About trying to raise a boy with Autism and ADHD whilst keeping a sense of humour.

Wednesday, November 9, 2011

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.

Monday, November 7, 2011

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.

Sunday, November 6, 2011

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.



Saturday, November 5, 2011

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.

Friday, November 4, 2011

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:

Thursday, November 3, 2011

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.

Wednesday, November 2, 2011

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:



Tuesday, November 1, 2011

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.