Hmmm Holiday time…

 

Holidays are a tricky thing in this family. Mainly for Madison! You see our weekly schedule gets completely mucked up and we need our schedule, I love our schedule, our routine that’s how we survive and stay sain at this house. Well most of the time. Schedules, routine and being organised these are key to the way we live.

 

It took Adam a long time to get in to the swing of it. He likes to be spontaneous as do I but with Madison, and Jaimee too, if the routine gets mucked up or there are last minute changes be prepared and be very scared to pay the consequences. It can throw us off balance in a big way.

 

So holidays, and I do like holidays, it gives the girls a very well earned break and they do need it and it also gives me one too. The thing is there is only so much time you can fill in the day without completely exhausting yourself and trying to get the kids to use up the majority of their brain power.

 

At the moment Adam is in Darwin for 10 days and Jaimee, the big red head has gone to have a sleepover at Auntie Beks house with the little red head, Scarlett. So it’s just me and my Madison girl.

Being the 1^st day of the Easter holidays, I thought Madison would sleep in as there was no school today, but I was wrong, she was up earlier than normal. On a school day I have to drag her out of bed with sleepy eyes and lots of mumbling or screeching “No school today”, “No school today”!! In she waltz’s to my bedroom at 5.00am with a very loud little TV asking “mummy you asleep” and then “ahhh there you are”.

 

It turns out that today I am playing the servant girl to the little princess who is making her tedious demands all day long, every 5 minutes it seems. I would just get started doing something and their will be a “mummy, mummy, mummy, mummy” until I answer or go to her. Most of the time she likes to hear herself repeating things over and over, other times it’s just about getting what she wants.

We started off ok, Madison had 3 long showers and then a bath in a very full to the top bath tub. All before lunch time! The bathroom did get flooded and bless her little heart she did try to mop up all the water using every single towel available in there. I was feeling good too about having all my washing clean, dry, folded and put away. One more extra load to do now, what’s a bit more washing anyway.

 

So there is a bit of drama that happens when we get out of the shower, bath, pool, ocean which ever of these wet places we are at. Getting dry is particularly tricksy. Especially the hair, she doesn’t want you to dry it for her, a sensory thing with her head, but then all hell breaks loose when the drips start to fall. So here is how the rest of our day went.

 

The computers not working! Crap, crap, crap.

Our modem is on its way out and every now and then the internet shuts down. This is the biggest thorn in my side, I tell ya! It takes me about 5 minutes to get it working again but there is no explaining this to Madison. She just let’s rip.

Meltdown with extras (scratching, banging the laptop, banging the little TV etc.) then lots of sorry mummy L

Where are you mummy!

Dog barking, Shut up Indy!! Madison would say.

Wanting a choc crème, Madison named the little bite size sweet William chocolates, chocolate crèmes; it is a Gluten and dairy free chocolate bar. Where are your manors, Madison!

Can’t find Angelina Ballerina in the favourites on her laptop, big yelling session! Finally I found it, thank god.

Where are you mummy!

More choc crème, where are your manors, “please mummy darling”

There was no spare plug hole near the laptop for the ds game to charge up, cracked it big time! She needs to have all of her gadgets going at the same time and charging.

The dog barking, Shut up INDY!!! Madison's words.

Where are you mummy!

Making me watch parts of Flushed away, holding my face with both hands at the tv to make sure I’m watching it.

Indy barking again, banging the laptop and chucking the mouse!

Weeing in a cup, not enough cup, too much wee! Damn more washing!

Another shower

More dripping hair

The TV I was watching was too loud, even though she was wearing headphone at the computer and had the little TV up to the highest volume. She wanted the big TV sound off.

I turned the TV off and went to the other TV in my bed room and this upset her more. A lot of tears, what will make me happy, I want my daddy. Not so much yelling this time and then sorry mummy and go away mummy. She is getting tired now, thank you very much!

More choc crème, where’s your manors, Pleaseeee mummy darling!

Then of course it bloody rains. For a kid that spends most of her time in water you’d think she would love the rain, not!

Most days I can cope really well and then there are random days that not even fairy floss can fix. I love fairy floss! After awhile the constant badgering can and will grate on your nerves till they are split at the ends. Today seems to be one of those extra long days….

 

Best thing I can do is just switch off, give myself a moment to breathe and have a cuppa tea. Or hide in the toilet for 5 minutes, what ever works! I know the day will eventually come to an end and tomorrow is another day. I do pray that tomorrow will be better than today. If it’s not, I know it can’t last forever and I will just take it as it comes.

So why do I do it, give in and become the servant girl? Because some times you just got to pick your battles! I don’t do it all the time, I just have to judge were she is at on the day and I do what I can to keep Madison from escalating in to full blown meltdowns. It can sometimes take a ½ a day, a day or even two days  to come down from a, we have reached critical point of no return meltdown. So avoiding those situations is how I play my cards.

A meltdown for Madison is when she feels she has lost control of a situation; sensory overload happens with visual, noise and touch and she has trouble making sense and processing what is happening around her. She will scream, cry, kick, punch things, hit, and scratch, bite, throw things, throw herself on the floor and self harm. These don’t all happen at the same time. It can get pretty intense.

People say it like a tantrum; I assure you there is a difference. To watch it happen if you didn’t know her, it probably would look like a tantrum or you may think she is having a really big mental and needs a good smack. I have actually had a person tell me that’s all she needs, is a good smack. Some people are just wankers! They can’t help it.

Being Autistic things are very different. Life is hard for her, she look like a typical little girl but she has so much more going on to deal with and she is misunderstood by many. Don’t worry though; Madison can still throw a good tantrum, we just know the difference.

Even though all of these not so nice things happen in the day and were not all butterflies and daisy moments. We move on pretty fast from the difficult moments. There are still times in between for laughs, cuddles and kisses with I love you’s. We are really fortunate and grateful that Madison is a cuddly kid, on her terms though. I must admit I am a bit in your face with the affection.

Madison is getting better with her self control when she has a meltdown. It depends on what is happening at the time and whether it is a major or minor one. We are so proud of her. The one thing that is the most heart breaking of all is that this little girl is very remorseful afterward. She knows that she has done the wrong thing but in the moment, sometimes the control is not there, yet! Madison will always say she is sorry and you can see by the look in her eyes and her face how upsetting it is for her as it is for me to watch my girl go through all of this.

It is an emotional rollercoaster but that seems to be how we roll. Madison has hit puberty so we are in for one heck of a bump ride, me thinks!

So bring on a new day I say and let see what that will bring, hopefully a bloody rainbow J

Oh, I forgot to say Happy Easter! Have a lovely holiday with family and friends.

 

Till next time

Steph

x

 

Grade 8 Class Representative

 

 

Jaimee 12 years of age

It was an exciting day for the J girl yesterday. She received her badge at assembly for grade 8 class representative. Although I have a feeling I may have been the excited one. I was getting mixed messages about whether or not it was the done thing for the parents to go to the senior school assembly. Her words “No other parents ever go but you can come if you want” in a flat tone but emphasis on the EVER.

So I went.

With the promise of not whoohooing to loudly! I did stand up and take photos though much to the dismay of the red head, only because her friends all turned around and looked at me and saying “is that ya mum”. And I clapped really really loud J, secretly I think she loves it when I do the silly mum stuff! Ad is always teasing her and threatens to walk around the house in his orange undies when her friends are over. You should see her face!

We love to stir the kid up, hehe!



Doctor Hurley and Mr Irvine presenting Jaimee with her badge

Ad and I can never quite work out how have been blessed by this wonderful kid. See, we were both ratbags when we where at high school, well a lot of the time we weren’t at school. Apparently Ad would hitchhike to the beach and go surfing and my friends and I would just hang out at whoever’s parents were at work or go to the mall. Don’t tell my mum though, don’t think she knows, yet!

Bek, my little sister, would get hassled by the teachers all the time asking where I was. In the end I think they gave up but then that thing happens. You know, when the oldest child in the family wrecks it for the younger siblings. Bek use to get “oh your Stephanie Roberts’s sister”. She did survive though unscathed and hopefully not scarred for life.

 

 

So with all that Jaimee is coping with on a daily bases, her Pdd-Nos, Ocd and anxiety she manages to excel in all that she does. She is very academic and loves her maths and science, has the respect of her peers and her school. She is confident, kind hearted, polite, very caring, helpful, loves her family, friends and the support network that surrounds her. Did I mention a crazy crazy sense of humour and quick witted. Ok, I think you get the picture.  

She just blows us away!

That’s a funny thing to say when you have two very literally thinker’s in the house, haha!

 

 

We are so proud of our sweet, caring and clever girl. Ad and I know she is destined for great things in life so look out world she is growing up way to fast and she will leave her mark.

Till next time

Steph

x

 

 

3 Teeth Out, 9 Fillings later…

So it was a couple of weeks ago now that the big day arrived, one I had been dreading for a long time, but it had to be done. Madison had to have some major dental work done at Caloundra hospital under a general anaesthetic and sitting in a dental chair in an office was not an option for us.

 

Since she was a little itty bitty thing brushing teeth has always been the biggest drama, well one of the many dramas. For Madison it is a sensory thing, bit of overload happening with the feel of the brush the feeling of the toothpaste not to mention the taste and smell all very intense. Which to you and I, usually brushing our teeth we don’t even think twice about.

 

                                       Madison at 5 Years of Age

Its just one of the many daily things that can get kids on the spectrum unstuck fairly easily, well our kid I should say. Everyone is different!! I seem to be finding that a lot of parents with children on the Autism Spectrum run in to trouble when it comes to teeth. Everyone has at least one horror story to share about the dentist. It’s comforting to know we are not the only family though.

We had been to dentists in the past and always I had gotten the wrap over the knuckles and a not so nice ear bashing as I wasn’t doing it right. I was destroying my child’s teeth and so on. Those kinds of remarks are a bit hard to let go when they make you feel like a terrible parent. Some people certainly have no clue or empathy as to what it is like living with Autism or even how hard it is just to get to the bloody dentist surgery in the first place. Best thing I ever did was go through the school dental system!!

So the time finally arrived after many appointments and the pre-op. A fair bit of planning usually goes into these kinds of events, picture cards, role playing etc. We were so fortunate and grateful that Madisons teacher last year, Miss Vanessa, had helped us prep Madison for all the dental visits leading up to the big hospital day.

Madison was amazing. She had to fast from midnight and be there by 7.00am, about a 35 min drive from our place. So it was a very early start for the girl. Then we waited in the waiting room for an hour till we got to go through to the next waiting room and get ready. Waiting is not one of Madison’s strong points! I forgot to mention I had a big bag of diversion equipment, little dvd player, plenty of movies, Ds game & games, little figurines toys that she likes, drawing books and pens, story books and the list goes on…

Then it was on.

We played dress ups, put on cool hats and doctor outfits and the nurse put some soft squishy gel on the tops of her hands which she really loved to squish, pre-anaesthetic. We had talked again about the mask going over her face and lying down on the special bed.

 

                                                              

The nurse had mentioned how the gas smells like bubble gum, first big mistake. Madison hates bubble gum and people blowing bubbles, it’s way too unpredictable. Some how we managed to divert a disaster when the nurse changed her mind and now it was strawberries and of course Madison said “can I have some strawberries, I love strawberries”.

We had two nurses to come and assist me with getting Madison to the theatre. They were great, letting her do the hand wavy thing in front of all the doors to open them. All the while Madison carried her dvd player and was wearing her head phones.

Right, so about now my heart is starting to race a lot faster, I’m feeling anxious and I’m thinking to myself this is going to be so crap all with my happy face on. Madison was about to open the doors to the theatre room when she could see through the windows of the doors on her tipee toes, a lot of people all playing dress ups. I’m not sure but there would have been 8 or 9 (it’s a teaching hospital) plus us, hearts flipping out now but the voice in my head is saying stay calm and stay on task.

 

The kid is too funny, we finally get in the room after some prompting and she says “I’m here doctors” still holding the little t.v like she is the star of the show, and she was!! She still had her long socks on and sneakers and the staff are all giving her space and time to take it all in.

She checked out the bed and it was nice and toasty and warm but they had the wrong type of pillow, it was a weird gel looking thing they covered up so Madison made them get her a real pillow. Once the real pillow arrived she was happy with that and one of the nurses was holding her little tv up so she could see it as we are trying to get her onto the bed. Wait! The shoes and socks, had to get those off.

Now here is where it went a little bit pear shaped.

As Madison is just about to put her head down everyone moved in very close and fast, too fast. The mask happened at the same time. It didn’t matter anymore about the strawberries, stuff the strawberries, the anaesthetist had grabbed her head and was trying to hold the mask down on her face rather firmly, but she wasn’t having a bar of it.

My little girl put on the biggest fight ever, legs kicking, arms punching everywhere and anyone in the way. With all of them and me trying to hold her down we struggled to keep her still. I’m saying “mummies here its ok” over and over, not to sure what my voice sounded like. There was a nurse behind me saying, it’s ok, she won’t remember any of this and the more she screams the quicker the anaesthetic will work. It wasn’t quick and it seemed like for ever, one nurse coped a kick to the stomach and I heard someone say do you need to leave. I’m thinking, Oh Shit Shit Shit!

It was the hardest thing to watch, Madison was looking in to my eyes terrified, screaming mummy mummy and I was letting this happen to her. I had that awful feeling of dread wash over me. Then she was knocked out and so very quiet. It must have only been a minute and a half to two minute but that felt like a life time.

The nurse who got kicked came over and said in a gentle voice you can give her a kiss, so I did and I told Madison how brave she was. I must have looked a little fragile at that point everyone was giving me nice smiles and nods. The nurse walked me out and I apologised for the kick, she was ok about it and said not to worry.

Ad was in the waiting room and as I walked to him carrying the little tv, long sock and sneakers, he could tell it hadn’t gone all marshmallows and lollypops. Then the waiting begins. Way to much time to think. Again it felt like forever.

Waiting, waiting, waiting, arrgghh!!

Finally the dental surgeon came out and said she was starting to wake. So Ad and I were in there like a flash. I caught a bit of what she was telling me, 3 teeth out, 2 were all ready wobbly and they had put injections into her gums to numb the site, blah blah blah. Just wanted to see her!

My baby was off her face and freaking out, still fighting off the bad guys when we got to her. The nurse was great and grabbed a big arm chair for us. Adam lifted her up and put her in my lap so I could snuggle her up. Poor little darling had blood all over her face and kept making sure we where there in between dozing.

When she woke it must have felt like the bottom part of her jaw wasn’t attached because she kept checking it to make sure it was there. Telling us free teeth out, she couldn’t say three because of her mouth and her face was all droopy. We had to try and explain that the feeling will go away. Don’t think she believed us, I’m sure it would have been sensory hell!!

An hour later we were walking out the door and going home. I was nervous going so soon but by the next day she was almost herself again. She is one tough cookie though; the kid won’t take any pain relief.

My greatest fear was that she would remember everything and be one of those patients who can be knocked out but can still hear and feel things. My grandfather was like that.

She did remember! Bother it! She talks about the talking while she was dreaming at the hospital and makes drilling sounds while point at her mouth. What do I do? This freaks me out so much. All I can do is smother her in reassurance that it’s all finished now and mummy and daddy love her so much and we are really really proud of our beautiful brave girl.
 

You know the tooth fairy came, 3 teeth that’s a lot a loot! We had an abundance of prizes to make the recovery just that tiny bit easier for Miss Madison as well as having the week off school. Madison loves it when there is no school. So there was a happy ending and we got through it.

                                          Look at my teeth out!

The best thing though is that she is much happier and feeling a lot better in herself.

Till next time

Steph

x

P.s  She is getting really really good at brushing now!!

 

 

 

 

 

 

 

Home made Damper, Yum!!

 

Jaimee and I made homemade Damper last weekend. We had run out of bread, oops, so we decided to have a go at making our own.

Didn’t quite turn out like a loaf of bread, it also did not last long on the cutting board. The smell was incredible and filled the whole house while it was baking. Even Adam came to investigate the kitchen to see what we were making!!

 

It felt so good to turn the TV off put on some music and hang out with my girl. It’s funny the conversations you have when your doing a task such as cooking together. Loved it, all the gossip from school came out, boy stuff, girl stuff and some very in-depth issues too. 

 

Best of all Jaimee tried what she had baked, a very hard thing for her to do as her OCD usually prevents her from trying any new foods. So proud of her and she wants to do it all again next weekend.

P.s It was a great way to get her off Face Book for a little while too, lol!

 

Steph

x