Planning is the key

We have just got back from our annual holiday..................... and I'm knackered. Yes there was a lot of driving involved but that doesn't really bother me the thing that knackers me more than anything is what is involved with the holiday. If you don't have an autistic child you will have no idea what I'm talking about...................so let me teach you.

My preparation for a weeks holiday and i don't mean Saturday to Saturday i mean Monday to Friday begins approximately 2 months before the holiday.

First you have to get my two used to the idea of going on holiday. We don't ever go to the same place twice, we never have and we probably never will unless it was something completely special. So we get things like maps out to show them where we are going, do some research online about where the site is what there is to do around there.

Then about a month away from the holiday we talk about the things that we can do on holiday. And start printing off lots of leaflets and pictures of what there is to do.

Then we start putting it all together with the kids in mind of course. We have to timetable things for them and so that they know what they are doing on a daily basis we have a dry and wet weather plan. This is when my organisation skills really come into play.

At 2 weeks before the departure date i start to plan everything. From when and what we are going to eat at what time and where we are going to go. There is some flexibility in the plan, there has to be in case of emergency situations or if we miss something about where to go and what to do when we are there. However, both the boys know what days they will be going out, what time they will approximately eat and where they will eat. Which is easy when holidaying in a caravan park as it is usually the club house or the caravan with one day being out in town somewhere.

There is SO much meticulous planning involved that it really does become a headache at times. This year was no different to any other year. I start the planning and don't get the support on doing it. Get told to just let things go and see what happens. It can't be done with my two boys. They need the stability of knowing what they are doing every day of the week. They need the routine and the consistency.

Summer holidays are the worst. I have 6 weeks of daily scheduling to do for the boys so that there is peace in our household. Without it i end up going mad as the boys nearly kill each other and me. The frustration can be heard over 10 miles away as tempers flare. So i timetable the day with everything that they need just like a school day although no real learning although there is always an element of learning in everything that we do in life.

This holiday was a great success apart from one day which was a bit of a disaster but the least we mention that the better. So planning is always the key in whatever i do as far as the children are concerned. It helps, trust me, as a mum it is my responsibility to make sure that my children are happy and healthy and this is the way that i have to do it otherwise they would have a crazier mum than they already have.

Success only comes with persistance

For the past 3 weeks now a new routine at bedtime has been in play. Originally thought through by John but tweeked by me and it is this:-

1. Thomas' Poo Fun Time (10 minutes)
2. David tidies bedroom (10 minutes)
3. Sunday, Tuesday, Thursday its fun in the bath time followed by teeth foam party and cloudy talc time.
4. On a Monday, Wednesday, Friday and Saturfay it's face washing followed by teeth foam party.
5. Snuggly story time and zzzzzzz time.

The whole point of this was to get Thomas comfortable to do a poo. It has been horrible (as my last blog said) but (and as typing this i'm touching a lot of wood) the routine is working

In the last week it has been relatively easy to get Thomas to go to the toilet. No screaming matches no refusing to go. Bliss, I can tell you. I really thought we were heading back to the doctors again but, fingers crossed, we should be okay.

Now we have our next hurdle ahead of us. Going on holiday. Holidays I dread them, more about that another time. Lets just celebrate the fact that there is one less tantrum happening a day which was making life in the Crocker household miserable.

Night bloggers

ASD and my family

I am the proud mum of two boys, David, who is now 9 and Thomas, who is 4 nearly 5. Both of whom are autistic. David was diagnosed with ASD (Aspergus Syndrome) nearly a year ago now and Thomas is suspected to have the same condition although we haven't had a confirmed diagnosis yet.

As all parents with Autistic kids are aware, routine is the key. My kids are no exception. Before David was diagnosed, I had a feeling that he was autistic and so started reading up on what autism is and what it means for a child who is autistic. I started putting in place schedules and routines in written and picture form so that David could understand what he was supposed to do. Every day it would be a battle to get family to understand. Especially John, my husband. Don't get me wrong he is a lovely man and i love him dearly but when it comes to the children........clueless springs to mind. So routines and schedules that i was trying to put in place stopped working because i was the only one that was prepared to work at it.

I have a whole box folder of tried and failed routines and schedules. It begins to wear you down after a while. You feel as though you are fighting against your family in order to get the order that the kids need to flourish. I know and David knows that he needs a set routine on what he does in the day. I get the question every day "what's for dinner tomorrow mum" this will be at breakfast time. If i don't have an answer he gets confused he thinks "well she should know what we are having for dinner, how can she not know what we are having for dinner, is she saying that we are not having dinner tomorrow". All of these things go whizzing round his head. Until it escalates into a fist of fury or a crying session (but he can't tell you why he is crying). He gets absolutely consumed with the fact that i couldn't answer his question of what we are having for dinner the next day. And if i don't do what i said i was going to do and don't give him enough warning then he won't eat it.

With Thomas it is slightly different. He is not so concerned with asking the question but dinner has to be to his exact specification. He has to have everything separated. He won't eat a bolognise or cottage pie because it has mince mixed with vegetables and pasta mixed in too. So i have to separate it all for him. No sauces are allowed in his food unless it is separate. Red sauce is a small dollop in the corner and it has to be the right corner or he won't eat it. Drinks have to be in the right cup and he can't have anything that is hot.

Violence is something that Thomas is very good at. I have loads of bruises all over my legs and arms from when Thomas is having one of his episodes. It usually escalates quickly and once he is in that place it is difficult to get him out of it. John can't yet so it's down to me.

At the moment with Thomas his biggest issue is going to the toilet. Doing a poo is traumatic for him and we have been to the doctors and they have given us lidocan and lactose for him but he still has issues with it. For months now we have been battling with this. He won't go with John it has to be me and he will only go when his tummy is screaming in pain and it is a case that he has no choice but go. He is screaming and clenching trying not to make himself go but it has to. It is the worst moment for me and for John as we have to try to convince him that everything is alright but he won't hear it.

The last time this happened, a few days ago, i lost the plot. I couldn't cope no more. I was about ready to leave. As a wife, i felt alone as John doesn't understand what the kids need in the way of routine and understanding. Shouting at the them doesn't help as they don't understand what they have done wrong nine times out of ten. I finally broke down in a heap uncontrollable and the penny dropped for John. So John started to put together a routine for bath time incorporating a small period of time when Thomas sits on the toilet. John wrote it and timetabled it and i inputted with what i know. Then i jazzed it up with some colours and pictures to help both the kids. I did three copies, one each for the kids and one in the bathroom. David has taken to it like a duck to water but Thomas has decided that he wants to rip his up. But i will persist.

2010

2010 is nearly over and 2011 is about to begin. While we look at what the last year has offered us everyone seems to dwell on the bad stuff that has happened. With me, it is different. I'm staying positive and concerntrating on the good things that have happened during this year.

2010 is the year that i finally stopped smoking. This was the greatest achievement of my life and i doubted that i would make it.

So what am i going to do in 2011:

Firstly, housekeeping and control needs to be gained about the family. The time has come where i can say enough is enough and get control of what my kids are doing to themselves. It has been a hard year with understanding my children. However, i have read all i can read about Aspergus Syndrome and understand it as much as i can so now i have to control it and control the temper tanturms, violence and other issues with strict routine. So that is what is going to happen and it has been discussed with the whole family and it has been agreed with them all so it should work or should i say it will work because i have the confidence to make sure that it does work.

Secondly, as i have given up work to look after my children i am going to do some casual work and get a bit of money together to go on holiday. We didn't have a holiday (as such) in 2010 just a visit to John's family and so this time it would be nice to have a small holiday for everyone to relax and have fun.

Thirdly, I want to move, we have had our house on the market for the past 6 months and i want to move, i want to get out of Oxfordshire and back to the coast. So before the Summer is over, i would like to move out of this house and move to Poole.

There are other things that i would like to do as well but if i decide on too much then nothing will get done. These three are the most important and therefore have to be completed before 2011 says goodbye to us.

Lets see what happens now then.

The Trouble is..........................................

I was thinking late last night that i prehaps have started doing more things that i should be. Let me list what i do: -

1. Scouts (Beaver Leader) and I love it. The teaching of young people in the ways of the world through fun learning and badgework i get a real buzz from that. I am relatively new to the scout movement and was kind of railroaded into it. My oldest, David, was at Beavers. I used to go every week and would stay with him as he wouldn't like me to leave. Although on occassions i was allowed to and me and another mum, Carol, used to take it in turns to help out. I enjoyed it. With really surprised me as kids sometimes really annoy me. I'm not the most patient person I can freely admit that. But, watching these kids make things and play and the trust that they have in me as, their now, Assistant Beaver Scout Leader, it gives me a real sense of joy. They listen..... which is truly amazing as anyone with 6 - 8 year olds knows if a miracle. I'm still working towards my wood beads at the moment and have about 7 modules to do but I have only been serious about being a Beaver Leader for about 6 months so i'm doing too bad really. I can't wait to get my beads.
2. Campaign to save the Oxford Children's Heart Surgery Unit. That has been my life since April this year and will continue to be so until they see ruddy sense and open the unit. It has been reported that the safe and sustainable recommendations are not going to be available until Next Year which means that Oxford remains a closed unit. Not fair. As the reason why they have postponed the recommendations is because it has been discovered that 3 other units have a high mortality in years 2000 to 2008 but these units remain open and Oxford closed. Where is the sense in that. Where is the sense in them keeping a unit shut and sending their patients 100's of miles away and put them through hell. It makes me soooo mad that i just end up crying over it all.
3. Young Hearts. I am quite active with the charity Young Hearts and have just put myself forward as Vice Chair, there is an AGM coming up and I will need to be voted in but hope that i can be part of it all.
4. Abingdon Drama Club. I am currently rehearsing twice a week for a play. Stepping Out. I'm not the lead but i have had to learn quite a lot of words and there are dance routines as well which are whizzing through my brain.

I gave up work last year because i was dealing with too much, with my dad and mum in hospital, too much pressure from work lead to a nervious breakdown which i managed to stop progressing by getting rid of work and although life (financially) has been very hard it has been rewarding and now rather than a few things on my plate i have a lot of things on my plate and i can feel my stress levels raising every day and not sleeping as well as i should be to maintain myself. But the trouble is.......................... i love doing what i do. I wouldn't give up anything that i am doing at the moment because although it doesn't pay a wage, i enjoy.....in fact i would go so far as to say that i love everything that i do. Scouts, Charity work, campaign and the drama club all of it means something. It means i can express myself in ways that i never thought possible and i am the happiest that i have been for a very long time. I get to spend quality time with the kids. Quality time with my husband and it all adds up. I get time away with courses and feel as if i am appreciated a bit more and respected for what i do.

Heart Campaign

Things have quietened down on the heart campaign front to the point that it is worrying. Still waiting for the final document of the recommendations to come out and for the public consultation. It should be out in the Autumn which should be soon but I haven't heard a date yet so we live in wait until the day arrives when we get finally told what they plan on doing with the Safe and Sustainability of the Children's Cardiac Surgery Unit. It has been a long fight and it will be a longer one to come once we have the finding. So i lie in wait, waiting for the result and listening......

So what happens now.......

Berinsfield 1st Scouts are no more.................well until we can find a leader for them. Sad. We have had scouts in Berinsfield for over 50 years and to watch the final meeting and saying goodbye is sooooo sad. I would love to be a Scout Leader but i'm still training, i have my Beavers, my campaign, Young Hearts, my kids, i don't have the time to give to them right now. I just hope that they have fun at their new troops and that we can once again open the Scouts with a Leader. I suppose it's watch this space really and if you know of anyone that wants to be a leader then let me know.