November December update! (LONG post)

Sorry it has been so long since our last update.

Mumvember ended mid way through. Yep I got to busy and too stressed as well as hitting some challenges that were simply not applicable to us.
November was a month of last days at School, dealing with changed routines (day care mum had holidays) and even more full on behaviours. He is really starting to show more signs of Autism to others now, not just the lots of little things we saw. From barking at people in public to inability to focus and stimming in public (something he used to just save for home).
We also had a result on our MASS application for the buggy. It was denied simply because he can walk. No other needs were taken into consideration. But like all good plans we had a back up. They came through in the nick of time. We picked it up on the 11th December (but more on that soon).

The end of November saw the Christmas season come into full view. Starting with our first Christmas party at Aussie world (on the sunshine coast) with the crew from Camp Autism. It was a blast and honestly can not wait to go back there again. It is like stepping into a time warp. good old fashion fun for all ages with out the huge expense.

The next Christmas party/end of year party was the following weekend. The Ipswich Parents/Carers ASD support group had it's Christmas party on the Friday with our normal meeting. Thank-fully this was a morning where it was just mummy! Sunday we then followed it up with a family sausage sizzle at a local (fenced park) so everyone could meet, fathers, older children ect. But in typical style Even though I had nearly all the items for that day, Thomas fell ill with a nasty infection in a wound on his knee. Thankfully a local drop in Dr's clinic and great support from others meant that the show went on and no one was the wiser (other than one hyperactive child sitting quietly in a pram that he was too big for).
Did I mention we had been busy!!
The following weekend was yet another Christmas party. This time it was something to behold. A wonderland of amazement for special needs children and their carers. Also the day we got the new buggy. I am talking about the famous Variety Children's Christmas party. The day was amazing but very full on. The children were suitably spoilt and entertained with non stop concerts and performances on stage, plus rides, jumping castles, fire trucks, Ambulances, assorted police vehicles and horses, SES, Brisbane City council bus, The Railway work shop display, Food, drinks, The Coffee Club stands, Santa and his present cave, balloons, ice cream from home ice creams, face painting, Mater - Variety bash tow truck done to be a replica Mater from the Cars movies. Plus Special Needs Solutions.

Special Needs Solutions needs their own special mention. These are the suppliers (not the funding body) of the new buggy. The SOS call was made to them the Monday before that we needed the buggy due to Thomas currant injury. They then did their best to have it by the end of the week (est delivery was not until 20th December). On the Friday they called me to say it had arrived in their office the courier was coming to pick it up, but they were not sure if it would be delivered until Monday. When I expressed my disappointment that it would be handy to have for Sunday for the Christmas party she put two and two together and worked out we would both be at the same Christmas party. We made the deal to pick it up that morning. Maureen did not disappoint me.

So we don't have all of the components yet. But we have the buggy and seat lining, which for now is getting us out and about! Thomas loves his new "fire engine". He has his own space and we no longer have to put him in a highchair when we go out. The buggy sits him at the table at the right height.

Thomas with his mate Naython at his favourite cafe - The coffee Club.

But the parties don't end there. The next one was I can't believe it is not Christmas, family Christmas dinner. This is the dinner party held every other year when John's sister (Thomas's god mother) comes up the week before Christmas with her (now fiance) to have an early Christmas.
Thomas got suitably spoilt and had a great dinner with other extended family as well.

During this huge week, Thomas also finished up with his day care mum. Sad endings mean new beginnings though. In the final weeks Thomas was getting highly stressed about going. He was more anxious and was stimming so much more, and as the mother I was being dismissed in my observations more and more by the carer. But the final straw came when she refused once again to provide the emergency pick up service she was hired to do.

So then came Christmas weekend. 3 parties, 2 days. ASD parents nightmares. But in general we survived. With the worst meltdowns started on the 27th over a missing train. But like all parents who hate shopping centres at the best of times and definitely during sale time. I found and ordered it on line. Should be here Tuesday LOL.
So we survived the Christmas party season. Can't wait for the new year to start. With a new day care centre, a new school and more independent days there is bound to be teething issues. But also new opportunities and hope that we are heading in the right directions with therapy and treatments.

Thomas's new year resolutions:
1. To be toilet trained (at least day time).

2. To start learning emotional regulation to lesson violent out bursts.

There is probably more. But these are the two big goals and probably the most important.

MUMvember day 8 & 9 and going to the dentist.

So yesterday there was not much to tell in regards to mumvember challenge. Was it a flop, well no, just not appropriate for the child. I was to leave a love note in my child's lunch box.

Well A) he can't read being only 3. and B) no lunch box yesterday.

We did have our own attempt. Whilst at an appointment I tried to see how much sign language that we had tried previously had sunk in. Sadly I think none. As I was signing "I Love You" to him, but he just was not understanding me. Can't say I did not give it a go. Just know now that more effort has to go into sign language in the coming months before he goes to school two days a week next year. (They use sign language a lot in the special ed unit so that they can communicate with the non verbal children.)

Today was to make an appointment for me. Well I kind of cheated and did make an appointment yesterday afternoon for me next week when Thomas goes back to day care. I am off to the long over due dentist appointment yearly check up LOL. Yes it is for me.

Oh yesterday John had a dentist appointment. So that in the future Thomas is not scared of the dentist our dentist wants Thomas to come to our appointments. To watch us be brave in the chair and then at the end Dr Mc checks Thomas and lets him have a ride in the chair. Even gives out stickers.

What a great idea. So there is no fear built up about going, it is seen as fun and gentle. Dr Mc is gentle as anyway. I spoke to Thomas about each step so that he knew what has happening. He was not keen on the noise of the drill or the suction hose, but I am not surprised. But lots of reassurance he did not meltdown nor did we have to leave the room.

MUMvember day 7 and Peads visit.

Well for mumvember today it was all about the look good feel good approach. To ditch the mum uniform and put something nice on and a lick of lipstick.

So today I started out wearing a dress, nice hot pink frock. Nope not suitable for the days events. it was too low cut. Whilst this mum likes the new improvement in my wardrobe, I am not lowering my dress standards and showing too much cleavage. LOL.

So in the end I choose some nice beige pedal pushers (they are not snug as they should be :)) ) and a cream and brown cotton top that has fine lace timing around the neck line and other embroidered detail around the scalloped edged bottom. Classic, cool and comfy. But still nice enough to visit the Dr's and do a spot of lunch and shopping with Thomas.

So today we had our five month review with the Pediatrician. He was suitably impressed that we were in the process of organising the Maclaren buggy. He was also very happy with how we were progressing with therapy plans, sleep clinic and early intervention especially with the school choice.
I have been told that they are one of the few ASD suitable ECDP's in our area. Whilst I am not overly happy with the program so far, I relieved that I am in the right direction. So we go back next June. He did mention he was not impressed with what happened at the sleep clinic and adding more stress to our life.

Today we also started our Christmas prep and wrote our letter to Santa. What fun. This also made shopping today easier as we needed stickers to put on the letter :) So this meant we went into stores that he would refuse to go to simply because we had a certain item in mind for the task he wanted to do. Something to keep in mind for future reference.

MUMvember day 6 and other events.

Ok so first things first MUMvember day 6.

Write to the mum who I most admire

Today I ummed and arrrhhed over this. Truly torn between two beautiful mums who I have been blessed to know over the last 3 months. Who have taught me a lot, shown me that I do have the strength and courage. I am not going to publicly name these two lovely ladies, it is just not my thing to do. So sorry no write and tell about today, but I promise I did do my challenge.

The other news of the day. Because we were away this weekend, we skipped church. And the family we now go to church with, their youngest boy missed Thomas. So upon hearing this I asked if the boys would like to have a play date. N answered YES straight away.

So after nap time (and a quick lesson on the drums) we headed down to their beautiful home. the boys played with each other. Whilst there is a 4 year age gap they did ok. Both boys had their issues with playing, but with some intervention, and kind words the squabbles were kept to a minimum until it was time to go. Sigh.

Both boys were over playing with another person. It showed. This is something I have to learn is his ques to being over a social situation. Something that will come with time for both of us. But each day we learn and grow. Something that I love being a part of for my son.

MUMvember day 5

Kiss your sleeping baby.

Was that even a challenge, well yes when you have at child on the spectrum, sleep is precious and usually too easily disturbed.

But today I was the one who managed to get Thomas off to sleep. 3 others tried. And yet no one worked out what was going on. So I shut the windows, closed the heavy curtains, turned on some music. He was asleep with in 30 seconds. So I kissed my baby, relished the calmness that is rarely seen.

Sorry about the poor image quality it was from the front camera on the iPhone.

Mumvember day 4

Ok so today was to have fun in the kitchen and bake something.

Well this timed in well. Today we had the Ipswich ASD Parents/Carers support group meeting. Also Thomas was home with me. So we made chocolate slice to take along. You know the classic chocolate slice you learnt to make in grade 8 home ecconomics class.

Easy peasy. Thomas even got in on the act and helped me mix the wet ingredients in. He loves helping me bake things. So we did this over breakfast.

Here is the results:

MUMvember Day 3

Today's activity was to take some time out for you. To take a small amount of time to relax.

Well given the lack of sleep last night it was going to be a challenging thing. I was tired, slightly emotional and irrational. But Thursday is a school day! Every other Thursday is what is known as mytime.
My time is a program in which we take the children into one classroom building, and drop them off like you would day care. They have qualified carers/teacher aids in there looking after the children. The parents then go over to the neighbouring classroom building for an information session or chat with other parents. It is good. It provides time out a chance to have coffee/water and adult conversation. It goes for about 2hours.

Today I did get some answers about school next year (yippie!!) and chatted to another mum who I used to work with many moons ago when I was an aged care assistant nurse. We also had a physio talk to us about choosing shoes for children with low tone. I guess they are seeing a high volume of these children coming through with inappropriate foot wear for their disability and the activities for the day. This was a good chat as we are in desperate need of visiting the specialist shoe store for new shoes. This store is in a VERY BUSY shopping centre with atrocious amount of fluro lighting. Till we get a pram it has to wait.

So on the way home he fell asleep in the car. All good I thought. Got in the door, sat ate some lunch (or tried to with out much luck) and then laid down on the bed for a nap. Not ten minuets later. Somebody was awake. Sigh. You can't say I did not try. I was semi successful. It was not perfect.

Later on whilst play school was on I did however fall asleep on the couch. Despite the roaster I did not know I had tried waking me up. But that is the joy of raising Thomas. Never a dull day or moment.

Tomorrow is to bake something. Well we are going to try and do this before the support group meeting. Wish me luck, we have to be out the door by 8:45.

Sleep clinic

I briefly mentioned the sleep clinic in last nights blog. But honestly wanted to take on the first night of the new regime before commenting. But really I wanted to be proven wrong. I wanted the Dr's advice but right. But really I could see the flaws and both John and I walked out of the appointment gob smacked and in shock over the request.

So why are we there in the first place?
About 18 months ago Thomas was still in his cot. He still used the Angel care baby monitor with breathing sensor mats. I purchased this monitor 3 years ago when he was about a month old as I was home alone one weekend, I noticed on the Sunday morning he was sleeping longer than normal for him (yes he has been a rotten sleeper from birth). So I went to check on my new born miracle to find his complexion rather grey. He was still breathing. But it was shallow. From the next day on wards he had the breathing sensor pads on his cot. We never had an issue with them going off without due cause. (The spin cycle and the use of the sewing machine in it's old place at the same time for some reason set it off).
Suddenly before his second birthday the monitor's alarm was going off. On investigation it was going off because indeed he had stopped breathing. A stimulating rub on his chest and calling his name seemed to snap him back. This could happen up to 3 times a night. It was scary. No Dr's at the time could work out what was happening. His pead at the time was a down right jerk about the situation, going so far as to tell me that it was impossible that it was happening. We never went back to him. He also refused to help get us seen at the sleep clinic.

So I did what all scared mums do. I fought hard and long for an appointment. In the mean time, Thomas turned 2 and had grown out of his cot and started climbing it. That it had actually become unsafe to even try to keep him there. So we had to put him into his bed. Which meant no more monitoring. Which meant once again fighting harder for an appointment. I was ringing weekly. I felt that I was getting no where fast without the support I needed.

In the mean time it was getting harder to get him to sleep, night terrors started which meant he was awake for up to 3 hours at a time. We were going through hell. Sleep deprivation was effecting everything in our life.

Finally in November last year an appointment came available. The Dr's thought it was his tonsils, But it had previously been dismissed by the Ear nose throat Dr who referred us to them. We then had to wait a couple of weeks for the sleep study. Which we were on the cancellation list for. It meant a sleep over at the hospital attached to wires and meant to be an O2 monitor in the form of nasal prongs. But that could not be done.

That night he woke at 3am and refused to go back to sleep. That is all they found. We were sent away to come back for a review in 6 months. That appointment came a week after his diagnosis. The Dr we saw was a rude cow who forgot who she was there to see. She ignored Thomas so Thomas went burko. We were made to feel like bad parents and once again we were told to change EVERYTHING we were doing, that previously been told to do by child health nurses.

Then 3 months later we had a review. Finally a decent Dr. A Dr who listened, could see we were not coping. Took us seriously about his diagnosis. Before I could even ask about Melatonin he was writing the script. It seemed to be the god send we needed. But it was only getting him off to sleep. It was not helping him sleep through properly yet. HE was still waking at 3:30-5am every day.

So we headed back for our 8 week review. We were put in a special clinic to see a certain specialist. We had heard great things about this Dr. People had raved about her. I guess we were expecting big things yesterday. Once again we were let down. We were given another junior registrar. Who we had not seen before. Thomas was once again high as a kite. He could not care how high he was getting. Than he decided that he would go consult with the Dr we were there to see, leaving us in the room alone for 20 minuets.

The result was to give our toddler SR melatonin. in tablet form. Yes this Dr wanted to give Thomas at 3 tablets to swallow. Straight up I said no, then he suggested crushing it in honey and I quizzed him to weather it was possible because as far as I knew from personal experience you can't crush these tablets. So after he called the pharmacy, I was proven right.

Plan b. Lets give Thomas an extra dose of melatonin at 12:30am. WTF. we go to bed at 10:30 by the time we chill and do the things we need. This Dr wants me to wake 2hours later to give my son more medication. Clearly this man does not have children. The issue is also I take night time medication to control resting pain. Once I am asleep, that is generally it. So the decision was that if this medication was going to help him sleep longer, than I was going to stay up, work and give him his meds at midnight.

So this plan seems easy right. Take one already sleep deprived mum, give her more tasks in the middle of the night with the hope that it will make the child sleep in. Oh yeah you have to get this medication in the child's mouth at midnight, with out waking them. Then try and get off to sleep your self.

Well reality, I made it to 12:15 and went nope can't stay awake any longer, gave the medication, fought with him to open his mouth, got into bed. Husband snoring. GREAT. An hour later I get to sleep.

At 5am Thomas wakes screaming for me. Kicking walls. Yelling, signing etc. It is now 8:30 we have school in an hour. Some how I am meant to function for this. Not sure yet how. But I guess we will battle on. What choice do I have.

MUMvember day 2

Ok so today is all about not yelling a screaming at your children. I woke up with wonderful intentions. Started out fantastic, no really he slept until after 6:00am. This in it's self is absolutely AMAZING!

But today also meant sleep clinic. No day care, no normal routine. We all know that these children thrive on routine. Today it was broken.

So how did the not yelling a screaming go? Well not so great. But I am not surprised there. A minor incident by 7:30am saw me raise my voice. Then by 9am he was really pushing buttons, ignoring my repeated requests (this is completely normal here) and just being politely defiant. (Is new phrase is No thank you when asked to do something.) And out came the first true yell.

Opps, the halo slipped. The perfect mum image went flying out the window. I guess a girl can dream in hope that one day I will be the perfect Christian mum who never yells and raises their voice. But honestly some days here I have to. So the picture of the day is this:

Mumvember.

So I was having a quiet afternoon trying to avoid meltdowns over not wanting the lunch I prepared earlier (he fell asleep before lunch) when I stumbled across an amazing idea on twitter called MUMvember. If the men can have Movember, why not have something fun for us mums too.

So I did a little bit more of a dig around on facebook, and what came up was the Kidspot story about it. I read the list and thought why not!

So here is the list:

Tonight was have a picnic dinner. So we did. I was going to do something with mince, but it just did not go with a picnic theme (burgers are out here) so I went and looked in the fridge and pantry. What spells picnic more than a Zucchini slice. So when John called to say he was picking up a couple of things on the way home I got him to grab a salad mix too.

Thomas and I went about setting up for the picnic. We swept the deck, laid out the rug and table cloth. placed down the outdoor pillows.

Then Thomas decided that we had to use the Tupperware bowls and Ikea cutlery. Awesome.

So we cooked the slice up And yes Thomas helped me in the prep! and waited for John to get home.

And in the end it worked well!

Sorry for the poor pic, taken with the cracked iPhone's front camera.

Millie guarding the Picnic.

Tomorrows challenge it no yelling or screaming. Wish me luck, lots of coffee and loads of patients.

Simple things... (Religion mentioned)

When you have a child on the spectrum it is often the simple tasks that can be the most challenging and daunting.

Today's example is going to church or place of worship. Sound easy enough doesn't it. Going to a place of god and praying and asking forgiveness. Being surrounded by people with the same beliefs as yourself.

But having the same beliefs in god does not mean they have the same tolerance level or that they fully grasp that all children just can't be seen and not heard. We used to go to a parish that was an older parish. Whilst it did have families the children had an unwritten expectation that they would sit still and quiet (or play quietly) for the hour you were in mass. And even though we had been taking Thomas since he was a baby, This was becoming more and difficult for him.

Most parishioners took joy in his smiles and antics. Other however were not so joyful about the little boy who was never quiet or could not sit for more than a few minuets. Some even took it as a sign of bad parenting. Even though we were doing all the right things to try to keep him contained and happy. (food, toys, books, colouring activities, comforters, monkey backpack/harness.) It was becoming IMPOSSIBLE nightmare.

Then after joining a support group I met another catholic mum with 3 on the spectrum and her youngest is very much like Thomas! And yes they still managed to go to church each week. How I dared to ask? And that started a new chapter in our christen journey. We found another parish that welcomed children and all their antics. Where even the toddlers were ok to wonder (with in parents reason of course) and were these children are ok to colour and draw, play trucks and cars, even paper aeroplanes! Were children can be children and accepted for them as gods people.

Only one person dared to shhh the boys. A young childless couple who had dared to sit next to the boys playing with trucks. (yep the boys were there first playing.) But that is bound to happen. Next time they won't sit next to two robust boys if they really wanted to listen. And so what if Thomas wanted to sign a wiggles song rather than say the prayer or hymn at the time.

Tolerance and love is often taught to us by the seemingly unwise. We often question why we have been given these blessings. But every now and then we see why god has created them. We need difference to learn tolerance of others, patience and kindness. With this comes a greater love for each other.

So today I am grateful for the people who have come into our life. For showing us there is tolerance and understanding in the world.

Bouncing High

Well I have been thinking about it for a while. Stimming activities for inside. After all the rain we have had inside stimming activities are essential. So I hunted Internet sites etc for a mini trampoline. Firstly the one with the bar. He wasn't too keen on using the mini tramp out the back with the bar so I re thought about it.

Then it clicked to me that there is the round exercise style ones. So hunting I went. Big W online. Great one under $40. But then they wanted to charge me $7.00 delivery, when the store 1.5kms away had them in stock.

So off I went to get one. Said not a word to the boys about it. Just went in and got it when I had to go and get other groceries. Came home and neither of them paid much attention to this 3ft square box I was dragging in. It was not until I went in started opening the box that they worked out I had something big!

It was easy to assemble (Bonus!!) and was put together in 10 minuets. And straight away the bouncing began. Hopefully now it will provide an indoor source of wearing him out and a way of calming him down. And please lets hope it does not hype him up even more!

Wordless Wednesday

Best Friends

Mr Adorable.

Clothing

We are going through a phase at the moment where Thomas HATES wearing clothes. Well anything other than PJ's that is. And some days only just the shorts.

This has made for an interesting week. Yep we have got to the point of not caring what he is wearing as long as he has clothes on when we go out. So if that means he goes out in satin boxers and a t-shirt, well so be it.

I am not sure what started this but it has slowly been creeping up on us in the last couple of months. He started off just protesting about getting dressed (often loudly and occasionally violently), but now it is flat out refusal to wear anything other than pj's most day.

He has not complained about what the issue with clothes actually is. Well other than the other night, where everything either blew raspberries at him or was too noisy. (very funny conversation with Thomas.) So is this just another Thomas quirk or an ASD quirk? I am not sure, but I know this is a hard one for me to deal with, to let down my standard of appropriate dress. But there are some battles not worth fighting as there are others that are more important right now.

Meltdown vs Tantrum

Ok to the untrained eye these could be seen as the same thing. And many people still see a meltdown the same as a tantrum. But there are some key differences.

A tantrum occurs when there is a direct trigger of not getting there own way. Weather it be a lolly pop at the store or a not being able to stay up for a little longer. They scream let it out and then move on, occasionally they refuse to budge and throw themselves on the ground ect.

A melt down occurs when there is a prolonged trigger or multiple triggers causing an overload to the senses. Some times a meltdown can be held in until the person is in a safe and comfortable environment. There often appears to be no reason why the action is occurring.

A melt down can take place over HOURS not just minuets. They can be from just simple crying and screaming to full scale violence and destructive behaviour. Often after one of this prolonged episodes the person is tired and exhausted and depending on how long it lasted can be this way for a day or two. Because even before the meltdown the sensory stimuli is exhausting enough. So once they have been letting off steam for a couple of hours, they are really truly exhausted.

The reason I write about this is because I have had so many comments from mothers of NT children say to me it is just a tantrum all kids do that. Usually at the time I am stunned and can't get a correct response. Or just over trying to explain the differences.

So next time you see that screaming child in a sensory overwhelming environment such as a brightly lit supermarket. Stop and think is it really happening becuase mum said no you can't have a lolly pop.

Anxiety... and first item on the wish list.

Ok so this is a post I had to take time to think about before posting. Be warned it is not pretty.
So potty training came to a screeching halt at the end of last week. Why? Not becuase he was not physically ready for it. But becuase his anxiety over using the potty and toilet were coming out in physical symptoms. He was back to having night terrors and IBS. Suddenly we went back to the nappies and all was back to normal almost instantly. So we will wait a while and try again.

Now most of you know already I have a craft business. So to help Thomas out with Therapy items I have created the Puzzling range. A range of items using puzzle piece fabric from bags to key chains to T-shirts for adults and children.

Well after our weekend out it became apparent about what was needed sooner rather than later. It is a specialty item called a Maclaren Major Elite. A special stroller designer for older and taller children with special needs who can't walk all day (or in our case melts down in public and either trows himself on the ground or does a runner.). They don't come cheaply and even the hood is an optional extra!! Yes just about every thing that would come with a regular stroller is an optional extra, like the basket, the hood the foot warmer and rain cover ect. WOW just wow.

So with a hood, basket, lateral supports, rain cover and the stroller the grand total is = $970!! There is a wow for you.

The stroller we brought for our Sydney trip earlier this year is now too small for him. As he is nearly 100 cms tall his feet drag on the ground or he rests them on the wheels. It can be fun times going out.

So this is what we are working towards. Yes it is a big ticket item. But a needed one. So this is what Fluffy Changes and Raising Thomas's Puzzling new range is working towards for now.

Toilet training

The joy that most parents face in the first 5 years of their little ones life. It can be the source of the greatest frustrations for some. For both child and parent. Especially with a special needs child.

We are now going through this for the 3rd time (yes that is right we have tried twice before!). It started off ok. But now we are getting to the defient stage again. Which is where it gets frustrating. There is a new trick that started yesterday. If I keep wetting/soiling mummy will stick me in the bath and I get water play! This will be short lived if mummy has her way.

But it seems that it is 1 step forward and 3 back at the moment. After a week though I am sure he will master it eventually. We have gone on outings now with no issue. They just seem to be at home. Sigh. I am sure over time it will get better. But for now the washing machine and dryer are getting a full work out!

All Partied out

Thankfully all the birthday festivities are over with. But what a great idea it was to outsource the birthday party. The children had a ball. Even if pass the parcel was a hilarious event, which it seems to be at 3 year olds parties.

The birthday boy was so happy that all of his best girls were there. Yes he had boys at his party, but honestly the girls that came really made his day.

Will we out source again? Yes maybe every other year. Would I choose the same venue. Let me get back to you on that one!

But the main thing is they all had fun!

The Birthday Boy.

Yesterday was Thomas's 3rd Birthday. It was a very exciting day action packed and full of surprises and treats around every corner. He got very spoilt by everyone.

The day started at Nan and Pops as we had stayed over night. It took some convincing that it was actually finally his Birthday. It was not until Daddy told him that he finally believed it. There were presents and cake, before getting in the car and heading home.

Once home and nap time was done, the toys were played with and part 2 of the day started by going on an afternoon tea play date at my sisters house. The boys had a fantastic afternoon chasing each other and playing. And yep there was MORE cake.

Part 3. Dinner. This was just with the 3 of us. It was divine. Once again our favourite restaurant did not disappoint, they were warm welcoming and made the night special for Thomas and us. Including yet another birthday cake. So he truly got the most out of his day.

More amusing conversations

J: Thomas can you hop down from the chair.
T: I don't Like too (insert whiny voice.).
J: Little Princess hop down off the chair now!
T: I am not a Little Princess.
(For those who are not familiar with Little Princess, it is a show on ABC 4 Kids on channel 22. She is a whiny little princess who is spoilt rotten and I swear she is totally on the spectrum!)

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J: What day is it tomorrow Thomas?
T: School day.
J: Well done Thomas.
T: Mummy it is a your time day too.
M: yes Thomas who are right.

(On certain Thursday's there is a program for parents at the Early intervention unit called My Time. The parents go off to another room/building and have an education session whilst extra carers take care of the children. It also means we can have a hot coffee and a break too.)

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Every day Thomas astounds me with the information he knows and the conversations we have. He is so adamant as well about the things he knows. This week we had a new respite carer, who obviously had not been exposed to a child with Aspergers before. I could see she was constantly comparing her son and Thomas. But was amazed at how well he could hold a conversation with me and how much he could tell her about the animals we were looking at. Gosh I love having a little professor some days.

Sound

It can be such a wonderful thing. We like it in our lives becuase mostly it is pleasant. We can communicate more effectively, show emotion, relax to music, and even dance to our heart content.

But in the world of Aspergers sound can be a double edged sword. Sound can make an Aspie, cringe and go into full scale meltdown one minuet and then calm and relax them the next. Just depending on the type of sound.

For Thomas, the sound of church is too much. He can be happy and content before the service starts. But as soon and the organ starts and the parish starts to sign, it makes him hyper and anxious. He can't sit still or be held securely. He wiggles fidgets and even gets aggressive.

But put baby Mozart on his CD player and he is calm and content.

The other interesting thing, is these Aspies often hate loud startling noises, but they are the worst offenders for making loud and obnoxious noises. Take this morning for example. It started with noise. Banging on bedroom walls and banging the bedroom door closed over and over again.

Then singing none stop in a medley fashion of all the songs he knows, VERY loudly. Currently even though I am sitting at the same table as him having breakfast. I am getting HELLO HELLO non stop and all other types of loud ramblings. It is very loud in this house this morning. But if I got up and put the radio or iPod on Full scale war would eventuate, because it is my noise, not his.

OMG what happened???

This is what I have been facing every where I go lately. Because currently I am the bionic mum. I have a special brace from my arm pit to wrist.


This is all becuase I am raising Thomas. Yes, being the mum to Thomas comes with loads of joy, but occasionally pain. A month or two ago when Thomas was allowed to be in our bed he jumped on my wrist hyper extending my elbow over the edge of the bed. OUCH is not the word. I have damaged the ligaments.

So yes. What happened. Thomas happened. Raising a child with an ASD is like training for the Marathon of your life. It is exhilarating, but it has it's painful moments. You push through them and never give up. Because you simply can't. You don't get to rest. So instead you modify and recover slowly.

OT and Aspie moments.

Today was his second session of OT today. It went really well. He flitted from one activity to the next, but his therapist was great at keeping him on track. He even got to play with scissors.
The funniest moment came when she asked Thomas to crack open the theraputty to find the animals inside. The first one was a tiny baby (rubber) crocodile. Well that scared him and he almost refused to look at it, let alone touch it. Funny as. Even now he will tell you he was scared of the crocodile.

The Aspie moment of the day way the best. Being a direct Aspie child can really work in ones favour. I asked the neighbour (builder) what he was going to do to repair the back yard. He told me he would get around to it soon. Hm-mm. Like this mummy believes that.

Next thing Thomas goes over to the fence to ask him when is he going to fix his grass back up. Because he wants to play. I love my son.

Getting organised.... and today's quirks.

Well I did it. I got my act together and brought Mr T a cube bookcase to put his toys and games into. Putting it together was not fun, especially with one arm in a brace. But it is exactly what I wanted and needed in here. I was sick of stepping on toys, falling over trucks and blocks ect.

So now everything is neatly put away in it's place. Blocks ect have their own buckets. puppets have their own cube as do other toys, some share and it works well. Now I have another to do for his toy room too. Sigh. But it is going to look awesome. Control over the mess in this house is going to be regained.

It did how ever cause abut an hour of running in circles and arm flapping, but I am not sure if that was becuase he was excited by it or if it was just the change or both. This will help him also concentrate on one activity as he can only take out some toys not all of them.

PS yes I know there is a potty in there. It has it's place in the lounge too. I am hoping by Christmas another attempt at toilet training will happen. I guess a mum can dream that by the time he goes to school he will be fully toilet trained.

Now today's adventure. I am proud of myself today for not being rude but at the same time standing up for my child. We were in a department store doing the fathers day thing (like the rest of Australia) and were waiting in the checkout line. As I was organising the items to go on the counter from to trolley the lady behind us was trying to make eye contact with Thomas.

He was getting naturally uncomfortable and trying to divert her eye contact by turning away the best he could in his seat. The next things she says is "Playing shy is he." I turned to her and said, "That is becuase he is shy." And moved the trolley down so I was then standing between them. I avoided saying that is becuase eye contact is overrated when you have Aspergers. I just continued to let her think my child, who was doing his best not to be sensory overloaded, was just a shy little boy.

I know children a cute and some people are naturally drawn to them. But why do these same people think that becuase they are naturally drawn to a smiling child, that the child is going to like them too. Grrr. But I am also happy to report no meltdowns in the shopping centre at all. This is a huge achievement. But he had all his safety blankets there at the ready if need be. Oh yeah and snacks.

Sleep Clinic

Thomas started going to the sleep clinic at the Marter Children's hospital last year. He has always been a mildly horrible sleeper, but last June/July started having a few moments of sleep apnea a week sometimes a few times a night. Enough that would worry me greatly and would set off his monitors.

The Ear Nose Throat Dr we saw said it was not an obstructive cause and he needed to see a sleep specialist in Brisbane. This started the long fight/battle to get him seen at this clinic. By the time we got there he was no longer in his cot and we were unable to monitor his breathing effectively enough. He also became an even worse sleeper, taking forever to get to sleep and then waking constantly through the night often being awake for up to 2 hours at a time.

Well this has been getting worse and worse in the last 10 months. We were getting less and less sleep, often sharing the wakings in one night. So sometimes we would be luck to get 3-4 hours sleep at a time. Our last visit to the clinic in May was actually the day after we found out Thomas had Aspergers. The Dr we saw was terrible. She dismissed everything and demanded that we change everything we were doing, causing much more distress than ever. (seriously who sets about to change a child with Aspergers routine so greatly all at once!) And the things she suggested had all been tried before. If it worked at any stage it might have worked for one or two nights then never again.

So yesterday was our 3 month review. The Dr we got was amazing. He listened to us. Observed Thomas going off his tree in his room becuase of the lighting, acknowledge that it was not the best place for him to be, so he did a quick physical exam and sent Thomas and John out of the room and back to the starlight room.

He then suggested Melatonin. I did not even have to ask about if it was suitable for him. I am so very glad for this. He realised pretty quick what a volatile little man he is. (I have a bad arm injury right now from Thomas jumping on my arm whilst in our bed.) So last night we tried it. To the most amazing results. John reported he had not even finished the story time and he was out to it! 11 hours he slept for and then laid in his bed quietly for about 20minuets before calling out to me.

Today he is happy. Cooperative and we have not had one issue, even with changing his nappy!

Lets hope that this continues to work.

What is Aspergers?

Taken from the Raising Children network:

As children, people with Asperger’s disorder are sometimes described as ‘little
professors’. This is because they can be extremely knowledgeable about their
favourite topics, and might also have advanced language skills for their age.
Unlike children with autism, they might start discussions.
People with
Asperger’s disorder often miss social cues and can misinterpret language. For
example, they can have difficulty understanding jokes, or they might take things
too literally.

Social interactionChildren with Asperger’s disorder might:

*initiate interactions with others but have difficulty in sustaining social interaction
*interact with people if they need something or to talk about something that interests them, but not for the sake of being social or out of genuine interest in others
*interact in an awkward and stilted way (for example, they might avoid eye contact while speaking or interpret things literally)
interact more easily with adults than with children
*not show emotion or empathy.

Communication and languageChildren with Asperger’s disorder might:

*be very verbal (for example, they might label everything in a room)
*join words together at the usual developmental stage (around two years)
*communicate with others about their own interests
*use a flat or monotone voice
*answer questions, but not initiate questions if the topic doesn’t interest them.

Repetitive or persistent behavioursChildren with Asperger’s disorder might:

*have restricted or obsessive interests that make them seem like ‘walking encyclopaedias’ about particular topics
*prefer routines and rules
*not respond well to change.

Instruction Manual

There was never an instruction manual written for raising children. I think if some one wrote one it would be bigger than the bible. And then no one would ever have children.

Nights like last night really bring back to what mothers do not talk about to other young women and definately not expectant mothers. In the last 24hrs I have had 4 hours of very broken sleep with Thomas. We spent 8 hours in the ER from the wee hours of the morning.

One of the best advice I was given from one of Thomas's therapists, is when these kids say they are in pain. They really are in pain. Last night I let my parent instincs work and followed what I beleived was right. Thomas woke at 12:30 asking for me telling me his throat was sick. Every time we touched him he was complaining it was hurting. He had a fever and would not take panadol.

So I bundled him up and into the car we went off to the hospital. I will say straight up. I am not a fan of this place. But at this time of the night when you have a sick child, this is your only option other than driving 45minuets into the city.

We had a long wait, but I warned them straight up that he reacts badly to flurescent lighting. I did my best to keep him in the pram under security blankets that drape over the pram. Afterall it hurt to touch him. When we finally got put in an exam room five hours later, the first thing I did was turn off the lights. Every staff member was told to keep the lights off.

They were to only use the exam light (which is LED). This worked. Thomas stayed calm. Only getting restless towards the last 2 hours with the demands to go home. But because his voice was nearly gone he was not loud, and he had no energy to get fiesty with me.

We got the surprise that he had croup and the medication to treat it and sent home.

So you see if there was this instruction manual, no one would ever sign up to be a parent. Especially not a parent of a special angel of the Earth.

Conversations with Thomas.

These are often intresting. Some times you just walk away shaking your head at just what happened.

Today we had a couple of funny chats.

M: Thomas are you running around in circles again?
T: No mum I am walking aroung is circles.
Silly Mummy.

M (to daddy): I think we need to get Thomas some new shoes soon.
T: For my birthday.
M: Are you going to buy yourself a pair of shoes for your birthday?
T: Yeah and a bone.
M & D look at each other confused.
M: Why do you want a bone?
T: For the dog of course.
D: What about Millie*?
T: Millie will like a dog.

Hmmmm what dog.... I think someone has had way too many scooby snacks.

* Millie is our part persian cat. She is tiny with a heap of attitude. Almost like having another toddler underfoot most days.

The Diagnosis.

With Thomas being so young I have been asked on way too many occasions by other ASD parents how did I get a diagnosis so young? Some are in disbelief, some have a tinge of jealousy, others assume that I pushed for it. In fact it was none of those.

For a good 12-18 months we knew Thomas was no ordinary boy. Even though I was continually told he was just a boy. Like boys are meant to be rough and tumble and belt up their parents. No one was taking me seriously. I could not discipline him, nothing worked long term. EVER. Shopping was a nightmare. Church going stopped as he was upsetting the parishioners. Not purposefully but just becuase he was Thomas, loud, vibrant, and could not sit for more than 30 minuets and would physically attack us.

Early in 2010 I approached the centre director of the day care centre to get his behaviours monitored closely. When I was able to get a response, I was told he was smart, not a bother and played often on his own. Which was the case every time I picked him up. He would often be in the dirt or sand pit playing happily.

But unlike other children walking to the car was difficult, there were tantrums, he would run off, refuse point blank to hold my hand. And don't even bother asking how his day was. Driving home I would often get screamed at in a defiant way, almost like he did not want to leave. Yet the staff did not see this. They rarely saw the horrible side or as what is now referred to as a meltdown. I put the daily meltdowns as being part of the witching hour that supposedly all babies and children go through. The stage of the day where they are just tired and over it.

I often found Thursdays the worst day of the week. Still have not worked that answer out yet. But that was the day he was at the naughtiest, the most defiant and difficult to do anything with. So at the end of 2010 when there were just too many staffing issues and safety issues at the centre for my liking I pulled him out.

I then interviewed and found one awesome day care mum, sure she was even further away from us. But she seemed to have her head screwed on. He would through the day be just one of four at the most. I also mentioned I had some concerns over his behaviour.

With in weeks she was telling me about what she was observing with his quirks. He has a tile in her room that he must be able to see and be able to sit on. Or he gets distressed or pushes what ever or whoever is on it off it. The way he had to play with certain toys. The list goes on. She was awesome at seeing that it was just not my imagination that there was something different about him.

In early may there was a workshop for the carers and parents were invited on sensory processing issues. My day care mum basically told me I HAD to go. I'm almost certain if I used the no one to look after him excuse she would have told me to bring him over to her.

I asked one question/statement at the beginning of the session as light bulbs were going off in my head. I was told I was calling them the next morning to get help. Yep ok so we do have issues.
When I called the wait was huge. Not wanting to sit on my hands I googled behavioural paediatricians. I found a local Dr and called him to get an appointment. The earliest was July. Ok. So I got a GP referral, not my ordinary GP either as he was on leave at the time, it was another who listened to me and did not dismiss me.

The next time I was in the same building as the paediatricians office, I handed his receptionist the referral letter. I wanted this Dr to know why we were there before we got there. (I highly recommend doing this!) Well the receptionist had a cancellation just before I walked in for the next week and gave it us.

At this stage we did not know why he behaved the way he did. I had not googled his behaviours, but was led to believe we were dealing with a sensory processing issue. But around this time he seemed to have a language regression that was of concern. He was suddenly talking like a seagull. It was driving every one up the wall. Here was this highly intelligent little boy, who has been speaking clearly and in sentences since he was 12 months, suddenly regressing in his speech.

The day of the appointment was kind of like any other day. We had told him of what we were doing and he seemed excited to meet a new Dr. We arrived and played with the toys. The Dr came out of his office and he wanted to go in straight away. For a few minuets the Dr stood by the receptionists desk seemingly talking to the receptionist, but instead he was observing him and his anxiety. By the time we got in the room Thomas was so anxious only his seagull voice came out.

The appointment was LONG Thomas played happily colouring in and occasionally interrupting us to ask crazy little questions. The Dr asked what seemed a billion different questions from birth to now. He listened to our concerns and was patronising. (such a refreshing change from his first pediatrician!)

At the end of the appointment he asked what we knew about Aspergers. Nothing, he asked if there was a family history. And at the time we had to say no. But now we know, there is a HUGE family history.

He then told us Your son has High functioning Aspergers. The moment that changed our life. And not for the bad either.

So this is the story of our diagnosis. We went in thinking he had a server sensory processing disorder. We walked out with a totally different diagnosis. Or is it??

Raising Thomas

Thomas is currantly just shy of his 3rd birthday. 3 months ago was Diagnosised as having High Functioning Aspergers. Suddenly this vibrant, happy, yet quirky little boy's life made so much sense. Than the more we found out. The more my husbands life made sense.

This blog is about the ups and downs and daily challanges. The funny Aspie moments, to the ones less spoken about.

Sleep here is over rated. I survive on coffee. I had an awesome sense of humour before Thomas came along, which amazingly helps big time. Afterall if you can't laugh you would just cry all the time.

My goal is to raise awareness of Aspergers. And have a place to talk about it.