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……

Day to day! 2nd April

So those of you who saw my previous post will know I have decided to write a diary of our day to day activities and experiences as a family touched by Autism. I will be doing this everyday for the whole of April to honour Autism awareness month. The basic idea behind it; to give others an idea what Autism means to us, how it may different from what they presumed or even experienced. How Autism is as complex and individual as the people who have it.

So this is today……

We started the day as we normally do, in darkness. Well dim light anyway. For us throwing open the curtains to see the morning sunlight is a no no. For my daughter bright lights can be extremely overpowering, her eyes are very sensitive to light, so for at least the first hour of the day, the curtains stay shut.

In fact today was a little different as the kids slept in a bit so breakfast wasn’t done in the right order. Piper is used to getting up last, so is used to coming down stairs to find her brother and sister have already had their breakfast. Today Charlie, her brother, slept in too. Piper decided that she would not come downstairs until Charlie had eaten his breakfast, so that’s what she did, she just waited upstairs until he was done. There would have been no point at all trying to convince her otherwise, we have learnt this the hard way. Once she has a set rule/routine in her head you cannot change it or this can cause her whole world to come crashing down. So this morning we had a slow start.

The rest of the morning was pretty normal, they all watched TV, played with toys and Piper played on her DS. As I mentioned before, life can be pretty normal sometimes 🙂

After lunch we went to a mums group held at a local pub. It was the first time we had been so Piper was asking lots of questions. We had a good time. At one point I noticed Piper had stopped talking normally and had begun using her ‘baby voice’. This is usually a sign that something is starting to bother her. Maybe it was too bright, too noisy or too busy, I have no idea. But a found her a quiet corner and let her play her DS again.

After the group I needed to go to the supermarket, no this can often cause a problem, but today it didn’t! All three children were really well behaved, well apart from Charlie putting his baby sister in a head lock a couple of times while sitting in the trolly!

For dinner we had a roast, Piper had requested it while shopping. Now piper has an interesting relationship with food and I’m sure your going to hear a lot more about it. She wanted the Yorkshire puddings that come with it, they are one of the foods she will eat. My husband often giggles at the dinners I serve her as they look like nothing. On her plate she had 2 pieces of parsnip (she won’t eat these) a corn on the cob (she massaged this with butter for about 15 mins) and a very small piece of ham (this was not touched).

In the middle of the table we had a big plate of Yorkshire puddings, which the kids can take if they want them. Piper had two but decided today that they also needed massaging with butter, so didn’t actually eat anything. This worries me. As you will see from my posts as the days go on, she doesn’t eat a huge amount.

The day finished with some running, Piper likes to run from one end of a room to the other, or from door to door if there are two doors in the room. This can gone on for a very long time. I’m not entirely sure why she does this, we just accept that she does.

This to me is where the day ends, as once we approach about 7pm we see a new Piper. She doesn’t wind down as the day ends, she winds up! We call it her hyper time or manic time. In fact she’s still awake now (9:30pm), and probably will be for a while yet. She’s in her room, in the dark, looking at books and fiddling with toys. Once again something we’re not 100% why she does this, but she does.

So that’s our first day. Its been a good day. No meltdowns, no tears, a good day.

Was it what you thought?

I would love to hear what your day was like.

See you tomorrow….

Autism awareness

Today is Autism Awareness day.

This time last year I had never heard of Autism Awareness day/month. In fact all I knew of Autism was a few documentaries I had watched and a niggling feeling I was having about my eldest daughter. Little did I know that I would spend the whole of that summer Googling, reading blogs and talking on forums, all related to Autism.

My Eldest daughter has always been a quirky one and since about the age of 3 I had realized that she was very different to her peers. I also knew the behavior she was demonstrating was not of her character, therefore something was causing it. It was about this time last year that I first called the health visitor and asked for a developmental review, she was 4 years old at this point. This started our diagnostic journey, which has been a long one. In fact it still hasn’t finished. Our consultant has said she has enough information to diagnose now but would like us to sit a diagnostic test called a 3di, we are doing this on Friday.

But I don’t want to write about our diagnostic journey  this is Autism Awareness month, therefore I would like to try and make people aware of what Autism can be like, how it can be just like you and me, how it can be completely different, how it can be challenging  how it can be amazing. So I would like to introduce you to my daughter, Piper, she is 5 years old and about to be diagnosed with Autism. As part of Autism awareness month I am going to write about our day, every day in April.

Why? you may ask. To show you, to make you aware, to surprise you and to be honest with you. I hope that if you know very little about Autism that my words will help you discover it. Because by not knowing about Autism and those who have it you are missing out on something wonderful……

I will be using the tags #autismawareness and #daybyday if you would like to join in.