Dear Sad Mama, You Are Not Alone

Hey Sad Mama,

I see you. I hear you. You are not alone, truly you aren’t.

They say it’s good to talk, that a problem shared is a problem halved. They say we need to get out of our heads and put our mental health problems out there for all to see. They say we should tell anybody who cares about our feelings. That we should put them on the table and be explicit.

Trouble is, the advice is getting a bit confusing. Unless we have people we can wholeheartedly rely on to help pull us out of our deep dark holes, we can shout and scream all we want. When our cries fall on deaf ears, it doesn’t really make a difference, does it?

sad mamaWhich is why I’m writing you this, Sad Mama

In the midst of the darkness it’s so very hard, to think positively and try and focus on all the little good bits throughout the day. To simply drown out the noise and ignore the chaos erupting around us. Multiple times daily, often hourly. To look past the negatives and see the tiny little glimmers of hope. To concentrate on that elusive pot of gold (which might or might not be) waiting at the end of the rainbow.

When before our eyes there is destruction. When all our best efforts go to waste and might as well have been chucked down the toilet. When we see the sadness from our hearts reflected in our children’s eyes.

‘Tough times’ doesn’t even come close to describing our daily existence, does it?

Then there is the fight. The constant fight for access to services and education and hell, a diagnosis in the first bloody place. The fight for others, our so-called friends and so-called family to believe our children are more than spoilt little brats.

The fight is endless. The fight is real.

So hear me now, Sad Mama

Get off your phone and out of your head. Lock yourself in the bathroom if you have to. Put some music on, dance like no-one is watching and sing at the top of your voice. It’ll lift your spirits so high, you’ll feel like you’re about to start flying.

Then go and look in the mirror and repeat after me:

“I love my kids. I am doing my best. I am trying at all costs to give them a childhood they don’t spend a lifetime having to recover from.”

Life is a perpetual roller coaster, but even in the midst of desperation there are smiles to be found. Even when sleep is non existent and hope feels pointless.

Yes indeed, I’m writing this note just as much for myself as I have done for you. For I know, better than most that hard times pass. We will manage to summon the strength to carry on from somewhere. We always do.

Big love,

Reneé ❤️

High Functioning Autism Through Polly’s Eyes

I wrote this piece because I wanted to try and convey what high functioning autism is like through Polly’s eyes. We sat together and read it, and I was fully expecting her to ask me to change some (most) of it. Instead she looked at me and said “mummy, I love it, it’s exactly how I feel.” Needless to say I ended up in floods of tears… 

My name is Polly, and I’m almost nine years old.

I look exactly the same as all the other kids my age, and I mostly act like them too.

I’m not the same though.

I have a neurological condition called high functioning autism. This means my brain is wired differently to most of the other kids I know.

through polly's eyesSometimes, when noises get too loud, inside my head starts to hurt. I know I should put on my noise cancelling headphones, but I don’t always like wearing them. If my sister is talking or singing in an annoying voice, it upsets me. I want to hit her and make her stop. Mummy says to use my words and ask her to stop instead of lashing out, but I can’t help it. My mind can’t think clearly when there is such a lot of noise going on.

Sometimes, if I’ve had a bad night’s sleep, and I’m feeling agitated, I pinch my brother. I know I should get my fiddle toys out or pinch a cushion instead, but it’s not the same. It feels nice when I pinch a person, but then I feel mean when he starts to cry.

Sometimes, when we’re eating, I take food off their plates. I know we’ve all got the same, but their food always looks better than mine, and it’s too tempting not to take it. This often leads to fights being started, but I can’t control myself. It feels unfair that they get the nicest food.

If we’re playing and they don’t listen to what I’m telling them to do, I get angry with my brother and sister. It’s annoying when they don’t follow my instructions. When they storm off to play by themselves without me, I scream “I hate you!” as loudly as I can. I don’t really hate them, but it makes me sad when they leave me out. Daddy says to jump on the trampoline and bounce away my anger instead.

Sometimes, I get cross with my brother and sister for no real reason. Mummy asks me what’s wrong, but I find it difficult to explain my feelings. When I see them playing together, and being happy, it can make me feel sad. “I wish I could be as happy as they are,” I tell mummy after I finish crying. If I’m in the right mood, I like it when she cuddles me because it helps to calm me down.

When I’m not in the mood for hugs they just annoy me even more. I get angry and start throwing things on the floor and screaming. I get so cross with mummy for not knowing that I don’t want her cuddles, and would rather watch my favourite TV shows. Next Step and Junior Bake Off always helps to calm me down, but I get sad when they end.

If I’m playing nicely with my brother, I get upset when he goes to our sister in the middle of our game. It makes me feel like he loves her more than he loves me, and I get angry and sad. I start lashing out, and then no-one wants to play with me anymore.

through polly's eyesWhen my brother and sister touch my special things, I get really mad at them. I don’t like it when my things have been moved around, and aren’t in the right order. I like to have everything in the same order, every day, otherwise it makes me feel muddled.

Sometimes I cry myself to sleep, because I know I’ve not been a good big sister. I try so hard, but some days nothing I do is good enough. Once I accidentally made a glass lamp drop onto my sister’s head, and she had to go to the hospital and have it glued back together. I felt horrible inside, and was worried that she wasn’t going to come home, like Grandpa didn’t.

It’s hard for me to be a good big sister. I want to be, and I am trying, but I don’t always do the right things.

Mummy says that my autism makes me a superhero. She says I have hidden powers that my friends don’t have. Such as remembering things like an elephant, and learning things really fast. Or when I walk into a room and work out what all the different smells are. Or how good I am at baking, even though I’m so young.

Mummy says that I’ve got deep feelings, we just need to think of better ways for me to show them.

So I’m making some promises to my family. I’m going to try and walk away if I know a fight is going to start, and keep my temper under control. If I do a quiet activity like colouring or playing LEGO before I’ve got too mad it’s much easier for me to calm down.

It’s hard to be a big sister when you’re autistic like I am, but I’m trying my best.

Mummy and daddy say that’s all any of us can do.

EDIT: October 2018, myself and the very talented Maddy Bennett are turning this blog post into a children’s picture book. Stay tuned for updates! 

 

View this post on Instagram

 

I promised something awesome for my #1000thpost and I hope I haven’t disappointed. A sneak peek inside the book my lovely and very talented friend @maddybennettcreative and I are working on. An adaptation of a blog post I wrote called “High Functioning Autism through Polly’s Eyes” Our aim is to help the siblings of our high functioning autistic kiddos, who just don’t understand why their brother or sister does the things they do. It’s not about shaming our kids, but empowering them. 💓 Polly is helping me fine tune the words, and Maddy is bringing the story to life with her amazing illustrations. We’re thinking of setting up a kick starter campaign and self-publishing old skool style (not through Amazon). Do you have any experience of doing this? Do you have kids who struggle with the unpredictable behaviour of their sibling on the spectrum? Would you buy the book?

A post shared by Reneé Davis (@mummytries) on

When Your Eldest Child is Autistic

When your eldest child is autistic things don’t follow the standard format. You can’t rely on them to lead the way for your other kids, and some days, it hurts like hell.

Oh I know what you’re thinking. That I should lower my expectations, and not put too many demands onto any of their shoulders (especially Polly’s). They’re just kids after all. Truthfully speaking, I do feel this way a lot of the time. We live in the real world though don’t we? And on the super challenging days not expecting anything and not being tempted to future gaze just isn’t realistic.

Above anything else I want them to enjoy their childhood, and look back on these years fondly. But I also want my kids to become decent human beings who can cope in this ever changing, often cruel world.

eldest child is autistic If that’s a crime, then I am guilty as charged!

When your eldest child is autistic, and you can’t leave the room to have a pee without world war three kicking off, it makes your job as a parent hard.

Really bloody hard!

Polly is very high functioning, which comes with many blessings. Yes she’s verbal and continent and able bodied, but my goodness being high functioning can also be a curse.

I refuse to be so terrified of a divided autism community that I’m not willing to admit this.

As I’ve said before, us parents of kids with additional needs are not robots. We cope with monumental levels of stress. I try with all my might to not fall into the trap of ‘woe is me’ but some days it’s impossible to not long for the life you thought you and your family would have.

My daughter is growing up

I’m becoming hyper aware of the fact that most people expect more of Polly than she’s capable of giving. Here’s the thing though, because she’s so articulate and eager to please, she will do her upmost to give her everything. For her friends, for my friends, for her grandparents, our extended family. Hell the distant neighbour who we only see once in a blue moon will, without doubt, see her as the perfect child.

For the people she mostly shares her four walls with though, it’s often a very different story. Which is another thing that stings like hell some days.

My girl is amazing at masking her autism (I wrote about it here). It’s breathtakingly exhausting for her, but she feels she has to do it, otherwise her friends won’t like her anymore. She’s already seen how fickle people can be, how they want to be your best mate one minute and drop you like a hot potato the next. She puts in a lot of effort into being ‘her best Polly’ (her words, a legacy from school) when she’s on display.

I wish more than anything that I could teach her how unimportant most of these people she is so desperate to impress are.

eldest child is autistic She came to me last week and said that she felt terrible for not being a good big sister. She said she wanted to be better the next day, and try harder. These words came totally unexpectedly, from my not even nine year old autistic child (nothing short of a miracle). I know in my heart that she wants to be friends with Clara and Freddy, but the way she treats them leaves a lot to be desired.

When progress comes though, my word it’s as sweet as a multicoloured, many layered unicorn cake.

Polly is a phenomenal child in so many respects.

You only have to take a look at her cooking on my Insta Stories, or my most highly viewed YouTube videos to see her skills in action. I have no doubt in my mind that five, ten years from now a lot of these memories will have faded. They will be distant and I’ll look back on them feeling proud of how far we’ve come. All any of us really want is for our kids to be happy, to make good decisions and be decent people. My children are all well on their way to ticking these boxes. During moments of clarity I can see this bright future of ours.

BUT, right now, these days can push me to the very edge.

Polly starting to connect the dots between her behaviour and how it effects her siblings is incredible. The thing is though, as with all of her other positive traits, it comes with a high price tag. The dreaded overwhelm. Which leads to hyperactivity, meltdowns and starting mindless fights. When our little roller coaster is on the down, Polly takes everything out on us.

Now, I can handle being a punch bag. It’s not pleasant, but I’m a grown up. I can deal with it. When she takes her moods out on the younger two it’s another story. My primal mama bear instinct kicks in.

“SOMEONE IS HURTING YOUR BABY” – it screams inside my head!

But that someone hurting my baby is another one of my babies.

What a quandary.

It pains me that Polly can be so utterly adorable for everyone else, yet has the capacity to treat us so badly. I can only hope that as time goes on, and more dots are connected, we’ll see less and less of this.

When your eldest child is autistic your other children don’t have a typical big sister/brother role model to look up to.

eldest child is autistic

Sometimes Clara and Freddy’s mere presence is a trigger for Polly. Ultimately she feels short changed by them. She has articulated to me many times that she wants all the attention for herself, and is still getting used to sharing it (even though they are only two and four years younger).

I’ve come to the conclusion that she would have been the most amazing only child to have ever graced the planet.

I’m perpetually caught between a rock and a hard place, questioning whether anyone is getting their needs met.

When your eldest child is autistic, and all your kids are hurting, you have days that need to be written off and forgotten about pronto. Days that start with a five on the clock and the fighting begins shortly afterwards. Days that reduce you to tears, many times throughout. Days where your mind wanders down the road of ‘what if…’ and you have to fight your internal monologue with all your might to shut the F up.

I don’t over-share about my children, largely because my life before my children was so colourful. When I over-share it’s about me not them. I totally get that others need to though, that it helps them through their day. If they find themselves with friends in short supply and the ones they’ve made through social media are the only ones still around. I stand by all my brothers and sisters fighting the good fight in the autism parenting community right now. We are stronger together people, truly we are.

I’m going to leave you with some words to think about. They say that what screws us up most in life is the image in our heads of how we think things should be.

Do you agree? 

How We Helped our Autistic Daughter Sleep Through the Night After Years of Severe Sleep Deprivation

If your child does not sleep through the night, you are going to love this article! Until very recently I was lucky to get four or five broken hours shut eye…

Anyone who follows this blog will already know that severe sleep deprivation has been a major part of mine and hubby’s lives the entire time we’ve been parents. I’m not just talking about a few months here and there when the kids were tiny, I’m talking not having an entire week of unbroken sleep in over eight years. I’m sure most will agree that is a very long time.

sleep through the nightPrior to our eldest daughter Polly’s autism diagnosis in 2015, we honestly thought we were just clueless parents, convinced that we must be missing a trick. We had to be going wrong somewhere along the line. Why did everyone else’s kid sleep through the night but not ours?

There’s no way to dress it up, right from birth Polly was a terrible sleeper. We didn’t know any different though, and took it on the chin in those early days. Things got really bad for us when I was heavily pregnant with our second daughter, Clara. After a hideous night of almost no sleep at all, I went to work and cried my eyes out, begging my old boss to let me start maternity leave a few weeks before I was due to.

By the time our new baby came along we were dreading the sleep side of things, and totally expected the worst

Fortunately for us we were blessed with an incredible sleeper. With no intervention from us whatsoever, Clara was getting a solid twelve hours by the time she was three months old. Polly however was up every night, seriously distressed, having monumental meltdowns. Her behaviour during the day was beyond challenging, and I look back on this time with immense sadness.

Everyone was miserable and it was definitely a turning point for us as a family. I went into frantic mama bear mode. Having suffered with gastro problems myself as a child, I became convinced that Polly’s issues were linked to allergies. Turns out I wasn’t entirely wrong, because just before her third birthday she was diagnosed with a food intolerance list as long as your arm. Cue two years of strict exclusion diets, as well as our third child.

The clean eating certainly helped, but it didn’t solve Polly’s sleep problems. By the time Freddy came along we’d read every website and parenting self-help book we could get our hands on. No matter what we tried nothing seemed to help Polly sleep through the night.

sleep through the nightThat is until our first autism assessment, where we heard two words that would change our lives: sleep hygiene

This term had never come up in anything we had previously read, but it instantly felt like we were being handed a gift. Sleep hygiene is essentially a series of bedtime (and for us nighttime) habits that need to be set in place and stuck to rigidly. It sounds so simple, but let’s face it, especially in hindsight, it always does.

The reason I feel qualified to share our experience now, is because we’ve been doing these things for more than two years and have ruled out any happy coincidences. I can put my hand on my heart and say that they definitely work.

Create good sleep hygiene, to help your child sleep through the night, using these steps

“Figure out a bedtime routine that suits everyone, and stick to it like glue.”

Our paediatrician Dr. K’s words now sound like a complete no-brainer. Trust me though, having sat on both sides of the fence, I know how hard it can be to devise, implement and adhere to a routine. With the best will in the world, life gets in the way doesn’t it? The thing about a sleep problem, is that it really needs to be given top priority within the family. When your child is sleep deprived, so are you, and we all know that it’s a form of torture.

sleep through the nightGive yourself at least three months to put these steps into place, without expectation or changes to the schedule. We started seeing improvements in Polly after the first week, but once we’d been at it for three months real progress was evident.

Things to consider before anything else

Creating a good sleeping environment is just as important as the routine itself. A dark cosy room, which isn’t full of distractions is a must, especially for children on the spectrum whose minds can be more difficult to quiet at the end of a busy day. Polly had her own room for years, and our younger two shared, but we moved her in with Clara about a year ago and it improved Polly’s sleep even further.

Something we hadn’t banked on was that sometimes Polly was waking in the night because she felt lonely, and now that she has the presence of her sister in the room that isn’t the case.

The girls adore their bunk beds and devised a rota among themselves for who sleeps at the top so there are no arguments. They agreed that Polly could go first as she’s the eldest, then after one week it was Clara’s turn, then Polly, etc. During the first week they actually decided they liked the Polly up top/Clara at the bottom set up and have not been arguing about swapping.

For those considering bunk beds for children who have a fairly small age gap, and will find any excuse to argue, I can highly recommend thinking about a rota.

Things to do before bedtime

It’s easy to say keep stress to a minimum, but it does massively impact the witching hour. In my experience stress has always been the number one trigger for meltdowns during bedtime. The trouble is, once stress hormones have been stirred up, it can be very difficult to get your child to go to sleep.

sleep through the nightIf there’s one thing I’ve learnt, it’s that calm is the most important factor in getting a decent nights rest. Even once a child is asleep, the quality of that sleep will likely be poor if they’ve stressed themselves out beforehand.

My children usually watch a film in the early evening, and we don’t allow small screens past 5pm. We have at least half an hour, if not longer, downtime between the TV going off and the kids going to bed. This allows them sufficient transition time from one task to the next.

Things to do during bedtime

I take my hat off to those who have multiple children of varying ages, and manage to stick to a routine at the exact same time every single night. For us we aim for certain things to happen within a time frame, but with the best will in the world it isn’t always possible.

We also find with our kids that a routine will work for a few months, then things will start sliding and need to be changed. We have structured our evening quiet time around playing LEGO, colouring, doing jigsaw puzzles and reading stories. At the moment they are enjoying meditation sleep stories in bed, which help them relax before dropping off.

It’s also vital that Polly gets to tick everything off her mental check list before going to sleep, otherwise she feels like something is missing. She needs to have fresh water in her bottle, she needs to know the details of what will be happening the sleep through the nightnext day, her hair has to be tied up in a certain way, and she absolutely must get goodnight kisses from the entire family. It took us a long while to realise that not ticking everything off her list was causing her serious anguish.

Things to do for night time wake ups

The million pound question for us c.2015 was what to do in the middle of night when Polly woke up distressed for whatever reason. The answer was getting to the bottom of what she needed and finding a solution as quickly as possible.

When we started out, Polly was waking on average ten times a night, often having bedtime-like meltdowns in the small hours. We were advised by Dr. K to silently guide her back to bed, without interacting with her, even if it took all night. My husband and I were absolutely dreading this, and the first few nights were indeed horrendous, but by the end of the first week we saw a massive improvement. By the end of the month we were astonished at how far we’d come, and by the time we had hit the three month mark she was consistently sleeping through the night for the first time ever.

Nowadays Polly only wakes in the middle of the night if she needs the toilet, or has had a scary dream and wants some comfort. I honestly cannot remember the last time she was up for more than fifteen minutes in the middle of the night.

An overview 

Bottom line is, if your child is a poor sleeper, you are going to be sleep deprived which adds an extra layer of difficulty to your days as a parent. Here are my biggest tips to help your kids get some Zzzzz’s:

  • eat a healthy balanced diet of real food
  • rule out any medical problems
  • limit small screens, especially in the hour or two before bed
  • ensure their sleeping environment is comfortable, a good quality bed is an absolute must
  • keep stress to a minimum
  • structure your bedtime routine around doing quiet activities to wind down
  • read or listen to stories while your child is in bed
  • make sure their mental checklist has been completed
  • meet their needs in the night quickly with minimal interaction

Best of luck mama’s and dada’s. I hope you get your child sleeping through the night in no time! 

When “One of Those Days” Becomes Your Normal and You Have Cried All the Tears

one of those daysAll parents have had one of those days

In fact, most of us have lost count of them by the time our first child reaches toddlerhood. The thing is though, when they become the norm, and the good days become the exception to the rule, we’ve got serious problems on our hands.

They say the sum of our parenting parts will determine the future stability of our children. In other words, we shouldn’t beat ourselves up over one of those days. Everyone has them, and they are to be expected. We are encouraged to write them off by self-medicating with junk TV/booze/meditation/the gym/a yoga session. This would of course work wonderfully, providing one of those days aren’t too frequent.

What the AF are you supposed to do when they make up at least half of every single day? When all your best efforts are thrown in your face and it would seem that nothing is helping your kids. When they are in pain, and look to you for solutions, but you have tried everything already? When you literally get over one obstacle, which you were convinced was the root of so much, only to have another mountain of an issue to have to try and solve the next day?

one of those daysJust. Stay. Positive (right?!)

They say that we should tune out to the negative and embrace the positive. I have subscribed to this mindset in the past, and firmly believe that when we only have ourselves to worry about this should go without saying. Unless we’re homeless, hungry and totally skint, there is always a silver lining to be found if we look hard enough. When we add kids to the mix though, life becomes complicated, and it’s not so simple anymore.

I’ll tell you a secret, and not because I’m bragging, because I need to remember it. I absolutely ACED the early motherhood years – the ones that so many other people I know found excruciating. Even through all the sleeplessness and reflux and allergies and eczema. Even through the zero contact with my family, and only working part time so not having a huge amount of spare cash. Even through three pregnancies, which my body did not find easy.

Five years in it was another story 

We had three kids, an autism diagnosis, and a seriously unhappy girlie at school. The extra needs made our lives mind blowingly challenging. They still do.

Essentially I am parenting a child whose language I don’t naturally speak. I am learning every day how to be the mama she needs me to be. Whilst at the same time still being sensitive to the other two, who also have varying needs.

The jury is out for us on whether those needs will come in the shape of the spectrum, but it’s irrelevant anyway. All children are different, and all children on the spectrum are different.

Why I’m starting to loathe the so-called positive quotes on social media

When your offspring are pushing you to your very limit on a daily basis, it can be tough to dig deep enough to find the tools you need to cope. When your kids have extras, plastering on a cheesy smile and “faking it until you make it” just does not cut the mustard. Neither does looking in the mirror and telling yourself that it’s only “one of those days” or “I am enough”!

It kills me to admit this, but sometimes I am not enough for my three. Some days the self-sabotage that goes on inside these four walls gets the better of all of us.

one of those daysI am constantly looking for ways to improve my parenting abilities, and so is my husband. Yes we bicker, but we are a team. I’ve read so many parenting books and they all say the same thing: consistency is the key to success. When you look around and feel that none of your efforts, no matter how consistent, have sunk in, what then?

You end up feeling like a complete failure 

At the beginning of last year we were in a terrible way. Christmas 2016 was largely horrendous, we had one girl being home educated and the other one in school and hating it. Our then toddler was up half the night every night, and frankly the whole family was in a dire mess.

By mid March I started seeing a glimmer of hope. It felt like we were making progress – we’d decided to remove Clara from school, Freddy was sleeping a little better and Polly was impressing us with her maturity.

Finally, after putting out non-stop mummy fires for as long as I could remember, it felt like we were on the up!

The euphoria was to be short lived though 

Within weeks Polly had bashed her face on the slide at the park and knocked her two front teeth out. What followed was six months of dentist appointments, annoyance and agitation. Polly’s stims started coming in the form of rubbing her teeth on anything she walked past, and she still does this almost a year later. This means that she has weakened her teeth, which in turn means they are super sensitive. They hurt her when she’s brushing them, and the temporary fillings come out more often than they should. More dental appointments. More annoyance.

By the end of last year, after a grinding amount of effort on my behalf, it felt like we were on the up again. Now, not even one month into the new year we’re back to that awful place. Polly has low level agitation going on over several things that we have on the horizon. Her triggers have become very complex, and in fact right now her brother and sister are setting her off more than anything else.

Putting out mummy fires has once again become the order of the day. Even with yoga, and clean eating and super present parenting. Even with minimal time spent on social media, and not nearly enough effort going into this blog or my book. I look around most days, and wonder how on earth we got here. None of us deserve the stress and upset this life is causing us.

The scary thoughts that whirl through my mind

Some days I look at my children and I want to run away from them. As far away as possible and never come back. What kind of monster of a mother must I be to have these toxic thoughts? It’s gone so far past having one of those days, but no matter what I do, I just don’t seem to be making enough of a difference. Don’t even get me started on my fears for the future and what will become of these kids in this big bad world. It literally terrifies me.

I spent almost three months of last year stone cold sober, and still these thoughts. I’m beginning to think that the chronic stress has got the better of my mind.

one of those daysI don’t know what the solution is. Giving more just does not seem feasible, because I honestly don’t know how much more I have to give.

Get more respite most would argue, but how? With no family my side and minimal help on the other side. My kids abhor being left with strangers, and look how school has worked out for us in the past.

The irrational side of my brain is screaming GET THE HELL OUTTA DODGE! Take the family around the world and have an adventure.

But the logical side is saying, ha ha ha, that’s not going to solve your problems is it?

Once a traveller, always a traveller, I guess. 

If any of you out there have an idea you’d like to throw my way, by all means please do. As always big love for the mama’s and papa’s out there feeling this way… 

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