Babies don’t keep

STOP THIS RIDICULOUS NONSENSE! YOU GO TO BED SO LATE NOW MUMMY IS TOO BUSY. IT’S GONE HALF 8 AND I’VE STILL GOT THE KITCHEN TO CLEAN!

This was what a screamed at my 3 year old son this evening while he lay in his bed whimpering “sit with me”

He had already gotten out of bed 3 times, knocked a shelf over on his sister and messed about during story time, so to say I was a little fed up is an understatement.

However as I went to leave the room, time slowed down. A line from a poem I once read crept into my head…

I’m rocking my baby, and babies don’t keep

I took a deep breath, my heart slowed, I calmed. I walked into his room picked him up into my arms and hugged him tight. “You scared me” he whimpered. “I’m sorry” I said.

I laid him down, tucked him in and stroked his forehead. “I love you, You are important, I am not cross” I said to him. He smiled. His sister laying in bed across the room seemed to settle with the words too.

I sat silently on the bed, listening to the fan in the room. Slowly but without protest both children fell asleep. I have told myself many times before, the best way to get my kids to sleep is to be with them, give them time, no rush just me. It seems I still forget this sometimes. 

I love this poem, reminds me whats important in life. I’m glad I thought of it tonight.

The author of this poem is Ruth Hulburt Hamilton

 

Silent Sunday 29th Dec 2013

A long hard week… kicking meningitis’ butt!

So its now Monday morning, I don’t really know much more than I did last night. Well I say last night but we only arrived on the ward about 4 hours ago. To read what happened last night see my post the worst night of my life.

Charlie is stable. His heart rate is down to about 150-170 depending on how he’s feeling and he’s off the oxygen. He is in a lot of pain and cannot stand any light, we have the blinds drawn and the lights off. The nurses have had terrible trouble doing his obs, its clearly hurts to be touched and he is terrified! They are being great though, reassuring me and my little baby boy.

Its surprising how quickly you get used to the hospital environment. the beeping, the monitors, the nurses, the doctors. I think to be honest I totally immersed myself in it. By time my husband got there, I knew exactly what each machine did/meant, what each wire was, what medicines he was on, how often, how much. In my head I was his nurse. I was of course also his mother, I kissed, sang , read and comforted him. But emotionally I needed to be his nurse. I could not let myself be his terrified, grief stricken mother, I would have fallen apart.

The doctors came to see us on the first of many ward rounds. The talked a lot, prodded and poked Charlie, took readings, read his charts. They very gravely told me that Charlie was very ill. That his blood had been sent away for analysis but they were convinced it was Meningococcal septicemia. I didn’t really find out what this meant until he was much better, but I knew it was bad.

The rash all over my beautiful baby was his blood, seeping from his collapsing blood vessels as the septicemia poisoned his body. The doctors told me all they could do was wait and watch, hoping that his body would fight, he would be kept on hourly obs, watching for signs of brain damage. The check his rash, checked if any of his limbs were compromised. Then the doctor asked if some of the rash was new, it was but I hadn’t realised this shouldn’t be happening! The doctors were worried, they told us he could be going up to ITU later, that although on the antibiotics it was still attacking him. They kept telling us he was fighting really hard and doing really well considering, but every time we responded with a smile they would say that he had a long way to go and was very poorly! I have recently found out that most children bought in already exhibiting the rash end up in the ITU and a high number leave the hospital with lasting damage.

Monday was a long day. Watching that horrific rash cover my baby more and more, every time I looked at him i saw more. He couldn’t eat or drink so was on fluids too, he was so weak, so tired. He was helpless, in pain, frightened and there was nothing I could do.

The next day or so were filled with worry. Not only was the rash still appearing but Charlie was unable to wee and was therefore swelling. By Tuesday he was so puffy he could barely open his eyes, poor little boy. The doctors were worried his Kidneys were not working properly and he was given diuretics to help him release the fluid. The doctors also said that his blood was no longer clotting, hence the ever increasing rash. I was pleased when they said he didn’t need a full transfusion but he did have to have a platelet transfusion. My poor little baby, its seemed as if his poor little body was just shutting down.

However even though on paper he seemed to be having more and more problems, my little Charlie seemed to be returning to me. Up until Wed all Charlie had said was mama, not like he normally would but like a baby babbling, he hadn’t been talking at all. But by tues evening/wed he was starting to say the odd thing, he also seemed to be awake for longer periods of time. He was giving me hope. He wanted to play and watch tv. He didn’t really play but the nurses made him some playdough and I made things with it for him to look at. Each day he seemed more bright, more awake, more Charlie.

Wednesday evening I decided for the first time to sleep in my bed in the corner of the room instead of holding him through the night. He seemed to go to bed Wed night like a normal little boy, He got tired, watched some tv then fell asleep. The nurses had also told me he was now down to 3 hour obs and they no longer needed to check his eyes (looking at pupil dilation for signs of brain damage).

Thursday morning. I will never forget this morning. He woke up, bright as a button. “I’m thirsty mummy” he said. I quickly got him a drink. He smiled at me…he smiled!!! This was the first time he had smiled all week. I have never felt so much joy in all my life. He was still swollen, but not as he had been. The rash was still there but had started to fade a little and was no longer appearing. I text my husband to ask what time he’d get there, I didn’t tell him how well Charlie was doing.

He arrived a little later, as he walked in Charlie said “daddy” and a massive beaming smile appeared on his face. I have never seen my husband look happier. We sat chatting to Charlie, chatting to our boy who only days previously had been fighting for his life, his body bleeding into its self, his organs unable to cope.

The doctors came and told us he had turned a corner. Off came the heart monitor, off came the sats monitor, they unplugged his drip! I couldn’t believe it. It all happened so quickly. As quick as the disease had gripped his little body, he seemed to have bounced back. Later that day he was allowed out of his room and into the playroom. He couldn’t really walk properly but couldn’t wait to play. A little later he was moved to a ward. Suddenly I had others parents to talk to, other things to look at. Charlie seemed to much prefer the ward and he was finally starting to talk to and interact with all the nurses. My little star.

After some concerns over His ability to walk and a scare with his rash reappearing (he was still having clotting problems), we are now home and dare I say it fully recovered. I cannot believe how lucky we are. Charlie is still anemic and gets tired very easily. He had still got to undergo tests but at this point no lasting effects are expected. His skin is still mottled with the scars of his rash and he has lots of large bruise like patches and scabs. But all in all, he is better, he is Charlie, he is home.

I am so thankful for whoever was looking after Charlie, the nurses, the doctors, the well wishes, the prayers, god! Whoever played a part in saving my boy, thank you. I feel like I have been given a second chance. After giving birth to Charlie I suffered PND and did not form a bond with him, in fact I have barely any memories from his first year. This is in fact another post I have in draft that I have been trying to finish for a long time. Although I have over time developed an amazing bond with Charlie, I feel our time in hospital allowed me to have with him what I and he missed out on when he was a newborn. I have to take something positive from it. I got to care and nurse for my baby.

To anyone reading this I want to get through to you that ours in an exceptional case. We have been told by doctors that Charlie is very lucky and some said they have never seen a recovery like his. This is a happy ending but unfortunately it is an uncommon one. In cases of bacterial meningitis 1 in 10 will die and a 3rd of survivors are left with permanent damage including loss of limbs, brain damage, blindness, deafness and learning difficulties. Please make sure you know the signs. The rash is the last symptom to appear. Its is often called the grave rash, as the grave follows the appearance of the rash!

Here are the symptoms you need to look for;

• A very high temperature with cold hands and feet
• refusing food/vomiting
• fretful, dislike of being touched
• floppy, hard to wake.
• rapid breathing/grunting
• unusual cry
• dislike of bright lights.
• stiffness in the neck (check by trying to get child to put their chin to their chest)
• Convulsions
• Lastly the rash. Blotchy skin and/or the appearance of a red/purple rash that doesn’t disappear under pressure (do the glass test)

These are the symptoms in babies and toddlers, for more information please see www.meningitis-trust.org

Worse night of my life….

I’ve been trying to write about this for a while now, I’ve been struggling to find the words, the strength and the time. Our world was rocked so tremendously recently yet to the onlooker it appears to have left now physical scars. You are probably wondering what an earth I am talking about, so let me start at the beginning………

Sunday 2nd June about 1pm

Sitting watching tv with the kids and my little lad, Charlie (2.5yrs) starts wobbling towards me crying. Oww oww he’s saying in between tears, he’s also walking funny. My immediate reaction was that he was trying to poo, he sometimes suffers constipation and often walks that way when he’s trying to go. I picked him up to cuddle him and relaised he felt a little warm. I cuddled him for a while expecting him to go to the toilet, but he didn’t. Over the next hour or so he got really sleepy, still crying and still hot. So I made him a little bed on the sofa and laid him down.

“are you poorly little man?” I said to him. He didn’t reply, he looked quite sad, he then fell asleep. I text my husband to ask how he had been in the morning as I had been out taking my eldest to the cinema and he was now at work. He soon got back to be saying he had been fine, running round in the garden all morning. I told him he was now poorly and lying on the sofa and sent him this picture…

Charlie spent the rest if the afternoon in and out of sleep, crying every now again saying ow. He seemed to have a temperature, although I had no thermometer to check for sure but as a mum you can usually tell. I hate it when my kids are ill, i’m sure all mothers do. I’m a bit of a worrier so keep them close when they are. Due to this charlie stayed with us for the rest of the evening, with no improvement. I then took him up to bed in with us and cuddled him to sleep.

Sunday 2nd June about 1am.

Charlie woke screaming, unsettled, not making any sense. He was both floppy and jerky all at the same time. He was babbling gibberish. He was hot, very hot. Amongst the babble I made out the word drink so got hubby to get up to get him one. He seemed to be getting hotter by the second, I sat him up and removed his top, I needed to cool him down.

For a second I froze. Guy I said, stop, as he was about to leave the room to get a drink. There was a rash, starting to appear on his chest, red and purple, dark… I grabbed a glass of the bedside table and pressed it against his skin, no change. “Get me a phone, quickly” I said to Guy. How I was able to calmly say that I will never know.

Shaking a rang 111 (nhs direct). Guy took Charlie as he was still crying, still confused, still getting hotter. After answering some questions the lady on the phone said the paramedics were on their way to us, told us not to let him get cold and take him downstairs and put the lights on. I have honestly never been so terrified and full of adrenalin and yet so calm and controlled in all my life.

The paramedic arrived, by this time Charlie was floppy, still conscious and the rash was spreading all over his body. The paramedic took one look at him and radioed in with the words “we have a hot one, repeat a hot one”

He then attached a stats monitor (measures blood oxygen levels), I don’t remember the reading but he put him straight on oxygen. He then added a heart monitor and took his temp. It was 40.7 I will never forget that, I have never know a child that hot. He then told me very seriously that Charlie was very ill and he needed to get antibiotic into him straight away.  I agreed and he did it. He then told me that an ambulance was on its way and we needed to be ready to go the minute it arrived.

The ambulance arrived and I carried my poorly baby half naked covered in wires and a horrific rash into the back. I said goodbye to my husband as he had to stay with the girls and off we went. We arrived at the hospital after a surreal journey spent telling charlie about the ambulance (not that he could hear/understand me) and making small talk with the paramedics. It wasn’t as I imagined the doors opened to a quiet place with a secret looking back door, we went through the door which lead straight into the ER. There was a team waiting for us. I laid Charlie on the bed and they took over. More monitors, more drugs, lots of questions and then we wait…..

He had a heart rate of 210, at the time this meant nothing to me but I now realise it was about double what it should be! We had to keep calling his name and keeping him conscious. If he started to loose consciousness/responsiveness the anesthetist was waiting beside him to intubate and rush him to the ITU (intensive care unit) I stood there, in my pyjamas, suddenly very cold and sick, my head swimming, I felt like I was going to collapse at any moment. But I couldn’t, I couldn’t leave Charlie. The doctor asked me if I’d like to lay on the bed to comfort him. I think she knew that if I didn’t lay down I was gonna fall down.

4am.

They decided he was stable enough to go onto the ward and they sent the waiting anesthetist away. I stayed on the bed, they wheeled us to the ward. We went into a private room, next to the nurses station. I looked around so many machines, so many wires, so many noises…. my poor little boy. Everything in the room beeped, every time he moved some alarm went off. A kind nurse came into the room, I have no idea who she was, I know it was one we got to know but I cannot remember who. She told me she’d be looking after us, made me a cuppa and got me some food. I think it was then that I first heard that word said to me “you understand we think he has meningitis”. “Yes” I replied, confirming my worst fear.

After calling my husband to let him know what was happening I lay down next to my boy, my poorly poorly boy. I didn’t cry, I couldn’t. I wouldn’t allow myself to take on the enormity of what was happening, I just stroked my baby’s hot little head and waited for the nurse. Charlie was frightened and confused and was on hourly obs so it was gonna be a long night……..

Dear Mum

Today is my mum’s birthday. I won’t say how old she is, she wouldn’t thank me for it. I’ve been racking my brains trying to think of something really special for her birthday, I really wanted to spoil her this year, I’ll tell you why…..

My mum has been my rock. Things have been tough recently, really tough. I’m finding juggling 3 children, my business and my home really difficult. Things just keep getting on top of me and I feel like I have no one to turn too. With hubby working long hours, I find myself phoning my mum and she never doesn’t have time for me.

 

So I have decided to write a tribute and a Thank you to my mum….

Dear Mum,

Thank you. Thank you for the endless phone calls with me discussing the same problem over and over again. For listening to me when I’m being my own worst enemy. Thank you for understanding that I like to parent differently to my siblings and for not trying to change me. Thank you for the babysitting, allowing me to work. Without this we could not afford childcare. Thank you for lunch, every Wednesday and most Saturdays, we must add so much to your shopping bill each week. Thank you for the open house, the cup of tea, the numerous yummy things in your cupboard. Thank you for allowing me to feel like the child again whenever I step through your front door.

Thank you for the hard work. Thank you for the tree cutting, the shed building, the concrete laying, the kitchen scrubbing, the washing up  and all the other help you have given us over the past few years. You truly are selfless, helping us when we are in too deep or simply have no idea what we are doing.

Thank you for your acceptance. For the love and understanding you show Piper. Never once have you questioned her Autism, just tried to understand. You have adapted and learnt, allowing her to feel safe with you. Never once have you scorned her behaviour or judged our family. Family member’s like you are exactly what children like Piper need. You love her unconditionally and have taken time to learn and understand her condition, for that I am truly grateful.

Thank you for raising me, allowing me to have the amazing childhood I had. For making everyday summer and teaching me that being happy is worth for than money or wealth. For teaching me to cook, which I love to do. Thank you for teaching me to parent, gently and with understanding. I only hope I can be as good a mother to my children as you are to me.

Thank you xxxxx

Mum playing with Piper on holiday in Menorca.

Me, mum and my sister on my wedding day.

Me and mum on my hen do.

Day to Day 9th April

Today has been a sensory day.

I don’t mean that we have been doing sensory activity’s, I mean that today Piper’s sensory difficulties have been predominant  Piper’s sensory awareness is probably, alongside communication, her biggest day to day hurdle. One of the sad things about going through diagnosis is you really have to look into what your child’s biggest problems are. I don’t really enjoy this, I prefer to discuss her strengths and often find myself almost defending her to myself when having to describe these difficulties. However one thing it does do is highlight ways you can help you child to overcome their challenges in life.

Anyway for Piper one of those challenges in her senses. Now I say today has been a sensory day. What I mean by this is Piper is showing me signs that her senses are causing her a problem. Now I still don’t know exactly what causes this, I’m not sure if its a heightening or a dulling of her sense’s, I’m not sure if its too much sound/light/touch or maybe too little. But I do know, or I have learnt, when these things are bothering her, let me explain…

Today Piper has not been able to control her volume of speech and sound, she has also been playing with her speech a lot today. Saying ‘funny’ words over and over, giggling a lot and making a lot of sounds. She has also had trouble listening to anything today. She has said “what?” to me a thousand times today and when I tell her that I’ve already repeated myself 3 times, she tells me she can’t hear me. (we’ve had her hearing checked by the way)

She has been running a lot, she likes to run. Back and fourth from one side of the room to the other. She was doing it just before I took her to bed for a bout 10 mins or so, then she just stopped and I took her to bed. Now I believe that this is what is often refereed to as stimming (if I’m wrong or have misunderstood, please correct me). Her doctor described it as a way of regulating herself. I often find the running, or ‘my running’ as she describes it, happens a lot more frequently on sensory days.

She has needed to touch, she has rubbed, licked and kissed a lot today. I sometimes find it all a little intrusive and annoying at times, then I remind myself of how I felt before she was able to do this. When she would not kiss, hug or touch me. When I almost felt like my little girl didn’t want to be near me. I know know different and am starting to understand. So I push that feeling of annoyance down and let her hug and lick, then I hug and lick back, then we smile 🙂

She has found it hard to stick to one task/game today too. Flitting from one thing to another but not really doing anything. The one thing we did do that held her attention was baking, she loves to bake. In fact she’s very good at it. We made biscuits  we had to rub the flour, squish the dough and roll it out. Lots of work with our hands, perfect for a day like today.

This evening once the little ones were in bed I went to do the washing up so set up a bowl of water for her too. She loved it. I was hoping it would help. The water got poured from containers, splashed about, dripped onto the floor and washed all around. She had a lot of fun, as you can see….

 

Also this evening Piper decided to do some photography. I love it when she does this. It’s like a little glimpse into her mind. She seems to like angles and capturing people in different ways. I still think this is all to do with her sensory day. She needed to hear things, touch things, say things, smell things and see things in as many different ways as she could… and I think we got part way there.

Tomorrow we are going to the zoo for the day. Piper is very excited, she will take her little camera with her to photograph the animals, she will read every sign, she will learn about every animal. She loves the zoo. I however am a little nervous, for those of you who haven’t read my blog before here’s what happened last time we went to the zoo!

Wish me luck. I leave you with some of her beautiful photography. See you tomorrow…..

    Her point of view

 

close up of the play mat, love the texture.

Me and Elena

Playing with facial expressions

sticking out her tounge

 

Day to Day 8th April!

Wow, ok so my day to day plan didn’t go so well, eh? 4 days in and I end up skipping a couples of days. Feeling a bit rubbish about that to be honest. It sounds really lame but I have honestly not been able to sit down at the computer and write.

Weekends are hard for us, my hubby works most of the weekend you see. Especially this weekend, it was the Grand national which as a bookie means his busiest day of the year! For those who aren’t from England or who don’t know/care about horse racing, it’s pretty much the biggest (and most controversial) race of the year. Any hoo… no hubby at home at a time when most people play happy family’s often leaves us with very little to do. Most of our family members are busy doing their ‘weekend’ stuff and most friends have their hubby’s/partners at home. So it tends to just be me and the kids.

Don’t get me wrong, I kinda like our ‘just us’ time, mama and her baby bears. But it is hard work, the whole lack of structure thing (as I’m rubbish at it) plus the whole where can I take three children on my own where they can’t escape/upset anyone/destroy stuff thing? I am slowly getting used to the stares when Piper meltdowns or demands something of me at 1000 decibels  while I try and stop the boy punching his baby sister in the face! (yes this has happened ) But it doesn’t help. I like enclosed places where I know I can’t loose anyone but unfortunately for Piper this isn’t always the best option as enclosed often means busy, and busy doesn’t work well for her.

So what did we do this weekend? Well we watched Cars! Shock horror, 4 times in total! (plus twice more today)

I should add if they every find me rocking in the corner repeating “Lightning McQueen” over and over again, you’ll tell them what happened to me yeah?!

Luckily the sun came out and we played in the garden most of the time, the garden is good. For all the kids. For Piper the garden is open, it is free, it has texture, so much texture, she can wipe, smear, throw and squish to her little hearts content, and she does. Plus the nice thing about this time of year is although the sun is out its not to bright. Which is great because once we get that’s really bright summer sun, we have a whole new set of rules for going outside! Rules set by Piper that is, here they are;

• NO SUNCREAM, under any circumstances  this causes her an untold amount of anxiety and possibly pain.
• Sunglasses must be available at all times.
• There must ALWAYS be a paddling pool out (I like this one)
• All meals must now be eaten outside.
• Snack must be an icecream (in a cone)

I love the way she embraces the summertime, even though the heat and bright light cause her sensory related pain. In fact writing this has made me really look forward to the summer, if it ever arrives!! Once again for those of you overseas, we had snow last week, snow!!

Well I’m off to enjoy a glass of wine as I think the little ones are all asleep now!

I’ll try and write again tomorrow, if you’ll read. I’d love to hear what you think by the way. Is there a certain aspect of our life you’d like to know more about? Have you had enough of me telling you we’ve watched Cars?

Here’s a picture from the weekend. See you tomorrow…..

 

Day to Day 5th April

The 3di test……

Today we sat the 3di diagnostic test for spectrum disorders. Interestingly it isn’t used to diagnose, more to give evidence towards diagnosis, which is done by the consultant, well in our case this is whats happening.

So today I thought I’d write about our experiences of this. Today’s post will be about me and my hubby as the children stayed with their Nana all day. Maybe someone who is starting their diagnosis journey will find this and it will give them some insight, maybe you will relate with how we felt, maybe you will have some advice for us….

So we dropped the kids off at 9am, an early start for the school holidays. Then off we drove to find the children’s centre and meet our nurse practitioner who deals with our family.

The test was as expected, long and detailed. Basically what happens is they ask you lots of questions about your child and their behaviours and experiences. We also had to rate the severity of some of her difficulties and pick things from lists. All the information is typed into a computer program. In total the test took about 3 1/2 hours and I am pleased to report there was plentiful tea and coffee on offer.

To be honest it was a great experience, talking through all of Piper’s strengths as well as her weakness’s had us almost welling up at points with pride for our wonderful daughter. It helped us to see a bigger picture of Piper as a whole person, not just her autistic aspects, but also to see that those autistic aspects were part of her as a whole, if that makes sense. In other words, without her autism, she wouldn’t be Piper.

Sometimes I found myself talking about something that sent a chill through my being. Talking about how others perceive her, or have in the past upsets me sometimes, our experiences have not always been positive. Also talking about her lack of stranger danger and separation anxiety, the fact that we have lost her on numerous occasions  This still terrifies me to think about, what if next time we don’t find her?!

At another point though we found ourselves laughing. Not laughing at her, or at her behaviors. But laughing about her endearing personality. She really is a little corker my daughter and if you give her the time, understanding and patience she needs you will meet one of the smartest, funniest little girls ever and you will fall in love.

It was also one step closer to a formal diagnosis, although we have pretty much been given an unformal one already. Not saying that we NEED a diagnosis, after all to us she is just Piper and we accept her for who she is. But in order to access some of the extra help she may need and in order to educate our family members we need a diagnosis.

I am still met by both strangers and family members with such helpful comments like:

“are you sure she autistic”

“what makes you think that”

“oh, she’ll grow out of it”

“but she can talk, so she must only have a little bit of autism”

None of these things are helpful, they all make you feel like your being challenged about your own child. Because obviously someone who’s never met her or see’s her once a month knows much more than me about any possible difficulties she might experience on a day to day basis!

Sorry, went off on one there a bit.

So today was an interesting day, it was a step forward. But also me and hubby got to spend a few hours together without the children, this very very rarely happens. With 3 under 6 its extremely hard to find a sitter, especially one we trust. Plus with a baby that doesn’t sleep very well and Piper not shutting off till nearly 10pm each night, those few hours today were like a little holiday.

Being a parent is a 24 hour job, especially when they’re young. Being an autism parent can be 24 hours then some. This can have its toll on adult relationships. But I am not complaining, I wouldn’t change my babies for the world, its hard work but as with most things in life, the harder you work the better the result. we work bloody hard and my babies rock!!

Here’s a little pick of me and hubby on our wedding day, just being us. See you tomorrow…….

Day to Day 4th April

Today was a bad day.

Today was a day I wish I didn’t have to write about or be honest about. But I am going to anyway, I started this project and I intend to go through with it, I will write about the good days, the bad days, the average days and the extraordinary days, I will write so that you can read.

So today we had no plans, just a day at home. No structure, no routine to follow, just chilling and playing at home with the kids. To a lot of people this may sound good, it wasn’t!

So we started the day as usual curtains shut, lights dimmed. The morning’s of this school holiday have become increasingly relaxed, this hasn’t helped. Hubby went off to work and I got asked ‘where are we going today?’ No where I told them, we can play at home today.

Already sat watching ‘cars’ I knew they’d be ok until it finished. Once it did the day went downhill from there.

The trouble I had was simply this. Elena, the youngest at 14 months, is going through a clingy stage, not really sleeping well and generally wanting to be stuck to me all day. This is getting me a little frazzled now. I’m not sure if its caused by or is exasperated by the fact that the boy is going through a stage of hurting his baby sister at every chance he can get, and I mean EVERY CHANCE. If I put her down and turn my back for a second he will leave what he’s doing and fly across the room to attack her! It is driving me nuts. So this kinda sets the scene for my day, I cannot get anything done, I can’t even go for a wee without one of them screaming.

Piper unfortunately doesn’t seem to play with toys, or if she does its very rarely and for a short amount of time. I can’t really explain it but she just doesn’t seem to be able to entertain herself, even for a short period of time. I’m not sure if this is Autism related or Piper related, but it can be difficult. Without being set a structured activity or place to go she is lost.

Films helps, well the same film over and over again. But I worry about her watching the tv all day. She also asks questions all the way through the film, once every few minutes or so. The same questions every time she watches it, and I am expected to give exactly the same answers or I am met with screaming. To an outsider this may seem like spoiled behaviour or the child playing up. But I can assure you she is not. In her world this is part of watching the film, she asked these questions when she first watched it and I gave answers, this is like a ritual to her and part of her enjoyment of the film. Its good for her too as a lot of her questions are about the characters and their relationships to each other or about social rules that we understand and take for granted, These are the things she doesn’t understand and they confuse her, she needs to make sense of them.

So today with me being frazzled and piper being unstructured and unhappy, we fought and argued all day.

I hate days like this as I seem to loose my understanding and tolerance towards her and I know this is unfair. I became what I call a shouty mama today, and I am not proud. This lead to lots of upset as she desperately tried to take control of situations to bring some structure into her world, Everything I did was wrong,  drinks in the wrong cup, wrong coloured pants, didn’t answer her questions (that she asks me everyday) with the correct scripted answers.

Today was a bad day. Not because her Autism was any ‘worse’ that it normally is or that she was badly behaved. But because external factors and lack of structure made her world difficult to understand for both of us. Days like this really highlight to me the importance of Autism awareness.

Had I have set a structured routine of activities today maybe she would have been able to cope with my lack of attention due to the other children needing me more. Maybe if I’d counted to 3 and not shouted at her for asking annoying questions or sitting in my personal space, she’d have had a happier day.

But I didn’t. I wasn’t very autism aware today. I was tired. I have apologised. She has actually gone to bed really well bless her, in fact they all have.

Tomorrow we have structure. Tomorrow is a new day. Tomorrow we sit the 3di diagnostic test with the consultant!

See you tomorrow……

Day to Day 3rd April

Well its day 3 of Autism Awareness month and we spent a lovely day with the mother in law. I know, your thinking mother in law, good day, one sentence!! seriously!! I’m quite lucky, she’s lovely bless her. After all she’s an Autism parent too, she just didn’t know it.

We don’t know for sure as he’s not diagnosed but we’re pretty sure that hubby (Piper’s daddy) has Autism too, something we have come to believe as our journey with Piper has evolved along with our knowledge and understanding. Probably over this month I write about his interaction with the children and you may see what we mean.

Anyway we have had a lovely day today, all the kids got up well and we went of to a children’s soft play barn for the morning. I teach baby yoga classes and was working this morning at the barn, so mil was there to watch the children. Both the older two prefer to play alone and always play with the same things in the same way every time we go. I kinda like this, its comforting. I always know where they are, what they are doing and that they are happy. Familiar is good for them and for me.

Today I was really proud of Piper though as she had found another little girl to talk to. The little girl was clearly younger than Piper but nether the less, they were interacting. The interaction was sporadic, and often I noticed Piper was talking and the little girl was no longer near her. This is something Piper has always struggled with, she doesn’t seem to understand the correlation between proximity and communication. However this was one of those moments that I know all autism parents will understand. Those small battles. Maybe they made a friend, maybe they ate a carrot, maybe they said a word. For autism parents what most others see as normal everyday events can be massive milestones to be celebrated. This was one of those.

We returned home in the afternoon to watch Disney Cars. We currently watch this film AT LEAST twice a day. Once again familiar is good, Piper (and Charlie) like that they know whats going to happen, that they understand the story, that it is familiar. This seems to bring comfort, even if it does drive me a little potty at times.

Unfortunately though Piper did experience a few toileting accidents today. This often happens when we do a lot. I’m not sure if its distraction or over stimulation but she struggles with knowing when to go to the toilet so is often a bit late. I almost feel bad for writing about this as I understand this is a personal problem for her that she may not want shared with the world. I just hope that she understands why I’m telling you, so you can see the challenges she faces on a day to day basis.

Its 10:30pm and she’s just gone to sleep, tomorrow is a new day and I hope its another good day.

See you tomorrow……