Dear Autism Parents: Are You Making Time for You? Well hello there autism parents,

Yes you. Wonderful, superhero YOU!

If you’re anything like me, you might have lost yourself while you’ve been fighting the good fight. So grab a drink and have a read. Hopefully you’ll enjoy this article and it’ll provide some food for thought.

Something I’ve noticed lately is the happiest parents I know are the ones who make time for themselves.

Of course we should always be putting our children first, that goes without saying. However, I’m beginning to realise that the mama’s and papa’s who make time for them, both individually and as a couple, are the happiest overall. Factors such as on hand family support, and a good amount of disposable income also help, but they aren’t essential to engineering me time. 

I must admit that it irks me when celebs tell ordinary folk about the merits of me time. Then go about spouting the usual – go to classes, have a massage, take a long lunch. Clearly they don’t realise that not everyone can afford a gym membership, babysitters fees and weekly trips to fancy restaurants! 

Let’s not beat around the bush. Raising kids is not an easy ride, and when you chuck autism into the mix, it can be grindingly hard.

Every. Single. Day.

Which is why making time for ourselves is so important.

After all, if you can’t look after you, you can’t look after anyone else. It’s why they tell you to put your own oxygen mask on first in the event of an aeroplane crash.

Do you know lots of autism parents getting to do the things that make them happy? Or are they mostly putting out fires, recovering from meltdowns and rushing from one appointment to the next?

I was acing this happiness malarkey for a while

I made time by hook or by crook to write my novel, exercise (at home) and get creative in my kitchen. This little trio of endorphin boosters saw me smile through my tears on a daily basis. Then the roller coaster of life took a downturn, and I’ve done hardly any of these things in the last few months.

autism parentsAnd it shows.

My stress levels are through the roof. I’m snappy with my husband, and if I’m completely honest, I’ve gotten into a negative rut.

That’s when I know I have real problems. When my positivity and perspective disappear. When we’re in a good place mentally, everything else just works so much better doesn’t it? Even on four hours sleep.  

It’s absolutely incredible how much happier I feel when I’m having some me time. I’ve always known it, but have once again become bogged down by my day to day.

So I’m really hoping that writing this will kick me up the backside to start making time for me again.

Here are a few suggestions of how you can claim a bit of time for yourself

First and foremost, figure out what makes you happy. This sounds simple but it’s trickier than you’d think. If what makes you happy involves leaving the house, figure out a solution to make it possible. There is always a way. 

Is there something else bothering you? It’s easy to sweep our own troubles under the carpet when we’re engrossed in looking after our kids. If you have deeper rooted problems, don’t put off addressing them. (You might find this recent blog useful.) There will never be a right time to look your demons in the eye, so do it sooner rather than later.    

autism parentingIf you have a partner, invest in date nights. As I mentioned before, not everyone is able to get out in the traditional sense, but a nice meal at home (or take away) can do the trick just as well. This year my husband and I have made a point of having regular date nights. We’ve not managed to leave the house once, but we switch off from the world which is fabulous in itself. We usually have a steak dinner, few glasses of red, and conversation that doesn’t revolve around the kids. We only manage it every few weeks, but it’s done wonders for our relationship. 

Learn a new skill. Life constantly changes and evolves, and we are required to learn as we go. Cooking is one of my happy makers, but for most it’s yet another thankless parenting task. Is there a way for you to turn this chore into something more enjoyable? One of the things I love most about being in the kitchen without children is the thinking time it allows me. Cooking is just one new skill you could learn, but good old YouTube has tutorials for everything.  

Immortalise it in writing. My husband is a fitness fanatic. He does twice weekly jui-jitsu classes, runs and lifts weights at home. He gets to do plenty of what makes him happy, but he also appreciates how important my well-being is. He wrote this on our calendar last night: “Reneé, SAW” (stare at the wall). Just knowing that he’s taken the initiative to encourage some down time for me makes me happy. Once you write it down it’s impossible to ignore.

autism parentingThe power of fresh air. A good walk on a decent day is soul food. End of.

Above all else, don’t feel guilty for wanting some time for you. If I know nothing else, I know that you truly deserve it! Best of luck making it happen ❤️

mental health pre kids

 

I’ve wanted to write this so many times, but have always been afraid to, just in case it was taken the wrong way and there was a backlash. This fear of others misconstruing my words has led to censorship, which is ridiculous. I can’t call myself a pro-blogger and allow myself to be censored at the same time, so I’ll be taking a big deep breath as I press the publish button.

I’d like to credit Alice who writes at The Filling Glass. After reading her brilliant piece The Chicken and Egg of Positive Parenting, these words started swirling around in my head. So here they are, come what may. 

A story about mental health

There is no beating around the bush here, when I left home and emerged into adulthood at 15, I was seriously fucked up. How could it have been any other way? Although I had a mother who loved me, she was very much reeling from her own miserable upbringing throughout mine, and made a whole load of terrible decisions that negatively impacted (damaged, destroyed, stole…) my childhood.

Lying to me about who my father was; moving so much I went to eight schools where I was often bullied; inviting randy teenage boys into our home who would take advantage of me… The list could go on and on, but this blog would end up being the length of a book.   

I could never have been described as fresh faced and innocent, but I definitely was naive, which led to me making more than a few bad decisions of my own. Especially after drinking, which I did regularly and heavily in those days. All the partying inevitably led to me having very little in the way of respect for myself, and this more than anything else perpetuated the cycle of bad decision making.

In the first decade of me living independently, I attempted suicide, suffered countless bouts of depression and anxiety, and had two full on mental breakdowns.

After the first breakdown I started seeing a counsellor who opened my eyes to how damaged I was. She also made me realise that it wasn’t my fault. This is the thing that us survivors of abuse usually carry with us you see, the guilt. I didn’t even realise until that point that I was as damaged as I was, or that I even felt guilty about my childhood, but believe me I was and I did.

She made me see that I needed to bury those demons of mine once and for all, if I were to move on and lead a happy life. 

In order to heal, we must face up to the past

My healing process was long and painful. It involved cutting ties with my entire family, and going through a second mental breakdown, which was triggered by hitting rock bottom and coming exceptionally close to losing everything I cared about.

Counselling was the very start for me, and although it highlighted a lot of my issues and why they existed, it still took me over four years to realise that my own self-destructive behaviour was at the centre of a lot of my current-day problems. Irrespective of why I was fucked up, the point is I was fucked up.

The only way I wasn’t going to be fucked up any more was by digging deep, and changing every aspect of my life that was causing me dramas. Nothing is as important as our mental health well being, but it can be difficult for us to appreciate this.

Taking responsibility for our lives not panning out the way we want them to can be a tough truth to accept, but it’s not about blame. It is about not allowing those demons to destroy our chances of happiness for a minute longer.

Everyone’s demons are different of course, and the changes they will have to make will depend on what is driving those demons. As for me, I quit partying, had a three month booze break, started eating well and doing more exercise. I disassociated myself from negative influences, and created lifelong good habits. During the course of six months, I worked relentlessly to turn my life around. It was the hardest yet most rewarding thing I had ever done at that point. 

You’ll never know how messed up someone is, until you try to love them

Exactly halfway between my two breakdowns, I met my husband. He has always been stable, confident in his own abilities and an all round rock solid guy. I still did my best to push him away though, and sabotage the chances of our relationship surviving. We broke up a few times in our earliest years, but ultimately he stuck by me and refused to accept that I was ‘too fucked up to be loved’.

The turning around of my life came after we had been together for almost three years. He proposed on our fourth anniversary, and six months later I fell pregnant with our eldest. To say we’ve faced lots of challenges since becoming a family, would be a huge understatement. From a horribly traumatic first birth (thankfully much nicer experiences second and third time!); to kids that don’t sleep; to having autism to contend with; and most recently, deciding to home educate. Once again the list could go on… 

How do you cope? 

In the six and a half years that we’ve been parents, we have certainly had our fair share of ups and downs, which is what inspired me to create this blog almost three years ago. I get asked on a regular basis how I cope, considering I have very little in the way of help day to day.

I truly believe the reason I’m able to cope as well as I do, on the small amount of sleep I get most nights, is because I went through the process of dealing with my demons when I did.

I faced up to the past, I changed the necessary and I buried those monsters good and proper. I put coping mechanisms in place that would see me through the toughest of times, and it means I am able to focus on present-day challenges. I have essentially compartmentalised the painful elements of my past, so they can’t hurt me any more. 

When I made the decision to turn my life around back in November 2006, I didn’t have a clue that I’d be implementing changes that would directly impact my mothering abilities.

That is exactly what I was doing though. 

Untitled designSo what next?

If you’re reading this and know in your heart of hearts that you have demons stemming back to your childhood, then you must acknowledge them.

The next step is to forgive yourself and anyone else you need to for them.

Then you need to let those fuckers go. You hear me?

Work out a plan to rid yourself of them once and for all.

Believe me you will have never felt lighter in your entire life.

Do it for the sake of your kids. Whether they are already here, or they’re a mere thought at the back of your mind. 

It’s going to be hard work, make no mistake about that, but it has to be done.  

I’ll be cheering from the sidelines, and wishing you all the luck in the world on your journey!  

 

home ed three month updateIt has been three months since my husband and I made the decision to not send our high functioning autistic 6yo daughter back to school after the half term break. Although her autism wasn’t diagnosed until last year, I’d long had my suspicions that something more than the usual was at the bottom of her incredibly poor sleep and challenging behaviour.

Lots of well meaning friends told me that school had been the turning point for their kids, the magic cure that equated to a happier child. One who was so exhausted from all the learning that their sleep problems disappeared overnight. That external discipline was just what they needed to nip those challenges in the bud.

The lions den

To be honest I had a strong haunch that this wouldn’t be the case for us. Also being a July babe and significantly smaller than her peers (children do most of their growing while they’re asleep after all) it felt like we were throwing her into the lions den in September 2013 when she joined reception.

It probably didn’t help that this was the year the government raised the expectations of reception aged kids. These four and five year olds would now be doing a lot of the work that wasn’t previously being done until they went into year one. I remember her teacher at the time telling me that the days of reception being an extension of nursery were long gone.

We sent her to school in good faith though, and I mostly kept my mouth shut about my reservations. We weren’t in a financial position for me to stop working until quite recently anyway, so I wouldn’t have been able to home ed back then even if I’d wanted to.

It’s worth saying that I believe for some families school is a wonderful thing, and I can see it might be the magic bullet for minor problems. Unfortunately for us, it quickly became apparent that school was too overwhelming for our girl. Being so high functioning and sociable, her autism largely slipped through the net, but even after diagnosis it wasn’t taken very seriously.

Bullying, safety and other concerns

Reception year was tough, but we also had our third baby mid way through, so put most of our difficulties down to that. Then came the bullying issues – in year one, involving two mean boys, and in year two involving one of her so-called best friends. She was forever being pushed over in the playground and coming home with injuries, and the week before we pulled her out she’d been pushed off a tall climbing frame and hurt her back.

She’s a bright spark who coped with the work for the most part, and was capable of holding it together while she was there, but she would take out her frustrations on us when she came home. Her behaviour got steadily worse – the pinching, name calling and spitefulness towards her younger brother and sister broke my heart on a daily basis. The post-school meltdowns became all consuming, and would last up to two hours.

We were in a perpetual cycle of sleep and behaviour slowly getting worse as the end of term neared; then hubby and I would plough all our energies into getting her back on track during the holidays, only to dread sending her in again. We were living our lives in anticipation of what state she would be in come 3:30pm, and her mood dictated the happiness of the entire family.

Ultimately, with two younger children to factor into the equation, and her getting more violent with them with each day that passed, we’d all had enough of dealing with the fallout of school.

What to do when you’re part of David Cameron’s ‘squeezed middle’, earning too much to qualify for help, but not nearly enough to pay for a private education?

The answer is exactly what we did. Our story wasn’t nearly as horrendous as others that I’ve heard, but there was only one way it was heading, and we weren’t prepared to stand by and watch it happen. As the writing had been on the wall for as long as it had, it gave me the chance to orchestrate voluntary redundancy from my part time job. We also carried out a ton of research, so should we go down this road, we were fully prepared.

As soon as the decision was made it felt like a weight had been lifted from my shoulders. The first few weeks took me by surprise with P pushing to do her work, and being very willing to learn. It didn’t last long though, and over the course of the following month it got to the point where even the mention of learning was causing her anxiety, so I declared Christmas holidays almost two weeks before the schools broke up.

It was a lesson in flexibility for me, and recognising the need to change tact. I’m very pleased to report that a nice long break was what we all needed, and since resuming our learning at the beginning of January, we’ve had a whole load of ups as well as downs on this little roller coaster of ours.

Don’t get me wrong, we’re still having plenty of moments. P is still autistic, and I still have two younger children to also care for, but progress is being made in the right direction, and that’s all we can ask for. I’ve found reading other parents stories invaluable, so I thought it might be useful to share some of my main insights.

Trust your gut

Home ed certainly didn’t limit Ryan’s career options

First and foremost trust your instincts, and do not let anyone rail road you into not doing so. My daughter is smart, outwardly confident and articulate, yet she has only recently been able to put into words how difficult she found school. I truly believe that our parental instincts are one of our most valuable tools, and we should listen to them more often.

Don’t let others opinions influence your decisions

As soon as I put it out there that we were thinking of home ed, everyone had an opinion. From worries about socialisation; to concerns that we would limit future career options. Being six, four and two, we aren’t even thinking that far into the future. We have always been a sociable family, and are blessed with lots of great friends who have children similar ages to ours, so there are certainly no qualms there. Our biggest priority right now is repairing the damage that has been done to our family, and encouraging the three children to play and bond as much as possible.

Don’t disregard or under estimate the need to de-school

If your child was previously attending mainstream education, chances are they will have issues of some description which must be considered. You’ll always have an adjustment period, and pushing them to achieve academically during this time can do even more damage. Everyone is different, but avoiding sensory overload at all costs is hugely important for us at the moment. What’s working is keeping life low key, slow paced and often child led. Absolutely nothing is as important as their mental health well being.

Kindness

Which brings me onto my next point. It is vital to be gentle on yourself and everyone else, while the whole family gets to grips with their new situation. Regardless of the family dynamic, the need to be kind to ourselves and each other will be a common theme. Eating well and being mindful helps us tremendously.

Focus

As any parent will know, you can’t give your child/ren undivided attention every second of every day, but you can give it to them in short bursts. I’ve found this is the best way to aid learning, and sitting with P while she is doing her workbooks helps with her productivity.

Create the rules together

P likes to know what’s coming next, so we sat down together, along with my husband, and devised a timetable which has been a real success. Like many other children her age, if she helps to create the rules she’s more likely to stick to them. We don’t have times on our schedule, which means we can be flexible. If we’re having an off day we can compress all the core learning into the morning, and chill out and watch films in the afternoon, or go and run around in the park. This is the beauty of being able to do things on our own terms.

So, what do you do all day?

We spend around two hours doing focussed learning spread across the day; prioritising numeracy and literacy which is done first thing in the morning. As well as workbooks to progress P’s understanding of the English language, we’ve been spelling useful words such as months and days; practising her handwriting and she’s been getting to grips with typing emails. She did do a touch typing lesson but said it made her hands hurt, so we scrapped it for the time being.

We’ve signed up to computer based maths lessons, which P loves and could sit and do all day (but I limit to an hour max). If she’s having an off day though, I prefer her to stay away from the screen, and we have maths workbooks and games we play instead. 

We then alternate every other day between Spanish, places in the world, people of the past and animals. This was borne from going through her old school timetable and picking out her favourite things, because we want her to be as engaged as possible. As well as this, all three children help me in the kitchen and we’ve just started prepping the garden for seed sowing. It’ll be our first attempt at growing food, and I want them to be as involved as possible.

What we do is very basic – for example I printed a Spanish memory game that I found on Pinterest where you have to match two cards; one is a picture and the other is the Spanish word. We have various printouts stuck around the house – such as Spanish numbers 1-20 – and the kids love listening to Spanish songs. It’s all very simple, yet very effective, and the bonus is that everyone is learning not just P.

Hopes for a happier family

Ultimately, my main priority and biggest goal right now is to get our family working more harmoniously together. We were in a terrible way three months ago, and have made huge leaps forward since we’ve been home educating. It’s still early days for us, and life isn’t perfect – but honestly when would it be with three kids?

If we continue making this sort of progress for the rest of the year, I’ll be one happy mama!

I started writing this post yesterday after a good nights sleep and very easy morning – not regular occurances in our house. As I’ve mentioned before, our 4yo has been very difficult these past 18 months. The official terms are ‘challenging’ and ‘spirited’ but lets not beat around the bush – she has been bloody hard work! She often doesn’t sleep well, and subsequently has behvioural issues. On days that follow nighttime antics she cannot behave no matter how hard she appears to be trying.

I have decided to keep a diary over the next week and write a detailed account of the morning, what happened during the day and the bedtime that followed. This should give us a bit of an insight into what’s going on and where we are failing. It would also be nice to see if any of you lovely folks have some pearls of wisdom to offer.

Towards the end of last year I was really depressed by all this, and looking back I don’t know how I held it together some days. I did what I always do in times of crisis though, and read a self help book over Christmas. Miriam Chachamu‘s How To Calm A Challenging Child was a revelation to me. A lot of it is aimed at older kids, but I found the relevant bits really useful. First of all the author writes in a way that doesn’t make you feel guilty or stupid. She asks you to look at the issue from your child’s perspective. She talks about ‘The Mountain of Anger’ – brought on by their behaviour and your lack of understanding, you and your child are slowly creeping up the mountain and it can sometimes be impossible to climb back down from it. She talks about the benefits of descriptive praise and reflective listening – finding the positive in every situation. All of these tips are wonderful and really helpful, especially if everyone is running at full capacity. The challenge for us has always been the hellish sleep deprived days.

I had a fair bit of success in the early months of the year. I was getting a lot less stressed out than I was previously, and even on a bad nights sleep managed to remain calm most of the time. Unfortunately over the last six weeks or so bad habits have crept back, and things have got out of hand again. On Wednesday evening after another horrendous bedtime, hubby and I were at our wits end and each others throats. We discussed the situation at length and agreed that no matter how hard it was going to be, change had to come from us. Four year old children are just not capable of changing themselves. Unexpectedly, that night was the first time all week she completely slept through. Yesterday morning was perfect to start hammering the descriptive praise again and biting tongues to diffuse potential kick-offs. She was immaculately behaved as a result.

Although she slept through she was still up at 5:15am, then went to nursery all day. A common theme amongst even the best behaved children is once they are tired they turn into little devils. She is no exception, and as soon I walked in to the classroom to collect her I knew there was trouble ahead. Remaining calm and optimistic in the face of adversity, I was still finding good in all she did. I also had the girls home, fed and upstairs by 6pm – not late by anyone’s standards. Unfortunately she was so exhausted and beyond reason by then that she proceeded to have a 20 minute meltdown in her sisters room while I was trying to get her ready for bed.

I got the baby down for the night so I could fully concentrate on the ‘big girl’ (as she likes to call herself). It was 6:35 and she had been rolling around the floor screaming for over half an hour. Hubby came home from work then, so I did the sensible thing and swapped places. My patience was in the toilet, and it was best all round that he took over. It was more than half an hour later when he finally got her to sleep even though she could barely keep her eyes open.

At 7:10 he came downstairs a broken man. That went well I said. It was all I could do not to burst into tears. I was anticipating an horrendous night, but she slept well considering. She was up at 5:30am today, and causing mischief from the minute she opened her eyes. Hubby managed to keep a lid on it though, and only repremanded her when she was causing actual harm to her sister. Turning a blind eye to her uneaten breakfast also seems to be helping – this has always been a massive bone of contention in our house. Along with the other tips I mentioned above we’re hoping these changes will gradually sink in, and become the norm. It will be a great day when all this becomes a distant memory.

Wish us luck! I’ll post again next week and give you an update.