Horrified!

Yesterday we went into to the city to do some late night shopping. I stopped off at Dusk and Michael took the boys to window shop at the model shop. It was really busy at Dusk, right away a girl went and fetched me a basket and helped me find what I was looking for then when I had all I wanted I went and stood in line behind 2 groups. The front group consisted of three tarted up looking young woman who were the rudest people I have ever encountered, in bitter loud voices they yelled out.. are we getting any service, we have other shit to do you know by this time my jaw has dropped to the floor, what common nasty little tarts they were, honestly they were there a few minutes, they weren't going to pass away, what in the world were they thinking when they decided to treat the staff like that????

On a high note Alec was fantastic, he held my hand all evening, he is having a little bit of separation anxiety at the moment so I think when I said the "lost" word he was happy to hold my hand and stay close, Riley on the other hand whined all evening so that was a bit hard. All in all it was a pretty good shopping event

except for the awful girls, I just don't get that type of behaviour, it is one thing to express disatisfaction with service but that was down right nasty and unnecessary

Transition

5 more weeks of early intervention.

In a word, ok in several words I am nervous, apprehensive and a bit afraid. The centre have been part of our lives for 2 years, and such a big part too. Starting grade one is huge, I know he is taking it all in his stride, I just can't help it. I want everything to be amazing for him, I know this is unrealistic on my part because I know it wont be. In so many ways he will be just fine and in others I know he will have difficulty. I am thinking of setting up a reward system for him and get some work books to do over the holidays. Fine motor is still a real problem, there has been very little improvement in his hand writing and he avoids colouring in and drawing.

I am feeling a bit isolated, no one really wants to know what it is you do to get through the day with out meltdowns and catastrophes happening and you put on the coping face, I'm not even sure you could explain, it isn't as though you know anything else, this is your life, and how do you explain that is can simply be something you say that triggers it... so we say.. yes we are great, things couldn't be better, just after you got home from the shopping trip from hell where your child squealed and ran the length of the shopping centre, then screamed and fell to the floor when you refused a request and some interfering old fool makes a snide comment about how your child is behaving. I know now that I am very tired my patience is wearing thin and I am a bit snappy. I try so hard to keep everything going smoothly but sometimes he is unreasonable and I can't just drop everything and give him 100% of my attention. I know he doesn't understand and that what he has to say is the most important thing in the world at that second, how do i say, well Riley was showing me XYZ you are just going to have to wait, it just doesn't wash, but I can't say sorry Riley step aside, he is only 4. Riley is right into performing at the moment, it is very cute but I think Alec feels a little put out by it and trys to butt in and we end up with a shouting match between the two of them, followed closely by tears.

Add to all of this the inability to keep the house looking even 1/2 way decent, if you read my scrapping blog you know I have a huge pile of laundry to fold, it is still there, some of it even has moved to the lounge room, I was going to fold it last night but I am so tired by the time the boys finally settle that I hung out my 4th load of washing for the day then fell into bed to watch tv in there, I select my clothes from the line for us each morning LOL.

Alec comes first, then Riley and Michael.. house 5th or 6th... well 52nd if you want to know the truth. I feel guilty because I make time for myself but not for the cleaning. I am at that breaking point right now I could easily sit all day staring at the tv or a blank wall. It is hard living day after day trying to anticipate someones needs and dealing with him when the world caves in on him.

I will end this with saying I would do it all over again, even try to do a little more. my boys are so precious I would do anything for them. With Alec my biggest fear is I haven't done enough. It is ongoing, forever which can be a bit daunting but I know what we do now will make him more able to cope and lead an independent lift, as long as he isn't in too much of a hurry to grow up. These guys are my world.

What did you do today?

This is a question I have asked Alec almost every day he has been to school or daycare. last night was the first time he has ever told me. I was thrilled and amazed by the whole experience, to have this type of interaction with him removed much of my exhaustion, some of my worry, made me feel a little less afraid of the future

What did you do with your new therapist at centre session today?

Who??

Candy

Oooooooooo

Well Candy got the parachute out, and we did a new chart, days of the week

and what day is it today?

umm I don't know..

tuuuuuuuuu

Tuesday!!!

what other days are there?

I don't know.. wednesday, thursday, friday...what are the others?

there are 7 days in a week.. Monday Tuesday, Wednesday, Thursday, Friday.. and mummy's favourites, saturday and sunday!!!

so did you do anything else?

yes..in the jungle room I tried to get in the car.. but my bottom was too big.. giggles, you know the car turns into a snake and an elephant, and I did a lion.

For snack Candy came out and sat with me and Bryn, I had a little of my polony sandwich, but didn't have any of my sultanas or up and go

is that was you were hugry when we got home?

yes i think so.

Thank you so much for telling you me about your day

that's ok mum, tomorrow when we have our lie down cuddle I can tell you what I did tomorrow

mealtime management

lots going on, I've just finished 2 days of training at the autism association. Day one was transition to grade one, that was full of information and strategies for making everything go smoothly. Day two was our first mealtime management meeting. This is the beg one. This will bring a lot of changes, changes I have to implement and follow up and do, me, me me me. Wouldn't it be great if someone else could come and do this for me, but no.

I have spent the last two years searching for ways to encourage Alec to eat. He has a very limited diet and can't sit still or stay at the table. So starting from the beginning we will be changing where the boys sit, I will put them both through the program. Our first goal is getting Alec to sit at the table, I will start with an egg timer, use a first and then board... first sit at the table and eat your dinner... then you may play a computer game. Then we also have to do sensory exercises, brushing, squeezing, joint compression and trampoline every two hours. This reduces stress and has a calming effect.

First I am enjoying my last three days of holidays before I start this.

A rift in the family of Autism Speaks

I just finished reading a story in the New York Times about a rift in the family of the people who founded Autism Speaks. I will be upfront and say I am not a big supporter of Autism Speaks because they give money to people who believe autism is an environmental condition. I mean if you are an Australian how is your child's autism going to be caused by a vaccination where our MMR's do not contain Thiomersal, the preservative being blamed for causing autism. If Autism Speaks didn't give that faction and the Cure Autism Now faction money I would be 100% behind them, but all those factions do is draw money away from programs that could actually help people instead of giving them something to blame or some false hope that a cure can be found for their child.

For the record both my boys are up to date with their vaccinations, Alec had his 4 yr needles after we had a diagnosis of ASD, Riley is almost due for his 4 yr needles and he isn't autistic.

I would do anything I thought would help Alec, and we have done intensive speech therapy and almost 2 years of therapy through the Autism Association Early Intervention Centre, and then every waking moment at home is a therapy session, this has what has had results for us. It isn't something someone else can do for you, therapy is hands on full time, we see the results every day.

I yelled

I never yell at Alec, I call out to summons him but never do I yell at him, until yesterday. Sometimes you just get to the end of the line, there is nothing left to haul in and you snap. I've had such a problem communicating with him the last ten days. He missed almost 2 weeks of school and was allowed to do whatever he liked. I know he does hear directions and questions but can look like he doesn't.

I yelled just answer me!!!!!!!!!!

I had been trying to get him to get dressed for school for almost an hour, by this time we are now running late for school. It was awful, he told me he was never going to have a lie down cuddle with me at bed time ever again. This was to be my punishment for yelling.

Sometimes you run out of resources, sometimes you yell instead of walking away. Yelling relieves a little bit of the pent up frustration but neither action gets any result at all.

Getting by

A few steps forward, a few back again, some realisations.

The realisations are sometimes the hardest to deal with. When you realise you can't educate everyone and just because someone else has an autistic child doesn't mean they are going to think the same things are crucial like you do. This means pulling your head in and just tending to your own, you can't be responsible for someone else even if they are WRONG WRONG WRONG.. ok laughing at myself now. We are all always right aren't we, no one else could possibly know better than we do.

So apart from my inner rantings things are going well, Alec is doing well at school, a few things need work, especially his fine motor skills and upper body strength. We finally found something that will keep him sitting still, Command and Conquer, yes Michael taught him how to play "tanks" tanks is now our new obsession, that and Teyla from Stargate Atlantis. We watched a bit of Stargate over the school holidays and Alec and Riley role play, they are the 2 gate guys and they always seem to be rescuing Teyla.

Everything for the fundraiser is going well, once again blown away by peoples generosity, I see another great day coming up.

What is it you believe?

I believe in Early Intervention. Alec is my proof it works.

I don't believe vaccinations cause it, I know a special diet wouldn't help Alec, I don't believe there is a 'cure', if they do find a gene that causes autism and devise a test for it what are you going to do? have that test? abort that baby? There is management, coping strategies and early intervention. But this is my experience and decisions, everyone needs to make their own based on the needs of their child.

The thing is no two autistic children are the same, while one is social and communicative but has severe sensory issues another has no sensory issues but is withdrawn and uncommunicative with a whole lot of different variations in between. Then you have to add in co morbidity (two or more conditions also present) and intellectual disability.

I worry everyday about the future of my child. I will do anything I think will help him, I will never accuse anyone of doing the wrong thing by their child by the therapies they choose, I am only responsible for Alec.

I fund raise for the early intervention centre because I have seen what they can do, it is hands on hard work but so gratifying and I am humbled by the generosity of those who attended or donated last year.

The ages of 3-6 are the most important for child with autism, I have seen my child go from being unable to cope with his surroundings, any form of change or deviation of routine to a boy who communicates, joins in and is in mainstream school. Alec found his environment so hostile all he could do was withdraw to a safe place within himself and he communicated by squeals and noises. It hasn't been a miracle but amazing dedication by the therapists we have encountered and ourselves, for 2 years every minute of the day was a therapy session, thankfully Alec embraced it and loved going to speech, centre sessions or gym (OT) even with everything we have done i still worry I have missed something or could do more but this is a thing I have found many mums experience, we do our best no matter what path we travel.

It's life Jim but not as we know it

When was I here last? it's been a while, we have been busy and sick and just getting by. The weekend has been a very trying one. Alec has been acting out in a very strange manner. This is the second time this has happened and it is usually in response to something that has upset him.

Thursday night he started getting very angry, hitting out, hitting himself and screaming and squealing. This was true rage, he couldn't contain it and all we could do was make sure he didn't do himself any damage. One of the new strategies the psychologist gave us was to ignore all behaviours except good ones and praise those, lets just say this is hard.

We know these stem from incidents, this one from school, we ask questions but they get us nowhere except to make him confused, we worked through it though, thankfully it was a long weekend. I also kept him home today as we have a centre session at 12;30 and it is going to be 42, thought it best he have some quiet time today.

no one thing

bit hormonal and teary tonight, Michael and I have been feeling thankful today. We may have rough times and feel as though we could do more, then we see our baby, he received his first birthday present today, a parcel from grandma. Well he was ecstatic, when he saw what was inside he was even happier, books! Alec loves books.

Now before he could open it we had to play pass the parcel, Michael did the music and we passed it around, when it came back to Alec he said ' ok dad stop the music now' we just cracked up.

Everyday this special boy amazes and thrills us.

All too much

well today was the first day with the full pre-primary class together. It didn't go well.

Alec was very reluctant and argumentative while getting ready, then when we arrived he did well but the moment we walked into the class he came to a dead stop. Alec's aide Helen is my hero, within moments of walking in I was almost in tears, it is so hard to see all the other kids sitting with their parents doing puzzles and greeting their friends, while my little one won't look at anyone and turns away when he is talked to. Helen said you go and I will handle this we will be just fine.

These are the hard times, when it becomes so apparent that your child is 'different' from the others and you know you are doing all you can, but is it enough?

When it rains it pours

icky yellowing green stuff.. poor old Riley is sick, vomiting up a storm. We had to have a quick change of plans at 6:30am. Riley was going to mum and dad's and I was bringing Alec to his centre session at 12:30, now Alec has gone to mum and dad's and I am off to the doctor with Riley.

before Alec and Michael left for the bus Alec is coaching Riley on what you do when you 'choke' and how you need to do it in the bucket. Alec then turned to me and said..

'poor poor Riley, choking is awful'

'now you stay there Riley, I am going with dad and Kim is taking me to gym and mummy will look after you'

I so wanted to go to his first centre session for the year, it is good to touch base with the therapists, plus it is a new place, so while Alec knows he is going to a new place he still thinks he is going to gym (OT) so we will see how all that goes, but he got to catch a bus and a train and to see his mutti and Kim so I am hoping dad takes him to the park, it was what he was talking about as he walked out the door.

Things that make you smile

and your heart sing

Today we went to a birthday party for one of Alec's class mates. For several days proir to the event Alec was quiet adament he was not going, yet today we casually asked him and he said yes.. woo hoooooo.

So we set off and we drove by a complex where we had shopped when we lived in the area. As we drove by Alec exclaimed

WOW This place is amazing would you look at it now! just amazing

He had a great time at the party, ate a lolipop and a few mouthfulls of iceacream, one great thing though was that he tasted popcorn, it was the coloured sweetened variety, but he put it in his mouth and chewed it 4 or 5 times then took it out. He tasted abouy 8 bits, I was so proud of him, I never push anything on him but offer him 'tatses' of everything, which is usually met with a no thank you. I don't know why he put it in his mouth but I hope I can get him to keep trying things.

Amazed and thrilled

Well the school holidays so far have been amazing. Between the teachers and Helen Mirco his aide and the centre girls Alec had a thorough understanding of 'holiday' It has helped amazingly that he has also had dad home and grandma here for almost 4 weeks, it has flown by so fast, i can't believe she goes home in two days. The boys will miss her so much.

We have had no routine going at all and he has coped amazingly, I so proud of his 'go with the flow' attitude right now, I see some friction once school starts and we need to re implement a structured routine. I have a few weeks yet, I am going to enjoy and savour every day, hopefully it gets me through to the next Christmas Holidays!