poem about motherhood

It was a massive honour to be asked to guest blog for the amazing AutismAwareness.com. They do wonderful work in not only raising awareness of autism, but supporting parents through their journeys. They reach millions of people every month who discuss, learn and explore topics of interest to special needs families.

Here’s a snippet of my piece 

“Usually I’m as good at masking my sadness as Polly is at masking her high-functioning autism. Lately though, I’m being asked a lot if I’m okay.

Just to be explicit, I am not okay.”

You can head over to their site for the full post, by clicking on this link here.

Notice the title of this article isn’t: “how to love your autistic child,” or “how to love your SEN child?” That’s because a challenging child can happen to anyone. Additional needs or not.

Cards on the table: I’m going to come right out and say that parenting my own challenging child is the hardest thing I’ve ever done.

It pushes me to my very limits, whilst simultaneously making me feel like an absolute failure. I have never felt so torn in my life. Every tiny decision I make has to be carefully considered. All options weighed up, to ensure it doesn’t end in complete catastrophe.

The seemingly smallest thing can have the biggest knock on effect. We can be having a lovely time one minute, and the playing field can dramatically shift thirty seconds later.

All emotions are felt. Every. Single. Day!

I have to be on my game, one step ahead, the entire time. Otherwise it’s meltdown central. I probably don’t need to tell you how exhausting it is, especially on such broken sleep.

So I thought I’d write down some of the things I’ve learnt on my journey of loving my challenging child. It’s more to remind me than anything else, but I figured someone somewhere might also find it useful.

In the heat of the moment, it’s best to say nothing

Zip your lips and throw away the key. Honestly, in the midst of sparks flying, it is best for all concerned to keep your mouth shut. I’m not ashamed to admit that this is my own biggest challenge, especially during certain times of the month. It’s crucial though. Which brings me nicely onto my next point.

Don’t be afraid to self-reflect

We absolutely must be kind to ourselves, because we ALL mess up. Me usually on a daily basis. However we must also be willing to look in the mirror and admit when something is our fault, so we can find ways to do it differently (and better) next time. Having a challenging child on your hands will test your patience, strength and faith in life. It’s vital to work as a team though, and find solutions to your troubles together.

Offer comfort, but be prepared to give it on their terms

In parenting fantasies, before I had any of my own children, I used to think that spats with kids would be easily rectified. A few hugs, a few sorry’s and voila, everyone has made up. In reality, it simply does not work like this with a challenging child.

They can be spiky beyond belief, and even when they’ve been the root cause of the destruction, they will more than likely think they are the victim. I always offer comfort, but I’ve learnt that it often isn’t taken up when I think it will be. But when they are ready to accept the love, they will come and ask for it.      

Do not, ever, compare your children to each other or to anyone else’s kids

It would be easy for me to get into the mindset that my high functioning autistic eldest daughter Polly is always the most challenging child, but this isn’t actually true. All three of my kids have their moments. 

If 3yo Freddy has had a particularly fitful night, and is running on four hours of broken shut eye, he can be exceptionally challenging. If 5yo Clara is unwell or not sleeping great it has a massive effect over her ability to communicate without screaming in faces. They are so different from each other and other kids we know, that it would be deeply unfair on all parties to compare them.         

Kindness rules

This is obvious, but when tempers are lost and fury is in the air, kindness can all be but forgotten. As the adults however, we need to summon the strength from somewhere, somehow, to rise above it (which I know, is so much easier said than done). If we aren’t being kind to our kids, how can we expect them to be kind to each other?   

Start the day with a clean slate

No matter what happened yesterday, or last week, we absolutely must start each day with amnesia. I wouldn’t be able to get out of bed in the morning if I was holding grudges for the things that have gone on inside these four walls. My husband has a great mantra:

“Only love today”

It’s a good one to hold close.   

Respite is utterly essential

Not just for the primary caregiver, but a break from the challenging behaviour is super important for the whole family. We’re only too aware that Clara and Freddy suffer when times are super tough, so it’s essential to give them a break from the doom and misery. A few hours love bombing, going to the cinema or being taken swimming on their own with just hubby or I is a real treat for them. It goes a long way to repair the hurt that they’ve endured. 

As for us parents, life cannot be 100% about the children 100% of the time. We all need a break from the norm now and then, and especially when we’ve got a challenging child on our hands. I also don’t think it’s a bad thing for our kids to see that we have a bit of a life outside of them. 

Are you parenting a challenging child? What have you learnt on your own journey? I’d love to hear from you! 

A story of mental health #mhaw17When I found myself pregnant with Polly in 2008, the state of my mental health had never been better. At the ripe old age of 29 I’d already been on a remarkable journey.

Extraordinary even

I had survived a dysfunctional childhood, and self-destructive young adulthood. I’d dragged myself through two mental breakdowns, and experienced the highest highs and lowest lows.

I had travelled the world, and met my awesome husband along the way. I’d made the most wonderful friends a person could wish for. Which is just as well, because at 25 I estranged myself from every single member of my family. 

I’d also learnt (the hard way) that the answers to life’s problems could not be found at the bottom of a bottle.

Believe me, I’d searched every external crevice for happiness, and realised that it comes from within.

I learnt that to be happy, I would need to look in the mirror and like what I saw

I had to distinguish between my wants and my needs, and get to know who I really was. I’d need to forgive myself for the things that I wasn’t proud of. I’d need to truly let go of the past so I could make peace with it.

I was in such a good place when Polly came along. Even a traumatic birth didn’t stop me from loving her fiercely from the second she came out. To be honest I didn’t properly recognise it as traumatic until I was giving birth to Clara two and a half years later. That’s a whole blog in itself though.  

I walked everywhere that summer, staring at my beautiful baby in wonder. Had I really made her? Could I really be that lucky?

By the time I became a mum I had overcome so much, that I honestly thought the hardest bits were over.

Surviving: A Story of Mental Health #MHAW17Oh how naive I was

I never, in my wildest dreams, imagined that my own children could push me to the edge of my sanity. That I would watch my mental health deteriorate and feel powerless to do anything about it.  

Friends with kids had somberly warned me about newborn sleep deprivation. They’d said to watch out for pesky teeth, and strange changes that occur when babies are going through growth spurts.

A good friend, who’d had two kids very close together, had said to expect one seriously tough day a week. A day so bad I’d be reaching for the gin before the witching hour was over. One that I’d want to completely forget about as soon as the kids were asleep.

That’s not going to happen to me, I thought, no way. I’d leave a sensible age gap between my kids, having them super close sounds like a nightmare.

My girls are 2y 7m apart, and take it from me, the age gap is the least of our troubles

At seven months pregnant with Clara I found myself sobbing to my ex boss.

“I’m so exhausted, I don’t think I can last another three weeks until my maternity leave is due to start.”

Fortunately he’s a family man himself, and one of life’s good eggs. He let me tie up my loose ends and finish that day. If only all work managers were like him.

Back then I had a toddler who would get up ten times a night as standard, have huge meltdowns at 3am, and refuse to go to her daddy. As well as that we had a very noisy neighbour on our hands, who would be up all hours. 

We managed to muddle through though, and cope. Somehow.

Surviving: A Story of Mental Health #MHAW17When Clara was born I did everything I could to enjoy her baby days. Knowing how fast they’d go, I drunk up every delicious drop of that gorgeous girl. 

Polly was jealous of her sister, beyond what felt normal, and it was heartbreaking watching her regress. Nursery was more of a hindrance than a help, but we thought we were doing her good by letting her socialise. She was diagnosed with an allergy list as long as my arm, and so began years of exclusion diets. More frustration. More difficulty. 

Fast forward fifteen months, and a prosecco fuelled evening lead to Freddy being conceived. (Hubby has never touched the stuff since!)

By then I was back to work, and the girls were both at nursery. Clara slept through from ten weeks old, which was just as well, because Polly was still up all night. Challenging behaviour was the order of the day.

I found myself wondering on an hourly basis how I’d cope with three children when two already seemed like too many

Freddy’s pregnancy was the toughest, but with two kids to keep me busy it went fast. Two maternity leaves in three years.

Polly started school and struggled massively from day one. 

“She’s fine when she’s here.”

Oh how I loathed those words, and the patronising delivery of them. The inference being that we must be doing something wrong at home. Clearly the meltdowns and night time antics were either exaggerated or our fault.

Polly’s allergies weren’t getting better, so we had her tested for every gastrointestinal disease under the sun. Nothing. When a leading gastro paediatrician told me the tests had come back in normal range I knew what was coming next.

Autism. Diagnosed a year later

Surviving: A Story of Mental Health #MHAW17By then it felt like we were a broken family, and we desperately needed help being put back together. No such luck. When you live in London under the Tories, you’re on your own. 

Polly was on a clear cycle by then. Sleep and post-school meltdowns would get worse as we neared the end of term. Then we’d plough all our energy into making her happier over the holidays only to watch our hard work unravel when she went back.

My poor baby girl was severely overwhelmed by school, and they were doing precisely nothing to help her.

Home education wasn’t a last resort, but I wasn’t going to sit back and let it get that bad. Eighteen months later, and here we are.

Yes we’ve made progress, but the set backs can send us to square one in a heartbeat

We’re now the noisy neighbours. Our kids are loud. They have meltdowns and tantrums multiple times a day. Individually they’re awesome, collectively they make me want to cry.

I have good days and bad, but just lately there haven’t been many good ones. The challenges have been never ending, and keep on coming.

My previously rock solid marriage can feel as shaky as a dingy in the middle of the ocean on a stormy night. Most days I want to punch my husband in the face when he leaves the house to go to work, because he gets a break from it all.

Sleep is better than it’s ever been, but it’s still rubbish. Freddy’s in our bed every night. Polly’s often up. And although Clara sleeps, getting her to bed can be a tiresome task. She’s not getting enough Zzzzz’s and unlike her brother and sister, who are used to running on empty, she can’t handle it.

Home education often means being a prisoner in my own home. If Polly is anxious and exhausted and I can’t convince her to leave the house. Most days I have fun things planned for us to do, but usually we do none of them because we get caught up in Polly’s rage. She’s taken to using me as her punching bag. At least she isn’t being so violent with the younger two.

Surviving: A Story of Mental Health #MHAW17Eight years ago, when I was nearing the end of Polly’s pregnancy, I thought I had it all sussed out

Surely motherhood was like everything else? The harder you worked, the more rewards you would reap? I’d just work my butt off, and give my absolute all to my kids. Surely that would equate to happiness?

To be completely honest, even if it was possible to go back in time and tell my thirty year old self how it would actually be, I probably wouldn’t have listened anyway.

My plan was fail safe. I’d just love my kids more than everyone else loved theirs, and not make ridiculously stupid decisions that would mess them up in later life.

Once again, I’m learning the hardest way that it’s not that simple though. So here I am, eight years later, feeling more clueless now than ever before. The game is constantly changing, and I have no frigging idea what the rules are.

People warn you about maternal and post-natal depression. Nobody tells you about surviving chronic stress due to challenging children. 

The emptiness you can feel when you give everything to your kids and get treated like the enemy

The cycle of self-loathing that’s created from having toxic thoughts about the little people you created. 

The loneliness you can feel, even though you can’t take a pee in private. 

All any of us can do is try our best, and hope that when all is said and done, it was enough

**sharing for world mental health awareness week**

How to Help a Child with High Functioning Autism Regular readers will know that my eldest daughter Polly was diagnosed with high functioning autism in June 2015. You can read more about our diagnosis here if you like. To say that we’ve been on a steep learning curve ever since would be the understatement of the century. As it’s world autism awareness day, I thought I’d share some of the things that have helped us, as a family, come to terms with the wonderful world of autism. Hope you find this article useful.

Love, acceptance and early intervention

It should go without saying that unconditional love is at the foundation of my family. Even through the tears, fights and explosions, we love each other fiercely, and that counts for a lot. If I’m completely honest, I had a deep gut feeling that Polly was autistic years ago, but fearing the great unknown, was completely in denial about it. By the time she was diagnosed, I had already done a lot of accepting, and grieving for the life we wouldn’t have.

I don’t view Polly’s diagnosis as a label, far from it. I see it as a necessary part of getting her as much help as she needs, as quickly as possible. Without knowing that she is autistic, hubby and I might not have taken the stance to home educate her. Without the diagnosis, we probably wouldn’t be as forgiving of her anger or meltdowns, because we wouldn’t understand what drives it. I’ve written before about meltdown triggers. Knowing what we’re up against means that we can either avoid potentially difficult situations, or prepare for them in advance to relieve some of the stress and anxiety for our girl.

Children with high functioning autism often appear to be just the same as everyone else their age. Girls in particular are exceptionally good at masking their difficulties in public. They’re not the same though, they need more understanding and support than most other kids, and the earlier you can intervene the better. Although it’s nice to say that the world will just have to accept our kids as they are, I don’t think this will prepare them particularly well for adulthood. They will have to be independent one day, and our job as parents is to equip them as best we can with the tools they need to navigate the minefields in their way and thrive.

Polly looks for near constant reassurance – from her family, friends and anyone else she comes into contact with. I’m starting to see that a lot of her sadness comes from her feeling like she isn’t getting it, or isn’t getting enough of it.

Good sleep hygiene

At the time of diagnosis, Polly was waking up ten times throughout the night as standard. I’m not quite sure how we managed to survive those days to be honest, looking back it doesn’t seem possible. We invested a lot of effort in getting our girl to sleep better. No one thing was a magic bullet, but creating a bedtime routine and sticking to it like glue has really helped us.

We always have TV or a film during dinner time, because it keeps the kids at the table and focused on their food. That goes off at least one hour before we walk upstairs. During that hour we have quiet time: Lego, reading, drawing, colouring. Excitement is kept as close to zero as possible. When we go upstairs we read, and have meditative sleep stories running while the children are dropping off. This whole process is of course significantly easier when my husband is around. When he isn’t, I improvise, but stick to the routine as best I can. 

When Polly was still waking multiple times every night, we would silently guide her back to bed, via the toilet if she needed it. We were advised to not interact with her at all if she woke during the night. This took about a week to start noticing a difference, and was a tremendous positive for us. Polly sometimes sleeps through these days, and if she wakes it’s usually only once to go to the loo.

However, during times of heightened anxiety she finds sleeping very difficult. Also some nights she sleeps all the way through but wakes up looking like someone dragged her through a hedge backwards. She fidgets a lot, and we suspect that her quality of sleep is pretty poor. It’s a far cry from two years ago though, and if nothing else, I’m very grateful that the middle of the night meltdowns are behind us.

Children need their sleep, it’s as simple as that. We knew that we only had capacity to deal with one thing at a time, so poured all our energies into this arena directly after diagnosis, and I’m glad we did.

Some basic do’s and don’ts that I live by

how to help a child with high functioning autismDon’t waste time fretting about the future. This is so much easier said than done, and parents will always worry about their kids. However there is a line to be drawn somewhere. I came across a great quote recently which made me think about this in a different light. ‘Worry is interest paid on a debt you might never have.’      

Don’t promise something you aren’t intending to deliver on. Our biggest meltdowns come from Polly thinking a certain situation will go one way, but it ending up going another way. If she doesn’t have time to process the change, it sends her world into chaos.

Don’t threaten a punishment, but do give an immediate consequence if certain behaviours warrant one. As soon as something becomes grey, it causes problems for us. We had to work super hard to help Polly understand that her violent behaviour towards her brother and sister was unacceptable. The way we did this was by issuing an immediate consequence if she caused them physical harm. You can read more about it here if you like.     

Don’t get too hung up on what you think your child(ren) ‘should’ be doing. It is said that comparison is the thief of joy, and when it comes to swapping notes about kids I would 100% agree. By comparing our own children, or our kids towards others, we are doing them a massive disservice. We are all different, and should be treated individually.        

Do give your kids a loving push. As the amazing Temple Grandin says, we should never stop giving our kids on the spectrum a loving push. Gently easing them out of their comfort zone is a great thing, because they will need to live in this complicated overwhelming world without us one day.  

Do encourage a physical activity. Polly did gymnastics lessons for two years, which helped immensely with core strength and slight hyper mobility. When it became clear, towards the end, that she wasn’t enjoying it very much we knew we needed to find her something different. She now goes to jui-jitsu, and it’s doing her just as much good as gym class did. There are certain obstacles that come up, such as not enjoying standing in front of everyone during grading, but overall she’s really enjoying it. There’s a lot to be said for feeling the fear and doing it anyway. 

Sensory activities

to help a child with high functioning autism

We had a blast at the Lego Store in London recently!

Kids on the spectrum often greatly benefit from sensory toys and activities. We make the following easily accessible for our children to play with whenever they want to.

Play dough: No introduction necessary. Click here for my super easy no bake recipe, which will save you a fortune over the years.

Play foam: This brilliant sensory toy is thousands of teeny tiny Styrofoam balls connected together with a non-toxic glue like substance. The kids can pinch it, twist it, pull it apart and fiddle with it until their hearts are content. Play foam was instrumental in helping Polly to stop pinching her brother and sister.

Kinetic sand: Polly loves to bake, but some times it’s just not practical. We might not have ingredients, or we might already have a full cake tin from yesterday’s efforts in the kitchen. At times like this, kinetic sand comes in particularly handy. It never dries out, doesn’t smell and doesn’t create as much mess as play dough.

Lego: This timeless classic is a must in any house and makes a wonderful family activity. I love watching my kids use their imaginations, and problem solving skills when they’re building their masterpieces. Lego is also great for the development of fine motor skills. Our box of Lego gets played with every single day.

Home made play slime (video recipe below)

Clean diet

When Polly was two and a half, she was diagnosed with a huge list of food allergies. We put her on a strict exclusion diet, and after a few years most of them are thankfully now a thing of the past. The one that has stuck has always been the worst offender: corn, which comes in many guises. In fact there are almost one hundred corn derived ingredients that are often given scientific sounding names. Corn is exceptionally cheap to produce, and high fructose corn syrup (HFCS) is sweeter than table sugar. Can you see where I’m going with this?

HFCS is sneaked into so much processed food, that it made not cooking from scratch near on impossible for us. It was a huge chore at first, but I now see it as a blessing in disguise. It opened my eyes to how much rubbish, especially the sugary variety, is in most pre-made food. Nowadays I wouldn’t feed it to Polly if you paid me, because it makes her bounce off the walls. Don’t get me wrong my kids aren’t totally deprived of sweet things. They eat plenty of home made treats, made out of real ingredients such as nuts and dried fruit. 

I know there is much said about putting autistic children on a gluten free, dairy free diet but unless you are making the food yourself, I’m not sure how much benefit you’d see. The trouble with processed GF/DF foods is that they are often loaded with unnecessary ingredients. Don’t be seduced by fads, and always do plenty of your own research. I would personally advocate cooking more food from scratch if you aren’t cooking much at the moment. I know it can feel like an impossible task, and trust me I’m no stranger to fussy eaters. Small baby steps are the only way to make a long term difference. Start out with easy wins, have a look at my healthy treats Pinterest board if you’re in need of inspiration.

Some of the books that have helped us (google them to learn more)

Autism… What Does it Mean to Me? by Catherine Faherty

Today I Feel Silly and Other Moods that Make my Day by Jamie Lee Curtis

Ellie Bean the Drama Queen: How Ellie Learned to Keep Calm and Not Overreact by Jennie Harding

The Huge Bag of Worries by Virgina Ironside and Frank Rodgers

All Cats Have Aspergers Syndrome by Kathy Hoopmann

Love Bombing by Oliver James 

The Explosive Child: A New Approach for Understanding and Parenting Easily Frustrated, Chronically Inflexible Children by Ross. W. Greene

Ultimately, high functioning autism is a journey for the entire family. Wishing you the best of luck on yours ❤️

Why My Daughter's Ability to Mask her Autism Brings me Zero Comfort

photo credit: Le Coin de Mel

Another post I’ve been wanting to write for too long, but have only managed to do so in my head until now. Another post I’m hesitant over pressing publish on. I’m not entirely sure why, when I so desperately need to get these words out. I’d like to talk today about my eldest daughter Polly’s autism masking skills.

I went back to work when Polly was eleven months old. She was at day care two days a week, and did a full year at pre-school. She then did two years in mainstream school before we made the decision to home educate her.

Polly learnt her autism masking skills at a very young age

In many respects, she’s the master of disguise. I’ve heard words to this effect countless times from friends and family.

“She’s the perfect angel when she’s with us.”

“She puts my own kids to shame.”

“I wish my own kids were as well behaved as Polly is.”  

I’m not a tiger mum, and I’ve never been a fan of chameleon-like behaviour. I’m very much a what you see is what you get type of person. The masking is perhaps the hardest thing for me to understand about Polly’s autism.

Other people telling me that my daughter is the perfect child, can also feel like there’s a hidden meaning behind their words.    

The trouble is, all the masking is exhausting

It brings me little comfort to know that Polly goes to the effort of masking her autism for others. Because she so often treats her family like pieces of dirt.

That might sound harsh, but in the last few days I’ve been kicked, hit, punched. I’ve had things thrown at me, and been told that I’m hated. For many years this pent up anger was directed at her younger brother and sister. We’ve had to work relentlessly hard for Polly to truly understand that it’s not acceptable for her to be so violent towards them. I’m pleased to say that things have massively improved on that front. Finally the out and out spitefulness has (thank the heavens) abated.

Now it’s directed towards me instead

autism maskingIt should go without saying that I’m happy to be the punching bag, if it means my little ones aren’t copping it. But where does it stop? I’ve read so many heart wrenching stories of ultra violent autistic tweens and teens. 

Worse still are the stories of autistic adults in their twenties, who are depressed. Who self-harm, and starve themselves. Who are so miserable at their core, and don’t know how to get back to happy. 

I might be completely wrong, but it feels that Polly’s autism masking is at the root of her sadness. That she’s perpetually exhausted by feeling she has to behave differently depending who she’s with.    

So how do we get her to stop masking, and just be happy to be herself?

I don’t have the answers unfortunately.

Home education is helping, without a doubt. We’re making our way through a fantastic autism workbook, which is enlightening. I constantly praise her for her efforts, and try and explain in depth why she is or isn’t allowed to do certain things. I tell her we love her, and offer her hugs multiple times throughout the day. We’ve even swapped gymnastics for jui-jitsu.

We are so bloody consistent with our parenting it makes my head hurt.

But still this aggression. This violent streak that just doesn’t seem to be going anywhere.

I know that worrying won’t help, but it’s a parent’s prerogative right?

I guess for now, I can only hope that the things we are doing will make a difference long term.

Does your child mask their autism? Do you have any advice for me? I’d love to hear from you!