Tuesday, September 15, 2009
Actually, there's two recent TV tales to tell.
Firstly, with the recent renovations, we have had quite a few power tools and such around the house. We've been laying pavers with much much help from some friends, and one particular weekend was at the stage of cutting the pavers to fit in the little odd sections. The tool we were using was a wet-saw, which had a hose attached at one side and then power one the other side. We had attached a plastic bag over the power cable to protect it form water getting in, but... it wasn't completely water-tight.
After around an hour or so, the power to the entire living area of the house failed.
Jono knew what needed doing, so he grabbed my hand, lead me out to the power box outside and told me to fix the switch (yes, he has seen this before... but only the once or twice) I flicked the switch, and the TV started back up... he was fairly distressed at this stage, but once the power kicked back in he started to settle. Unfortunately... the TV didn't stay on (neither did anything else).
More tears, and grabbing my hand telling me to fix it... I went back to the swicth, tried again... and the same problem. Ok... so I start pulling devices out of the power to try and stabilise the circuit, unplugged the microwave, the kettle, the computer, the amplifier... none of which was helping at all. Then we realized.. the wet-saw! We went out and unplugged that, and a whole heap of water came out of the cable - luckily we had the safety switch built in.
So we turned it all back on and plugged it all back in, and showed Jono that it was now working, in response to which he held on to the top of the TV, gave it a hug and collapsed in a pile of tears - oh the drama and terror was over!
The second tale... again a problem with the TV. Daddy had taken the TV for a work conference, to use for displaying computer software on a large screen. He left the house before Jono was awake, so Jono didn't see it leave, however, when he got up he noticed. After he woke he came downstairs to get ready for school and saw it was missing. He said 'where's TV mum?' and I couldn't explain that it was gone for one day and coming back.. so I said it was missing. His solution? 'RT Edwards Mum!'... Yes honey, we can go get a new TV from RT Edwards.. but we have to wait until Daddy gets home tonight. This was acceptable and we got ready for school.
When we got home in the afternoon, he went to turn the TV on before he headed outside to play, forgetting what we sorted out in the morning, and no matter what I said, he just got upset, more and more upset. So we rang Daddy, we told Daddy 'TV Gone, RT Edwards', and Daddy talked with Jono until he calmed down. After that he was all happy, and when Daddy got home that night with the TV, life was all good again.
Habits, Routine, things have a place to be, and when they aren't there it just doesn't always make sense.
Saturday, August 22, 2009
This week, not so.
Generally we have channel 10 on in the evenings, and he has recently let us know that simpsons is on at 6:00pm, he points to the clock and says the time, and settles in to watch out of one eye while playing on the computer.
This week Sarah has had an ear infection and wasn't allowed to swim, so she's been watching some other shows in the afternoon while the boys have been in the pool.
One afternoon she watched her show right past simpsons time and Jono wasn't watching the time. At 6:30, when Sarahs show finished, he came to me with the tv controller and asked 'Simpsons... On... Mummy?'
I looked him in the eyes and said ' no honey, it's too late, simpsons is finished'
At first he didn't seem to understand what I was saying... Then it started to dawn on him. I could see his face as recognition happened, his eyes went downcast, his mouth fell open and his face fell through the floor.
We spent the next 30 minutes to an hour in tears of dissapointment and frustration. I asked him if he wanted me to get simpsons from the video store (as if we need any more in our lives) but that didn't make sense.
He paced the back yard, yelled at the dogs, cried and eventually settled. Then he spent the rest of the night saying 'Simpsons on tomorrow'
Poor boy, routine... In tv at least, obviously matters to him. The next night there was a double simpsons episode, and life was good again.
Thursday, August 13, 2009
So, lately he's been drawing a range of things that 'could' be what he wants to do with his life. over a few nights in succession.
He Loooooves cooking, and cooking shows, and the recent Masterchef series has been on a bit at home and he's seen a few shows. around 2-3 nights after the show finished he drew a picture from it... it took a few days to realise what he had drawn, but I asked him a lot of thinhs, finally coming to 'is it clothes?' and got an ecsatic yes. He drew the masterchef apron, with the symbol, and with someone's name on it.
The next night, he drew this...
His fascination with space continues, will he perhaps help building a new colony on another planet? Or maybe this is evidence of aliens building pyramids?
then the next night, he drew this... perhaps he simply wants to be a weatherman.
It's not raining at the top, but yes it's sunny in the middle, and it will be raining down south.
It's interesting to see all this coming out of his head in a way that makes sense to us as well as to him.
Friday, July 3, 2009
So far, the concrete shell got made, and then we had a week of rain, so we've had a decent 'puddle' in the bottom of the pool for the kids to splash around in. As it's school holidays I bought a remote controlled tank that transformed into a boat of sorts, and can also spurt water at people (I pity the dogs).
I thought the boat thing would help the kids to play 'with' the water without getting 'in' the water... I was wrong.
Jono would go outside each morning, undo the temporary pool fencing, clamber on down into the pool and sit on the bottom dangling his legs in the puddle. Then he would through rocks and dirt and leaves and sticks in... then he started to take his clothes off.
One afternoon, we'd had workmen during the day fixing the pump and the pipes, they'd packed up and left for the day, or so I thought. I was in the kitchen fixing some food and from the corner of my eye I saw what looked like paper being thrown out of the pool, as I watched another piece got thrown. Being fairly sure the workmen had left I went out to check. The items I thought were paper were actually Jono's shirt and shorts, and he was knee deep in the pool. In the middle of Winter!
5 minutes later, his little sister throws abandon, caution and warmth to the wind and is in the water with him. I gave them both a few minutes, then dragged them into a warm shower to add some colour back into their cheeks.
Since then, he's been doing the same thing most days. I get the feeling he'll be the same when we actually fill the pool. Water babies!
Friday, June 12, 2009
Co-incidentally Jono has been getting us a lot more involved in his world lately, he will call out for someone to look 'et dis' (at this) and point, sometimes we have no clue what he is looking at sometimes we can guess it, occasionally he will give a description, which often goes along the lines of 'mumble, jumble, gargle, wargle, TRUCK'. ahh... he saw a truck. Then we can ask questions like: What colour was it Jono? and he will answer, it's a white one.
We are up to 4-5 word sentences that are impromptu, structured by him and make sense. It's wonderful! So... back to the pool. This next part I'll be doing in pictures, as I simply cannot describe this.
Firstly, our yard kinda 'before' we started all this.
Next, our yard part way through the leveling of the land.
And... here's a mud puddle that grew in the corner.... Yes, that 'is' Jono walking near it to go to the swingset on the top terrace... no he didn't fall in it, on this day. However...
One of the morning we were madly running to get out the door to school, all the kids were dressed, and I was getting the last things into their school bags so we could get out the door. Jono was in the backyard on the swing (which he loves) and I thought he would have no problems staying clean.
I told the kids, 2 minutes and we are leaving.. and the next thing I hear is a little voice at the back door "Mum, Look et dis" I can hear a grin in the voice so I go to check it out. I wasn't prepared. He had slipped and fallen in to the mud puddle, and was thrilled!! At first I raced him to the shower, then I stopped grabbed the camera and took photos with him laughing the whole time.
I marched him back outside quickly for a few more photos. So I didn't have even more mud through the house. Daniel grabbed my phone and took some photos on there as well.
Amazingly, we still made it to school on time!
Tuesday, June 2, 2009
There are many forms of the quote these days, and it's hard to find the 'true' source, some attributing it to Irish Proverbs and Mark Twain. Regardless, the heart of the message is one I find inspirational... live for the now and don't allow yourself to be held back by others.
Recently I've been having a few discussions with people along these lines. We've talked about how people feel a 'pressure' to fit in, which can cause some of them to behave differently. The outcome of this is that many adults wonder who they are, and what happened on their life journey to become someone they are not.
For people with Autism the pressure to fit in may be a heavier weight than the rest of us. The humming, pacing and flapping that many Autistic children do is often frowned upon by society. I'm fairly certain that Jono is completely unaware of the looks we sometimes get from people when out at the park or at the shops... I notice it though.
He usually hums when moving, walking should somehow be accompanied by noise... wether it just 'feels' good, or it's now an ingrained habit I am unsure, but one thing I am sure of I is that as he goes on in life people will ask him what he is doing, make fun of him for doing it and at times demand him to stop. People will be people.
Currently his brother and sister will mimic him at times, and he gets annoyed with them. Which again I am unsure, it may be that he realises they are 'making fun' of him... or that he doesn't want someone else doing it becuase it is 'his'... or perhaps he doesn't like it being brought to his notice. Until they bring it up though, he is largely 'unaware' that he is doing it.
So where does the dancing come into this? My daughter will dance along to a song, and suddenly notice people are watching and get embarrased and stop. She tells me she is worried what other people will think of her. I tell her don't worry, because they are all worrying what other people will think of them.
It's a big lesson to learn, especially for one who is only 6 years old.. but I hope she gets it, I want all my kids to get it. This is one lesson Jonathan can teach all of us.
He doesn't hold back. He doesn't feel judged. He isn't aware of others looks, and he is just comfortable being himself.
This week in your life,
Dance... like you are 'unaware'.
Update: The day after I wrote this, I had a 'sleepover' at my Mum's place, helping her with something. I left my place around 7pm, wearing a trackpants, long shirt and a fluffy polar fleece dressing gown, as I knew we wouldn't go out anywhere. On the way home the next morning, I stopped at a petrol station... and 'almost' took off the dressing gown so I could appear more normal. Then I remembered this, and left it on because it was warmer, who cares what people think!! It was a good feeling :)
Sunday, May 24, 2009
Recently I explored into different ways of making fun foods that suited the gfcf diet and found a few. One which we particularly love from www.rainbowfrenzy.com - the Rainbow Cake.
For this one I simply use a gf buttercake recipe mix and colour each portion with vegetable colours. We've also made them as cupcakes, it's a lot of fun to make and makes the fairly plain but tasty recipe just that little more interesting.
It's also great to get Jono into the kitchen and creating, he enjoyed making these cakes as it was just so different to what we have done before, and he enjoys playing with the colours as we go.
Another great place for GF recipes is omnomicon, the recipe she's got here for the pancakes simply looks amazing, and can be adapted for gfcf very easily. (of course, don't make cheddar ones, but just plain ones if cheese is not on the diet... or change to a soy cheese).
Another great recipe place is Gluten-Free Mommy, this site is a wonderful range of recipes, from breakfasts through to dinners, even multi course meals! In planning dinners week by week this is a great resource for trying a few new recipes to introduce to the family a few new flavours and interests while finding favourites, or new twists on favourites.
If I try something and it doesn't quite work for some reason... well, I have 2 dogs ;)
When I served up I was very pleasantly surprised by how much everyone loved it... it got devoured! I got Daniel to grab the pot and bring it to the table so we could dish up seconds, which we all enjoyed.
Jono enjoyed it so much, he wanted thirds.. and the pot was a little too far to reach, so he stood up, got up on his chair and climbed across the table to reach it. He stayed kneeling on the table and started dishing himself a spoonful, and then another, and then another... all of a sudden Rob grabbed his plate and dished himself jono's spoonfuls onto his plate. Jono grabbed a fourth spoonful and as he lent over his plate to place it on he realised the rest was gone!
He laughed, a little... 'haaa ha', and went right back to dishing up more pasta!
Rob got his extra, Jono got his extra and we all had a laugh with him at the pasta disapearing off his plate ;)
Sunday, May 10, 2009
It's 6:30am here, and I'm the first one awake, I've grabbed my laptop and headed downstairs, it's quiet, the birds are in the backyard on the trampoline, the sun is just getting over the hills and the birdsong is ringing in my ears. I have a cuppa, a water, and am keen to get into my home gym and move my muscles. My children all wanted to sleep together last night so I have 3 kids in the one bedroom, mattresses on the floor and general chaos... they love it.
Yesterday I thought of getting gifts for my children to thank them for making me a mum, for it really has given me so much to be a Mum...to do a reverse Mothers' Day, I ran out of time but the sentiment is there, perhaps this post is my gift :)
My life before kids was a world of difference to what it is now. I have 3 children, which is enough a challenge in it's own right. I had then close together, around 22 months apart, so my oldest was five when the youngest was born, when you are at home, with no car and no friends nearby... this is also a challenge. My second child is Autistic, and yes of course this is a challenge.
Being a mother of a special needs child is definitely a greater challenge, as the 'book' really doesn't have much information covering these type of situations. The needs that occour are different and the ways to handle them depend a lot on how you are within yourself. Are the rewards greater? You know what, Im going to say not really... it's just that you become better tuned at looking for them, and you celebrate the smaller things with more intensity than what perhaps you usually would.
I still remember when Jono was first able to feed himself by himself with a spoon. No, he wasn't holding it right, no it wasn't tidy, but by joves he could do it, he was around 3.
I remember him getting on the internet and downloading and installing games on to the computer, without help, when he couldn't read, and couldn't talk enough to ask us for help, he was 5. We were amazed about this for years.
I remember the first time he came home from school with a piece of paper with his name written on it, it was crude, it wasn't all the letter, but it was his, he would have been 6. Just this year he chose a pair of sneakers to wear on his feet rather than sandals all year long, the confining space on his feet didn't worry him as much, he's now 8.
I've had more than one person comment lately how well I do with Jono, my level of patience, the way I handle him, the way I comfort him. I thank them for the comments, but that has been 5 years in the making. The person I was when I found out about his condition, is a completely different person to the one I am today... and I am grateful.
I am grateful for the lessons to my own heart about what it means to be a Mum, to any child. I am grateful to have Jono in our family, and that we have all 'had' to learn to be more patient with each other. I am grateful for all my children, and I hope they never feel like we 'play' favourites, but that we are treating each one as individuals. I am grateful for my husband, and for his family with their unity and the complete acceptance and love they have for us. I am grateful for my family, my Mother and my brother and the amazing childhood and great childhood memories I have with them.
And I am grateful for my Mum, and the positive heart she always taught me to have, the acceptance of my self and the 'healthy ego', to do more, to try more, to be different and to not be afraid of it. I so hope I can impart that on my children.
So, Happy Mothers Day, to all Mums! May you celebrate your motherhood, in all it's 'glory' and be a better person because of it.
I have to share this, I found it this morning and it's just inspired me so much, I feel it's relevant to every child, to have a mother with this kind of heart, and if you aren't that mother yet, give your children time, they are working on it :)
A little boy was feeling sad. He had been born with a disability that made him walk, talk, and move differently from other children. The little boy was sad because some of the kids in the neighborhood had been making fun of him. His mother took him by the hand and led him to the full-length mirror she kept in her bedroom.
“I’m crippled and useless. The kids say I am.”
“You’re my perfectly beautiful son.”
“Mommy, how can you say that when you know how I look?”
“You’re my perfectly beautiful son. You look like your daddy. You’re lucky, my pet. He’s handsome and strong. Can’t you see? You belong. Be proud, my beautiful son.”
“My feet drag on the ground. I fall down all the time.”
“You’re my perfectly beautiful son. And when you fall down, you get right back up. You’ve never stayed down and I know you won’t now. Get up, my beautiful son.” ... continues
You can read the rest here, at the Baltimore Family Examiner.
Friday, May 8, 2009
We have taken out half the garage and built a new room - which will start it's life as a gym. While getting the gym done, we decided to get a few last things done to the kitchen... and then after the kitchen looked at the bathroom and started to pull that apart, along with the toilet. Next we are tackling a pool and outdoor stuff.
Meanwhile at school, they are gutting and rebuilding approximately 3/4 of the school buildings as well as putting in new buildings. So he's getting it all over in his life (poor boy). I have to say he has handled it remarkably well, and been very settled throughout, probably a lot less stressed or concerned than what Rob and I have been.
As a result of all the reno's, we have had a few classic moments that I really want to share. The first when we had an electrician here fixing the lighting in the bathroom.
The electrician arrived quite early - around 7am, on a weekend, and Jono was sleeping in. He did all his preparation work, cut new holes in the ceiling for new fixtures and got everything ready to the point he needed the electricity to be turned off. He let us know it was going off, we shut down computers, turned off the telly and let him get on with what he needed to do.
Around 5 minutes later, the electrician came downstairs with a huge grin on his face and a story for us "your little fella is quite funny" he says.
Jono had awoken, and as usual headed for the light switch in the hallway to turn it on (it was 9 o'clock in the morning an broad daylight, it didn't need to be on, but such is his habit). He reached for the switch and 'click'... nothing happened. 'Click', still nothing... 'click, click, click, click, click', pause... then a little voice 'uh-oh'. Another pause... then... 'I can't see, I can't see, I can't see!"
We all cracked up laughing and spent the next few days saying to Jono 'click.. I can't see' and he's been giggling with us. Lovely to see he has a sense of humour about himself.
The other incident that's kept us laughing has to do with shoes. We've had a shoe rack near the front door for years, and with the renos have opened another space in a cupboard under the stairs with heaps of room for schoolbags, lunchboxes, iceskates, and the shoerack.
I moved it in one night when he was in bed, so he wasn't aware it had happened. The next morning when he woke, he came down the stairs and noticed it straight away. "Where's my shoes??"... on top of "I can't see" it's been a great week, both for his intiating conversation, and for the family funny bone :)
Wednesday, April 8, 2009
When Daniel hit this stage of life, I wasn't working, I was able to be there with him and I wanted to be with him (first child, I 'have' to be there). Last year Sarah got to go when she was in prep, I was working, and more relaxed about it.. so I let her go in school hours at the time she needed to go, and she was fine.
As I am now working, and Jono is older, and the other two survived going to the dentist, I decided to let him go for his check up with his teachers in school hours. Then the 'fun' started.
The first checkup he did brilliantly, he wore the protective glasses and the bib, he opened his mouth wide, he had no problems with the chair moving up and down, nor with the dentist's mirror, fingers and instruments being in his mouth. His teacher reported all this back to me very proud of him. I was too! Then we got asked to come back for a second appointment.
Second appointment we booked in after school, so I had all three kids with me. He did all as above and was totally comfortable with being checked out. The dental assistant explained which teeth needed work on them and why. He has 5 that need work, 3 with extremely minor cavities, and 2 with slightly deeper cavities, that all need covers or fillings of some sort to keep the 'baby teeth' in place long enough for his adult teeth to grow in with little complications.
Once I had all this explained I gave them the go ahead to do the smaller ones and 'see how they go'. The suction machine got turned on, and that was it.
'No thankyou, No thankyou', pushing it away, wriggling off the chair to get away. I decided very quickly that I wasn't going to make him sit through this as he was actually happy enough to have a checkup, it was just the noise that freaked him out. So we let him go, grabbing the glasses and bib off him and he ran out the door and discussed what the options were. Basically, he has to go to hospital and go under in order to have a few fillings.
Third appointment, with the dentist themselves at the school, same thing - happy to go, happy to be prodded. We talked about whether it was worthwhile to book him in again for the dental assistant to attempt one more time to do the work in the surgery rather than in the hospital. I said it's hardly worth it, and asked them to turn on the suction equipment. He ran for the door and they signed the paper work to get him into the hospital queue, with a 6-12 month wait... but first.. a visit to a specialist.
Appointment Number 4. Yes, I am starting to get tired of visiting dentists by now.
I am on the queue for the specialist appointment, and expect to get in after around a month. I got called two days later with an opening in two days... in the middle of the day. So I organise some time off work and decide 'bag it, I'll take the rest of the day off'. I wasn't sure how he would go and if I went back I'd only get 1 hour anyway, so wasn't too concerned about that.
We get to the appointment a little early, and they have cartoons in the waiting room, which he enjoyed. We got called into the room and once again he's happy about the chair, actually wants the glasses, and is ok with being checked out. They told us his teeth were beautifully clean and the issue is there are smaller fissures in his teeth that a toothbrush can't actually clean that are holding foodstuffs that are causing the decay. It's slow, and they aren't stressed about it, but it definitely needs work.
Then the room next door had a suction machine go in in there... up, out of the chair and running down the hall, but this time towards the noise! He wanted to see what was happening (with his hands over his ears for protection). So, we have him booked into hospital, and are on the waiting list, with one more specialist appointment in a few weeks time to discuss and practice brushing.
And what did we do for the rest of the afternoon? We went shopping, had lunch, got some clothes, bought Easter eggs, and picked up the other two. What a lovely afternoon! Perhaps I should book him in for some more appointments... Hmmmm ;)
Saturday, April 4, 2009
I have for a long time just 'done' the things that need to get done around the house... socks on the floor? I'll pick them up. School lunches need making? Puts one hand in the air, while grabbing lunchboxes with the other. Floor needs sweeping? I'll grab a broom, then the dustpan, and then the mop; and so on... oh, yes, you're a Mother too and you've also been there. So you know what I'm talking about.
Around a year-2 years ago we started giving the kids more chores, and just asking them to help out in general... except for Jono. I was happy if Jono was dressed for the day, had shoes on, had clean-ish fingernails, and got into the car happily for school. Because I was more concerned about just 'managing' to get to school and work on time, he got let off the hook a lot with chores and getting ready type stuff. What I didn't realise was how much of an impact this was having on all 3 kids.
It wasn't uncommon to hear Daniel say "how come Jono isn't/doesn't/wasn't". Daniel was seeing it as unfair that he had to do 'stuff' and help out, for a time we told him he was the oldest and just 'has' to do it... then Sarah got older and started helping too. Sarah wasn't too concerned as she has helpfulness built in to her genetic coding somewhere along the line, and for me I just wanted to 'get it done', especially when I went back to work and had to leave the house on time or risk my job, occasionally late - well that's ok, perpetually late... even if due to an Autistic boy having a meltdown, and my boss worked in the education system and involved in special needs children and having all the compassion in the world... it just didn't sit right with me, I had a time I needed to arrive and I wanted to make it happen... ahhhh commitments.
This week, the amazing happened.
You won't believe it.
Are you sitting down?
Jono packed the lunchboxes!!!
Are you amazed?
If you have a child with special needs I am sure you are dancing with me... I see you, doing twirls in your kitchen and a boogie step. If you don't then I guess you've stopped reading.
I couldn't believe it, he was around me in the kitchen, I had the lunchboxes on the bench getting them ready as I have every day for the past 'x' years, with absolutely no prompting, asking, or direction from anyone he wanders to the plastics cupboard and found for himself a water bottle, and a lid, filled it up, put the lid on tight and put it into his lunchbox. *close jaw now*
Then Sarah said, "get one for Sarah, Water bottle for Sarah", I told her don't worry, it's ok, he did a good job. Next thing, not only has he understood his sisters directions, but he knew what she wanted, and wanted to help out - back to the cupboard, grabs another bottle, and fixes it for her.
Then he stood beside me and waited. I had the next items ready to go into the lunchboxes, so I handed him 3 and he put one in each box. I get the next items and he does it again. He helped me get the rest of them ready.
Even as I write this I'm teary. He can understand things that need to happen to get ready for a day, he is capable of doing them himself, and it makes sense to him. He can help for other people and not just for himself, and he can do it without being asked. Wow!
So Daniel can not ask the 'why isn't Jono' anymore, and feel that he is being treated quite so unfairly with chores, Jono has just won himself a new job and Sarah, I'm sure will oversee Jono to make sure it's done right. All is well, all is very well!
Thursday, April 2, 2009
This is a fairly new event, having been legislated by the United Nations on December 18th 2007, and as such is one of only three disease-specific United Nations Days . The aim of the day? to raise awareness of the condition to the people of the world as a whole and impart the importance of early diagnosis and early intervention. Read more here...
So why should you care? In all reality I don't expect you to. If it's not your child, your family member, your area of work or research or interest I don't expect this to have any impact on you whatsoever.
I was asked on Twitter This morning by @rentedmule 'What is my favourite charity?'
My reply? A tough question for me, of course there is Autism, but there are others and they are mainly for personal reasons. I have a friend whose daughter has Cystic Fibrosis, and that's a big one. I've donated blood and collected money for Red Cross society on more than one occasion, I have a soft spot for Starlight foundation as they grant children with fatal diseases one last wish and I have done Shave for a cure, for people with Leukemia. The article appears here. Do I care about people who are rebuilding after Black Saturday for example... yes, of course, and I have donated to the cause, but they aren't as big a priority to me, as there are so many other things that have personal impact in my life.
I think the idea of Autism Awareness is fantastic, and having it as a UN legislated day shows to me just how much of an impact this condition is having on our world. The other thing I love? They focus on things like early intervention, not on chelation therapies, foods or 'cures'. Simply raising awareness. Wether a 'cure' will ever be found, or its more a matter of people with this condition learning to be able to intergrate better with the rest of us is not something I focus on.
I know there is genetics involved, I know a lot of people say that the 18 months vaccines 'cause' Autism (though personally I'm convinced that is not true, though it may accelerate certain traits), I know there is still so much unknown about the condition. I also know, for me personally, in my life, I have a boy who is bright, loving, smart, has a great sense of humour and is an intergral part of our family, who is Autistic.
Friday, March 27, 2009
That would be me.
*put up other hand*
And my husband.
It's been an interesting few weeks, we've been delving into 'causes' of our weight gain, and looking at our lives and the things that have caused our bodies to gain weight. A lot of the recent weight changes is just 'coping' with the changes in our lives due to have a child with special needs, and the personal guilt, anger, disappointment, resentment and so on through to the point of being 'ok' with it and continuing on with living in a good frame of mind rather than a guilty one.
So with all of that we have been looking at Daniel and what 'could' have caused his weight gain. We went back through the family photos and discovered that when he was in grade one, he was skinny as.. then from around the middle of grade two onwards he started to bulk up.
When we looked at the photos we realised a catalyst for him in his life has been his grade 2 teacher... she used to yell at the students and he would come home around once every 6weeks saying that she was shouting. At the time we didn't think a great deal of it, and tried to tell him perhaps the kids where being naughty. Wether it was that simple or not, it had a massive effect on him. So much so that when he started grade 3 he was so amazingly scared of going to school, we talked it through and we thought it was dealt with and we all moved on...
This year, with looking back at his life in photos, and talking to him about it we realised how much bigger this was for him. Then Sarah started saying that her teacher yelled at the kids and they would all get scared. Mommy Bear awoke at this point raised her head and decided to take it straight to the authorities... the school principal.
The night before I met with the principal I was talking with my Mother-in-Law about life and talked about this latest realisation we had. In discussion she talked about the chances are that Jono has also had a large impact on Daniel and told me about the times Daniel wasn't coping and would clench his fists in anger about things that jono was doing... At the time I was not able to see what was happening with him and I wasn't even aware of this going on. I've since seen it and talked with him about it.
So... in the principal's office we discussed the grade 2 teacher, the challenges of having a special needs child for us as a family and the difficulities that could be there for Daniel. She said that the school was going to have a counsellor once a week to the school to help children with things like this and would I like Daniel in the program. Half of me said yes, and half of me said 'what am I doing?'. Regardless, I booked him in. The counsellor was due in 2 days after I saw the principal... talk abut timing.
That night at dinner we talked with Daniel that he could have this person to talk to about 'anything', about his teachers, about his family life, about Mummy getting sad, about Daddy getting frustrated, about him getting frustrated, everything was open for him to talk about, and that this person can give him ideas and suggestions to help him out both at school and at home.
He was really interested to understand all about the counsellor and wanted to know everything I talked about with the principal. A few days later he had his first session. When he got home we asked him how it all went. He enjoyed it and was really happy to go, so much so that he asked to go again the next day. I don't know how much he really got to discuss that first day, or if he's just excited to be missing out on school, but I'm happy he's happy with it, and that he has an outlet and an option for him.
We all need support, and sometimes it turns up in unexpected ways.
Tuesday, March 24, 2009
I'd come up with the idea of taking Jono to a games arcade at the local shopping centre as we had been to one in the city and he really enjoyed himself. Rob was quite excited about it and spoke with Jono about it quite a few times in the week leading up to the day, Jono seemed rather excited about it as well. On the morning as they headed out they both seemed quite happy to be going. I bundled up the other two and a tag-along friend and went iceskating.
After we all got home it turns out Jono didn't really have a good time at all, he spent a fair amount of time in the arcade with his hands on his ears and crying (which he's never done when we all went together in the city). Rob took him to a Macca's and then for a wander around the shops, but it just didn't quite turn out the way he'd imagined it to.
They where ok when they got home, and Jono was happy enough (he really is a very happy boy) but Rob was quite downhearted about how it all turned out and we talked a bit about expectations and reality and adjusting them as need be. He didn't do anything wrong, it just didn't quite go to plan... and that's ok.
I distinctly remember the times for myself where I've had an outing or a plan in mind of what I want to get done with the kids because it's all I have energy for, or because I think they will enjoy it if they just give it a try.. or whatever reason, but having it go wrong, and usually because Jono isnt coping (or more to the point I'm not coping with Jono not coping). I've had to learnt to adjust, adjust my own attitude, adjust the plan, adjust the schedule, decide to not stress if we are late or have to leave early, and above all, to not blame or throw guilt around on anyone... especially myself.
*and hugs for you too, coz there are days we can all use a hug*
Thursday, March 19, 2009
The first incident was a few years ago now when Rob and Nanna took all the kids up to the local school for a fete. They were in queue for something, and were waiting to buy tickets. Jono was standing behind them with Daniel and Sarah... 'was'... a moment after they turned away, he was gone... there was too many things of interest to look at, and he took off. As soon as they realised (seconds later) they started searching and spent a heart-stopping 40 minutes looking for him, at the rides, in and out of the classrooms, all over the school grounds, get the police involved... and eventually found him in one of the classrooms just having a look around.
He wasn't concerned about being seperated, he didn't know it was good to tell someone where he was going, he just wanted to have a look around.
The second time was around a year ago now, I was taking the kids to Dreamworld for an outing, and Jono decided he didn't want to go. We got into the car, drove all the way there, and he started to panic once we arrived. He unbuckled his seatbelt, threw himself on the floor and started crying... I couldn't get him out of the car, and he just could not move he was so terrified... I still don't know why as we had been there a few times before. To save the other kids being too upset we decided to go to Logan Hyperdome and play in the playground there for a while. They were all happy with that and went into the playground ok.
I had forgotten my phone so said to the kids I'll be back in a second and went to the public phone box to call Rob to let him know where we were so he wouldn't be concerned. In the meantime someone had opened the gate to the kids play area and Jono got out to come and find me... I didn't know he had done this until I got back (2 minutes.. ish). After I realised he wasn't there we searched the local area, got a shop owner to contact the shopping centre guards and fell apart in tears. Daniel said 'well, I guess that's it for Jono' (or something along those lines) and I said 'No, we are not leaving until we find him'. Although in my mind I was thinking 'anyone' could have grabbed him and he could be gone. I was terrified. The guards said they found a boy fitting my description screaming a few shops down the way, we took off and found him, curled up in a lady's lap crying his eyes out.
He simply didn't realise I was at the phone booth and came to find me, at least he knew he was seperated this time.
The third time was last week. We went to the local shops and went to the post office, the electronics store, the toilet, the op-shop and then groceries.. we also had to look at the barber's pole that lit up, the interior water features and the chinese shop. After getting a trolley full of groceries, I decided I would buy that shirt form the op-shop and we went back there. I picked up the shirt, parked my trolley and when to the counter with cash in my hand. By the time I got to the counter, he was gone. I finished as quickly as I could (1 minute) and came back outside to look for him. I recovered my steps in every shop we had been too, and couldn't locate him. With a trolley full of groceries it felt like very slow going to each of the shops to see if I could see him. I was calling his name constantly and got Daniel to check the toilets for him as well... after around 10 minutes my heart was in my throat and I didn't know what to do or where else to look.
I went back up the alley one more time, turned around and saw him outside the shop we were last at... walking along, unconcerned because he knew where we were when he left us, and seemed to think we would be there when he got back. I 'think' he took himself to the toilet, but just didn't respond when Daniel called for him.
So what to do next time? I'm kidding myself if I don't think it will happen again. I had a friend suggest we make a business card for Jono with his name, and my phone number... and he keeps it in his wallet and brings it to the shops or whenever we go out. Great idea, and one I think I'll implement, with a little training this could be a great help and something that can put my mind a little more at ease.
Sunday, March 8, 2009
Wow, it's startling when I make it so simple, what affect has Autism had on my life... besides the emotional turmoil, the lack of 'normalcy', the impact on our lifestyle, the types of jobs we are able to choose, and so on, it's also meant 30 kilos.... of extra weight.
It's taken 5 years to put those 30 kilos on, and a heck of a lot of it was comfort eating. Rob and had been active members and leaders of a church group for 15 years, the majority of it in Sydney, after Jonathan was born we wanted to come back home to be with our families, and continued on with the same church group for a while, but after we got a diagnosis (when he was 2), we felt a huge lack of support from many areas in our lives (whether the lack of support was real or imagined or just the effects of the overwhelming emotion we were feeling or a coping mechanism... I don't really know), and we shut down, for 5 years.
In that 5 years we didn't go out very much, it was far too difficult to go to a park unless it had fences all the way around the play area so we didn't have to be on our feet and constantly running after this child who had no comprehension of boundaries and danger. We couldn't talk with people easily as we 'always' had to have one eye on Jono, and the other eye on the other two. At the church we went to, the building was on a main road and we 'almost' had Jono get hit by a car one time as he raced towards the 4 lanes of traffic one time when he slipped away from us. You can read a bit about that time here.
In that 5 years we started playing online computer games, we had a way to connect with some people, we had fun together, and we had an 'escape', we enjoyed the escape a lot, perhaps too much and would often be online all day and then all night... we also stayed up very late and ate junk food... lots of junk food.
In that 5 years cleaning the house went completely out the window, if everyone got fed from clean plates I was happy with that, if they had clean clothes that was ok and if their bed sheets got washed every now and then, that would do. The floors were a constant mess... Jono had no concept of the rubbish bin or tidying up, and I was too overwhelmed to teach him, so he would eat something and then drop scraps on the floor.
In that 5 years I put on 30 kilos.
I have to say that today, looking at all this its a foreign world, we are still working on things from this time, but a lot of it has changed.
Around a year ago the 'fog' started to lift, I got a job with my husbands company painting an office building, 2 stories, every wall, every cubicle, all by myself. I got to choose the colours, I created something lovely out of something disgusting (and I'm being serious, it had been graffiti'd and left in disarray before they took the building over), I could see the changes happening in front of my eyes, and I lost 5 kilos (around 10 pounds). It was the start.
As last year progressed we gave up that online game and started spending more time with real people, I got a job as a graphic designer, during school hours, and joined weight watchers. I was starting to have communities again... and over the rest of the year lost another 5 kilos.
This year so far, is going great and the Affects of Autism are not as overwhelming as what they once were. I've allready lost a few more kilos, and am aiming to lose the other 20 within the next 2 years. We are planning on putting in a pool in the yard, and are getting more focused on health, nutrition and exercise. I'm also changing standards for the house, Today I can even see Jono's floor!
We are getting there, we've been in a pit, a large, stinky, gooey isolating pit, partly due to our own coping mechanisms, but coming out the other side of it I can also see that we have learned, changed and grown...
... all of us.
Thursday, March 5, 2009
First let me explain, we have 2 dogs, both are Jack Russel Terrier Crosses, and both are outside dogs. At least that's what we tell them around 15-20 times a day, every day... I'm starting to think the dogs are smarter than what we give them credit for.
Sometimes we see a dog poke it's head in the door, looking at us with its head crocked on the side as if to ask "How about now?" This quickly gets followed with an "OUTSIDE" by any family member. Other times we turn around to see the scuttle of dog claws and a tail as they finish running through the house from the front door to the back door, and then other times we have our daughter wake up crying saying their are pigs in her room and we find a dog under her bed... but that's another story.
So these outside dogs have left little presents for us from time to time, and usually in the middle of the hall, this week they left one in the middle of the lounge room floor as we were getting ready to go to school one morning. Jono was having issues with his School shirt and wasn't exactly watching were he was going, I had just seen the Poo and hadn't had the chance to clean it up yet and called out to Jono, "Watch out, Dog Poo, Yucky!". Magically the school shirt was no longer and issue and the "Yucky" was hilarious, the tears that had been their moments before had gone replaced by giggles, then all out laughter.
I had a new weapon!!
Now the reason that Dog Poo inside the house is funny, is simply that it is not meant to be there. One thing that I find is reasonably accurate of people with Autism is that they have a different way of viewing the world. If someone trips and falls down when they were walking, that's funny... not because they fell (and especially not if they hurt themselves) but because it's not meant to happen, people are not supposed to fall over, so when it happens, it's a funny thing to see. The same with dog poo inside the house, it's simply not meant to be there.
For the rest of the week, whenever he was getting sad or overwhelmed about something I would talk about the dog poo, and he would stop the tears, buck up and giggle... and then a few days later a bird did a poo on my car...
Saturday, February 28, 2009
So we've had lots of 'no want it' and tears (from both of us) and he's been throwing the shirt away. It's been in the school rubbish bin, over the neighbours fence, out the car window and so forth. We compromised for a while and had him in a regular shirt with the school shirt on top and that was kind of ok until he moved classrooms and there was no air con, in Aussie summers 2 shirts+no air = sleepy child. So he's found it harder to settle in and be able to concentrate. We went to just the school shirt for a while, but that also had issues. Then his teacher suggested we get him singlets. Brilliant!
He chose what singlets to get, and loooves them, he spent the first week showing them off to his teachers (and everyone else) and is happy to put his school shirt on. Such a small thing can make such a big difference.
It reminds me of the advice I give to new parents. Whatever you do regularly, becomes a habit and what they expect, be it good or bad, if you're happy with what you are doing, continue, if not, change it early!
*Takes own advice to heart*
Monday, February 16, 2009
Back to the weekend though. On Friday I took the kids all shopping to get groceries at Coles to help the bushfire appeal. We walked past a games shop and Jono just wanted to stay and watch, I let him for a little while, then we needed to get going. I cajoled, demanded, dragged, insisted and ended up smacking him to try and get him moving past the shop. He dropped to the floor in tears, I realized we weren't getting anywhere so I stopped and hugged him till he calmed down enough for us to be able to move. 10 minutes later we were in Coles.
While there all three kids were being mischievous as the lines were so long and some old guy who doesn't know us from a bar of soap mutters under his breath, but loud enough for me to hear, something about smacking children. Thankyou random stranger for the input. Grrrrrr
Then we went to a new church on Sunday, and a few people 'noticed' the noise emanating from our corner, not pushy or nosy, and not many of them but on top of Friday, I felt it.
I started to think, we will never be 'accepted' as a family, we will always be people who are different. As a child I strove to be different, but on my terms... Being goofy, funny, silly... This is not on my terms and I don't like that.
So today, He can't wear the school shirt, I don't know why, He can't tell us what's wrong with it, and is totally overwhelmed about the whole idea of wearing it... Both of us.
Today, I'm feeling it.
Wednesday, February 4, 2009
He went and got his shoes on then came into the front yard. After we came out the front he put his hand up to make us stand still then started pleading to come with us.
He HATES ice skating, or he did last time we tried, the room, the noise, the cold, it's all too much! So I had no problems saying no... But he didn't see it like I did. Rob came out the front and sat with him and tried to talk about him and Daddy would do something together.
So Daniel and I head out the gate to the car, and just after we open the doors we here him start crying... nothing too major, but he's obviously sad. We head off and have a great time, pretty much wore ourselves out. When we get back Rob told us it took Jono am hour to calm down, Rob hasn't seen him like that in a very, very long time!
In fact those kind of meltdowns happen only around once every 2-3 months now. Well do I remember the days when meltdowns were pretty much daily. It's kind of odd measuring progress by how often he gets upset, but I'm glad to see the progress happening. :)
Monday, February 2, 2009
Are you hungry? No! Put some food in front of him and he will eat
Do you want to go for a drive? No! Tell him to get his shoes on and get ready and he gets into the car happily.
Pass me the drink/remote/phone..etc. No! Then he will hand it over.
I 'think' he is just testing boundaries a little, but it's really hard to tell.. it's hard enough to tell with the other two! Ah well, as long as he eats, wears clothes in public and gets in the car when we need to get going, it's all good.
Tuesday, January 27, 2009
So this morning he's woken reasonably early, doesn't want 1st day photos taken, won't wear his school uniform, but has put on his shoes and 'seems' ready to go. It's 5 minutes before we head out the door... Wish me luck!
Wednesday, January 14, 2009
Yesterday was my last day of holidays with the kids before I went back to work, so we got in to organising school books, clothes, shoes and etc. I had been through all their clothes and figured out what needed to go the day before and had 4 bags for the op-shop. Grandma was in town and rang asking if I'd like some help school book shopping... for some reason I thought this was a silly question... like some? I'd LOVE some! Anyways, I tried to sound fairly nonchalant over the phone but secured and extra pair of hands, arms, legs and eyes for the day.
So, we started by going to pick Grandma up, then went to the op-shop to drop off clothes, bought a few things we needed and a fair few we didn't then went to the shopping center. In shop number one we got most of a set of school books, socks, shorts and shoes for Sarah. I pulled out around 4 pairs for her to try on and we found one she liked that I was happy with the price of.
Jono then decided he wanted shoes... so he pulled out a pair of lovely pink girly sneakers from the aisle we were in and sat down to put them on. I talked him into a blue pair that only had tips of pink... but he wanted the size 3 (he's not quite a 1). I tried to get him over to the boys shoes but he didn't want anything to do with it, no he doesn't need help, no he doesn't want black shoes or white shoes, yes he wants these ones. I left the 3's on him and decided to do the quick swap at the checkouts, which entailed him taking off the 3's, putting them up to get paid for, and lo and behold after touching the checkout girls hands they became a size that would fit! or a better fit at least, and if I got them home and he never wore them again, at least Sarah had some shoes that she could grow in to.
After this we needed food, so wondered off for a drink. We all sat together and then I said I wanted a few quick things from the supermarket, and Jono could stay with Grandma. The other two came with me and we took off only to find Jono racing towards us down the aisles moments later with Grandma in tow. Ok, so he wanted to stay with me, no problems, got some groceries and headed out. So far, we had taken around 3 hours to get this much done.
I wanted to stop in a ladieswear shop to spend a gift card I had received for my birthday but felt the day was moving on. Grandma insisted we stop and I take advantage of the opportunity, so I did. I found a few things I liked and the assistants put them in the change rooms for me, then I went in to try them on. Daniel and Sarah were playing games around the curtains and the entry. Next thing we all know Jono is in the change room next to me taking off his shirt and placing it neatly on a hanger and hanging it on the hook on the wall, then he puts on this lovely tan top with holes cut into the top, and parades around the shop in it.
Daniel and Sarah couldn't contain themselves.. their brother was trying on girls clothes!! After quite a few giggles and "too big Jono"ses he took the shirt off. I had decided on what I wanted by now, so I was in luck, but Jono hadn't yet though. He didn't want his own shirt back on, found a stripey singlet top and went and put that on. Followed by more giggles and more "too big"s he took it off put his own shirt back on and we headed off.
Today's highlight? Jono trying on girls clothes in the fitting room of a ladieswear shop. At least he knew to go to the fitting room... and even tidied up after himself, now just to work on that at home!
Tuesday, January 13, 2009
This morning after the holidays and school holidays we are very much getting back into the mode of 'normal' routine and we were putting Daniel's iPod back onto his computer (after the earpieces had been borrowed for something else). Daniel had been storing his iPod and the charger for it in a board game that he had received as a birthday present for the holidays so he knew where it was easily.
We went to the boardgame and discovered Jono had found the game and set up the pieces and had been playing with it, and Daniel's iPod wasn't inside... so he started looking, on the floor, under the couch, move the furniture, lift the bean bag, shift the doonas, move the pillows... ok this is starting to get silly.
I was doing something else so I kept saying just give me a minute and I'll help you look, and he was getting frustrated. So I went over to help him look to no avail.
Just then Rob came in the room and asked what we were searching for, we told him and he said - oh it's over here on your computer Mum... and we looked, and so it was!
Jono has found it in the boardgame, taken the ipod and the charger to my computer, found a usb port, plugged the charger in, and put the iPod on it's dock so it could start charging. No... none of us have actually shown him this before he did it without any help. He 'IS' a computer genius!
Friday, January 9, 2009
I was talking to a friend of mine near a park with a bbq, and she was starting to prepare Dinner, I suggested the bbq would be better to use than the stove in her house so we took the food out and started to get organised.. then I noticed it was getting dark and asked her what the time was... she said it was 6:30, and day care closes at 6:00... Panic Stations!! So I took off to go get the kids, when I got in the car I realised her watch was fast and it was 5 before 6, so I still had time.
Then I noticed I wasn't wearing my work clothes, but casual clothes... so if I hadn't worked, the kids wouldn't be in day care... so where were they? I went to the school grounds and found Daniel and Sarah together, not worried, just hanging out, I asked if they knew where Jono was, and he was in the school grounds playing. I asked him where his bag was and he went and got it... and they were all ok... I asked what they had been doing all day and they said they'd been playing and been to the shops. They weren't phased or worried at all.
Then I woke up... what a vivid dream!
What can I glean from this? Don't Worry, they are happy and will watch out for each other...?
Maybe, and maybe I should carry this lesson with me :P
Thursday, January 8, 2009
At the end of the year is usually a time we measure things by, and reflect and look for growth or change, and nothing for us spoke as much as the end of school concert. Every year the special school holds a concert for all the kids to get up on stage and perform to songs, most of the time just actions. At the end of 2007 Jono didn't cope.. at all. For every practice they had, he would sit in the corner with his hands over his ears, screaming 'too loud, too loud' and crying. He was scared, he was overwhelmed, and not coping at all.
For the end of year 2008 concert, he has just grown soooo much, partly I would say due to his teacher during the year, partly due to him getting older and just being able to handle different situations better. For each practice they did, Jono participated, learned and tried his best to do what was being shown to him. He had a little solo part in one song, and he had 3 songs he did. After every practice his teachers came to me and said they were so proud of how he was doing and were really hoping he would be ok on the night.
Then... once we found out the night of the concert... we were already going out that night and had organised babysitting for the kids, Rob booked tickets months previously for a special event for my birthday... aaarrghghghghgh!!! He's doing so well and it looked like he couldn't go!
Fortunately Nanna was doing the babysitting and when I explained the situation to her she said that if it was important to him, she would see how the kids were on the night and attempt to take them... I thought she was either brave or insane.
So, I co-ordinated with his teacher that she would take Jono's changes of clothes for the night with her, Nanna would take my car for familiarity, and Rob and I would leave early and cross our fingers. We also discussed the concert for a few days in advance, that Nanna would take him, that Daniel and Sarah would be with him and that Daniel and Sarah would be the biggest helpers in the world on the night.
We didn't hear how he did until we got back, but he did brilliantly! Nanna took all three and he had no problems 'going for a drive' once they got there they found the hall easily, and walked in the door to have his teacher find them straight away, take Jono and say - let's go get ready... and he was off for his performances. He got changed for the first one, got up on stage and performed comfortably... he actually had a teacher behind him lifting his hands for the movements with the song, and after a while he kept on backswiping her to get away so he could do his thing... cheeky!
He did another 2 performances with one change of clothes with even a spotlight middle of the stage moment for a 'solo' dance. I think we've watched the video of the night around 5-6 times now and are just soooo proud. From last year where he couldn't even listen to the other people practicing, to being on stage, in 3 performances, doing a solo, and having a few changes of clothes... simply amazing!