sorry about the noiseWe live in a lovely house on a private estate, and I’m proud to be part of a proper little community. Just like in the olden days, we let our kids play out and at times it can feel as though the only socialising we do is with the people on our doorstep. This is not a bad thing by any stretch of the imagination. We are exceptionally fortunate that many of our neighbours have kids the same age as ours, and lots of us are on the same page when it comes to our outlook on life.

There are of course exceptions to this rule. Like the delightful woman that gave me a character assassination in front of my own children, after a nine hour trip back from Greece last May. Her beef was that we hadn’t informed her in advance that we were having work done on the house in our absence. Unfortunately the workmen had upset her by making a racket too early.

Apparently this was all my fault because I’m “so selfish”! 

She has gone on to complain to us and our landlord a handful times in the last seven months – about the noise levels. Most recently giving my poor hubby a telling off because he had lost his temper and shouted that morning. This woman has one child who has just turned 16, so it’s been a very long time since she’s had experience of witching hours and kids that wake up in the middle of the night. While I don’t care for her one little bit, there is a small part of me that wants to knock on her door and spell out for her how difficult our lives are to muster some empathy.

I want her to know how grinding it is to have a child who pushes you to the end of your tether every single day. How incredibly hard we are trying to stay cool, calm and collected in the face of adversity, but how beaten down by life we feel far too often. And although we are sorry about the noise, it is not at the top of our priority list. We have bigger fish to fry – like getting our daughter to a happier place and helping our family back on it’s feet. 

Oh by the way, did I mention that Polly is autistic? No probably not because her diagnosis came after we stopped exchanging pleasantries.    

I felt so bad for my poor hubby, because I know how hard he’s been trying to not lose his temper. To stay calm and not shout. To follow all the rules and GET. IT. RIGHT! 

Except there is no getting it right is there? All parenting is hard work, but parenting a child with autism is so challenging it’s likely to bring even the toughest of us to our knees

I think it’s too easy for parents to judge other parents. After all they’ve got direct experience of the situation. Or so they think, but they haven’t of course. No-one knows what goes on inside your four walls apart from you and the other people that live within them.  

If you hear shouting and screaming coming from your neighbours occasionally, please don’t assume the worst – that they must be awful human beings who are damaging their children. You have no idea how hard their day has been, and how tough their lives are. 

As for me, I truly am sorry about the noise, and wish it could be a different way.

Really I do. 

welcome to the Polly show

welcome to the Polly show

There has been something going on with my eldest daughter Polly since she was a tiny baby. First it was reflux and eczema covering her face – related to reacting to dairy coming through my breast milk. Then came the multitude of food sensitivities which we discovered at two and a half.

A few months previous to that she stopped sleeping (both during the day and at night) and was waking up ten times plus. Even now she hardly ever sleeps through, and she is six next month. On top of all this she never outgrew the toddler meltdowns, and her violent outbursts have been steadily getting worse over the years.

Always something

Something has felt not quite right for a very long time, and I just knew there was more to this story than everyone else allowed me to think.

“She’ll grow out of the allergies, don’t worry”

“She’ll be so tired when she starts school that she’ll start sleeping all night, don’t worry”

“It’s all normal kids stuff, mine fight like cat and dog all the time, don’t worry”

The well intentioned, yet largely unsolicited advice, has been of little comfort to me over the years.

I’m kooky when it comes to my gut instincts, but they very rarely let me down. Last summer P had a whole bunch of gastro tests done, to investigate whether there was something medical going on, but every single one came back negative. It was a huge relief, I had major stomach surgery at 5yo and would do anything for my own kids to not have to go through the same. It left us not really knowing where to turn next though. So on we plodded with the best parenting we were capable of on no sleep, and a diet so wholesome that her teachers regularly comment on how envious they are of her lunch.

Last September I wrote this over on my GAPS blog.

“I’m going to set the cat among the pigeons here. What if her problems aren’t being caused by standard allergic reactions to food, but by a toxic overload and leaky gut syndrome? What if the super clean diet of cooked from scratch organic goodness she has been eating all her life is the only thing saving her from an ASD diagnosis? It’s no secret that ASD and food sensitivities go hand in hand. I’m starting to think that my hubby and I have been tearing ourselves into pieces looking in all the wrong places.”

wpid-img_20150509_103810.jpgChristmas saw my family in absolute dire straights. Hubby and I then went on a mission to try and turn it all around, and totally eradicate our own negative behaviour. Which trust me was bloody hard, but we didn’t so much as raise a voice over the two week holiday. We saw improvements but it didn’t work the miracles we were hoping it would. By Easter her sleep had gone to pot again, and her violent outbursts were getting more frequent and intense. To the point where we couldn’t trust her to be alone with her baby brother in case she hurt him. I conceded that what we were doing wasn’t enough and that perhaps my theory about autism wasn’t so whacky after all. Then I read this post by fellow blogger Reprobate Mum and alarm bells started well and truly ringing.

Our biggest red flags
– lack of empathy
– inability to read body language or communicate non-verbally
– toddler like temper tantrums
– obsessive about her likes
– has to be in control
– incredibly poor sleep

Getting the help we desperately needed

We are lucky to have private medical insurance through work, and jumped the queue massively to see a top specialist at The Portland Hospital two months ago. Dr. K assessed Polly and asked me a million questions, all the time being privy to her full range of emotions. Dr. K told me it would be high functioning, but there was definitely something needing to be investigated. I booked a follow up (again lucky enough to queue jump) and in the mean time had to complete more questionnaires, as did P’s school and our GP. We had the appointment yesterday and went through what the sheets said, and were asked even more questions. Dr. K also got to see the way P interacts with her little brother (little sister was left with the Grandparents).

To be completely honest I think Dr. K had made up her mind about Polly last time, she is a leading expert in autism and sleep disorders after all. The questionnaires seem to be just a formality. We were asked whether we wanted to contest her diagnosis of High Functioning ASD, and see another doctor to have an independent assessment done, but we declined. She was just confirming what we had already come to terms with. Now we have a diagnosis on its way, we can start to access the support our family so desperately needs.

It’s Official. She’s on the Spectrum. Now What?

Why am I writing this and telling the world that my kid is autistic? Quite simply because there is no shame in having a child on the autistic spectrum. P’s condition hasn’t been caused by anything that anyone has done, or could have done differently. There will be no guilt, and there will be no apologising. This is the way she was born and what my husband and I now need to do is start equipping her and the rest of the family with the tools we all need to live a happier life.

Attitudes will only change once people start talking about this stuff out in the open.

I keep hearing the term early intervention over and again, and because she isn’t even six yet I am very hopeful that we will be able to get ourselves to a much happier place fairly quickly. Hubby and I will be tapping into the support networks and parenting groups that will help us do this. You can learn more through the National Autistic Society.

A plea to trust your gut

I’ve also written this as a little plea to parents to trust their gut instincts when it comes to your kids. If you know something is up then fight for an answer, and do not allow yourself to be rail roaded into thinking that everything is fine, when you know in your heart of hearts that it’s not.

I’ve really tried to be positive and keep a lid on my bubbling emotions, even make light of the situation, but if I’m being honest my mood of late has been glum. The root of all trouble for my family is a teeny tiny five letter word, and the fact that our 4yo daughter hasn’t slept through the night in almost three months. Not once. Needless to say it is taking its toll, and since starting school things have gone from bad to worse. She wakes at various times for various things, there are no patterns. Sometimes it’s simple to meet her needs – she needs a wee, a drink or just a bit of comfort. Those are the easy nights. But sometimes she has spectacular tantrums triggered off by the smallest things, and it must sound to the neighbours like we are doing her serious harm. She can be up for anything from a few minutes to a few hours, and is often up four or five times.

The worst thing is that she is so tired in the morning yet insists on getting up for the day at the crack of dawn (somewhere between 5:45-6:15am). The 2-3 hours before going to school are nothing short of a battle, and early evenings are just as fraught. She doesn’t leave her sister alone, and is forever pinching her and snatching her toys. Bath and bedtime are a nightmare. The only saving grace is that she’s in bed by 6:30pm, which means hubby and I are able to have a few hours to ourselves. This past week however, her first wake up has been somewhere between 8-9pm which cuts into this time. It also means we go to bed on what I call red alert – falling asleep knowing we’ll be woken up any minute. Recently the little 20-week bubs living in my belly has started kicking furiously when we are dragged from our bed, meaning I find it really difficult to get back to the land of nod after being interrupted. Every day is a challenge, but the two I go to work are exceptionally difficult right now as my alarm goes off at 5:30.

We are no strangers to sleep deprivation in my house, but this has gone beyond a joke. It all started a few months after her second birthday, exactly two years ago. From 9 months old until this time she was a perfect 7-7 sleeper, but since then we’ve only had the odd week where she has solidly slept through the night. Apart from a three month period earlier this year when she was sleeping through almost nightly, and we thought we had cracked it. Unsurprisingly this is when baby #3 was conceived. We would have certainly remained a four person family for the foreseeable future otherwise. As every parent knows, sleep has a huge effect on the day that follows. A bad nights sleep will more than likely lead to a difficult day afterwards. Can you imagine what it would be like if every single day started at 6am (or earlier) and was preceded by a night ranging from pretty awful to absolutely horrendous?

We’ve read helpful parenting books, and sleep books gaining insights that have lead to a mild reprieve. We have our daughter on a very strict diet so she is not eating anything she is intolerant of. We limit the amount of TV she watches, and never let her watch anything that could disturb her later. We don’t read books with monsters or witches or dragons in them. She doesn’t drink too much before bed, and has a potty in her room. Her pillow is doused in lavender essential oil and her hair gets washed in a natural lavender shampoo. We have futilely done reward charts for weeks on end, hoping that she will finally see the correlation between doing the thing we want her to do and being rewarded for it later. We got her the famous Gro-Clock that other people swear by, which she totally ignored and asked to be taken away because it was too bright. We got her a dim night light, and eventually a portable one – which she now has in her bed. We have gone round and round in circles trying desperately to find a solution, the magic cure, but so far we have failed miserably.

Although most people mean well, I’m starting to get annoyed at throw away comments others make. Often insinuating that all she needs is more fresh air and exercise to ‘knacker her out’. Trust me she gets plenty, and walks more than most adults I know as we don’t drive. Ironically on some of the really big days out when everyone else’s kids are dead weights for at least 12 hours afterwards, we fare up even worse in the sleep department. People say that kids are so tired after they start school that sleep woes magically disappear, but naivety has never got me anywhere in life. I really don’t think that crossing fingers and hoping it will sort itself out is the right approach for something that’s having such a detrimental effect on my family.

It feels like somewhere between the broken nights, food intolerances, and sibling rivalry she has become a very difficult child. The crux of it is that you cannot use the same logic and reasoning on a child that has a sleep deficit of this nature. The meltdowns come too quickly, out of no-where and aversion tactics seem pointless. The easy going, nice natured baby and toddler she once was has been replaced by a sleep deprived mess. My heart breaks for the sadness in her eyes every single day.

Although cyber-sympathy can be comforting, I honestly haven’t posted this for that reason. My husband and I are at our wits end and I am hoping that someone reading this will be able to offer some useful advice – because they’ve been exactly where we are, have survived it and come out the other end. I would love to hear from you in the comments section if you think you can help us! Thank you in advance 🙂

When my four year old was a baby I used to get really annoyed with comments that friends with more than one child would make – such as ‘two kids is much more than just double the work’ and ‘you don’t realise how easy it is having one until you have another’. You get the picture? It used to really pee me off, but now I completely understand where they were coming from. I would never say things like this out loud to my one-child friends (as I still remember how it made me feel) but I do enjoy having a good moan to my husband and other mummies in the same boat.

My second daughter was a classic angel baby, and even during her most trying moments hasn’t been too difficult to contend with. She slept through the night at nine weeks (all by herself), fed well as an infant and always has a smile on her face. Unless she’s teething or unwell she’s one of the happiest little girls I’ve ever encountered. She doesn’t need constant entertaining and can amuse herself. At fifteen months my only gripe is that she is still a little too fond of the breast and isn’t displaying any sign of giving it up. Not a gripe really, I’ve loved being able to feed my babies.

In stark contrast her sister was (and still is) quite demanding. She had reflux from two weeks meaning feeds were difficult, and although she was fairly content she had awful tantrums from a very early age – and still does to this day. She didn’t start properly sleeping through until nine months, and is up for hours in the night at least a few times a week now. At just eleven months she pushed me away when I tried to feed her, telling me in no uncertain terms that she didn’t want my milk anymore. She flits between being a happy loving child and a sleep deprived monster – which I can certainly relate to on days where I’ve had just three or four hours sleep! Above all else she is extremely jealous of her sister, and the easier and lovelier the littlest is the more demanding and attention seeking she will be. She is really well behaved at nursery which pleases me, but also makes me sad because it’s clearly all for mine and my husbands benefit.

I have recently pondered back to the simple days when we only had one to consider, and wondered about the child my eldest would have been. In my fantasies she is perfectly behaved all the time and life is easy as pie. Of course the reality would probably be another story and I’m sure being an only child would have come with a different set of problems. I’ve been told that when it comes to small children it doesn’t get harder than having a baby and a toddler, and I take great comfort from this. As tough as these early days have been, I cling to the hope that they will both be better off in the long run for having each other.