerful hand-dryer after checking there are no potentially noise sensitive ears around of course – I’m not that twisted!)

Anxiety (will they be ok? Is this the right decision/place for them? Will I get a phone call today?)

Fear (what if they catch a bug on the first day back? Break their arm again?)

Longstanding Worry (will they make friends, cope, be happy?)

Sadness (I’m actually missing them! the house is too tidy and quiet)

Pressure (I have a massive to-do list to fruit ninja my way through and only a maximum of 5 1/2 hours to do it ALL!! <hyperventilates>)

Indecision (I’m knackered! Do I rest or get on top of the washing basket?)

Guilt with a fino side of negative self talk (I can’t get back in bed and rest it’s just too lazy. But I’m tired! Don’t be so pathetic and ungrateful think of XYZ)

Frenzied Thinking I should be doing,wearing, trying, emulating that (usually fueled by scrolling through the help and hindrance which is social media)

In a nutshell – too many emotions has made writing about the tough stuff tougher this week so to keep me busy from veering from one to the other of all of the above I thought I would continue my ‘Me,who?‘ series.

My second top ten is about ‘Books‘ and because I didn’t write any of them I can’t get all ‘angsty’ over reviewing them.

I adore reading and love how a book can completely engross and transport you. I usually read horror, crime or psychological thrillers with the occasional autobiography or self-help book thrown in to mix up all the death and terror. However, since L received her autism diagnosis two things have changed;

1. I joined a Book group which has expanded my horizons and

2. I have started to read around the subject vociferously both to find out as much as I can but also because it is so interesting! I have chosen these 10 books as I have read them in the last year and they made an impression on me. They are largely about Autism and Mental Health but come from fictional and non fictional backgrounds. Every day a new book or article comes to my attention and I add it to my mental reading list or save the link and hope to return to it but it doesn’t always happen. My rationale is that these beauties made it through and actually got read so they must be worthy!

Understanding Pathological Demand Avoidance Syndrome in Children by Phil Christie, Margaret Duncan, Ruth Fidler and Zara Healy

This is the ultimate ‘go to’ book when first researching or working with a PDA child.

Read this first if you haven’t already!!

It includes lots of experts in the field discussing PDA and providing examples of clinical case studies – a lot of which rung true for me.

Eleanor Oliphant is Completely Fine by Gail Honeyman

This book has consistently topped bestseller lists since its release in 2017. In theory it is ‘just another’ account of a lonely singleton who meets a guy and falls in love.

Blah blah blah. Except it isn’t.

Gail Honeyman builds up the mental and emotional picture of Eleanor so exquisitely that you really get inside her mind and are forced to contemplate societies disconnection with each other. Although history and questionable parenting contribute to her demeanor Eleanor is clearly for me one of the ‘undiagnosed’ ASD women walking around seemingly unnoticed.

I can’t wait to read more by this author.

A Boy made of Blocks by Keith Stuart

I am really interested in accounts of autism parenting from a dads point of view. I have followed James Hunt’s ‘Stories About Autism’ for the last few years and found it to be raw, engaging and uplifting. Sometimes dads take a bit of a back seat as blogs/books/support groups are skewed towards a women’s perspective written mainly by women but I find the male perspective so useful and amusing. Stuart writes honestly in a Nick Hornby/Danny Wallace/Graeme Simsion vein about navigating his relationships with his autistic son Sam and wife Jody. A detailed and tear jerking history of discovering and rediscovering each other.

How Are You Feeling Today? by Molly Potter and Sarah Jennings

I have read quite a few books about emotions and feelings aimed towards young children and found a lot to be too wordy, too outdated, for older children or the pictures frankly terrifying but this book is cheerful, informative and one of the only ones which L actually cast an eye over so I’m hoping there might be scope for a re-read in future.

Emotions are listed at the front with a corresponding page number to refer to where a double page spread is dedicated to explaining it and some options to help circumnavigate that feeling such as ‘I’m bored’ and ‘try and copy a picture from a book that you like’. This genre is really starting to grow so I’m hopeful that more books like this will appear soon.

Stuff that Sucks by Ben Sedley
The Reading Well Programme in association with the NHS and a large number of other organisations is a great initiative. It is mainly publicized in libraries and bookshops and includes books about various medical/health issues which have a little round ‘Books on Prescription’ sticker on them. The adult self-help market is gargantuan but the child/teen market is another growth area and some great books are coming through. I read these with the view ‘would they have helped me as a teenager/would it be something I think L would benefit from when she’s older?’
This book is accessible, quick to read, reassuring and in no way preachy. I found it useful myself and think it would help any teen/young person going through anxiety or mental health issues to feel less alone and scared.

Asperger Syndrome (Autism Spectrum Disorder) and Long-term Relationships By Ashley Stanford
If your partner is diagnosed or has a strong possibility that they are on the spectrum then this book is a godsend. Stanford systematically breaks down the diagnostic criteria and then relates it back to real life situations. A whole lot of empathy can be gained from reading this book and identifying or relating to why? why? why? your partner may do the things they do in a relationship and aren’t just purely being annoying.
I read a lot of posts on support groups were the spouse is resistant to changing their parenting style or personalities in the family stoke up drama. It is very possible that ASD has a genetic component so it is worth investigating all sides of the story and using that information to try to forge new ground in relationships sometimes at breaking point. This book helps to start those conversations.

A Mindfulness Guide For The Frazzled by Ruby Wax
My first experience of Mindfulness was a course back in 2011 and it focused far too much on raisins. Eating one mindfully and tapping into all my senses whilst keeping my feet firmly ‘grounded to the floor’. I left feeling a bit cheated that I’d wasted my time buying into the whole thing and put mindfulness firmly on the back burner. However, after becoming a SEN parent I revisited the subject as things had got desperate! Anything was worth a try to feel better! It was one of the first books I read on mindfulness due to it high ratings (always a draw) and still one of my favourites. Wax guides you through her journey which is in part autobiographical, educational and self-help with some humour, exercises and pictures thrown in. If you’re not sure where to start with reading about Mindfulness this is a really good place.

The Explosive Child by Ross W. Greene

This book explores parenting an inflexible, easily frustrated and explosive child. It is very American but don’t let this put you off as the sentiment behind it all – ‘that children do well if they can’ is worth taking a closer look at. It offers explanations and strategies for dealing with problems and can be very useful if your child has/may have PDA.

Beyond Toddlerdom by Dr Christopher Green

I met a wonderful couple this summer who had a grown up son with ASD. Back in the late 90’s the internet wasn’t an effective means of support, reference books were sparser and society was less willing to be compassionate. She told me about this book referencing it as a ‘life saver’, I managed to happen across a copy of it in a charity shop the next week in a weirdly serendipitous moment and took it home to digest. A lot of it is still hugely relevant and it offers a great snapshot in time for all the parents going through an ASD or most likely no ASD diagnosis back then. It is a broad and informative look at parenting as a whole before Supernanny and the Three Day Nanny existed and I’m sure was fundamental to lots of parents.

Raising Martians – From Crash-Landing to Leaving Home by Joshua Muggleton

In my last job I had the opportunity to attend a lecture given by the author of the above book. A self-professed Aspie he eloquently and humorously delivered his talk to a packed theatre before taking questions. I was so enthralled I ordered the book that evening. We see a lot of books geared towards parenting children but honest accounts of living with ASD as an adult and beyond are fairly sparse. This book is part autobiographical and part instructional to help people with ASD navigate a confusing world and professionals to see another side.
There are so many great books out there but it is really hard to find time to sit and read when you are a parent. I’m extremely grateful that I am able to read two or three books a month now however there was a time not so long ago when it took me 6 months to read one. This week alone I have added about five books and six articles to my Facebook saved pages which I hope to return to – it is crazy! Please don’t give up though because reading is so important! <Stands down from soap box>

books