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.

Quitting Smoking

I have been smoking for over 15 years. I started, stupidly, when i was 18 years old. A friend of mine, who I was very close too, was a smoker and we were at a club, Raquel's, in Gray, Essex. I wasn't drunk but I was tipsy, and she offered me a cigarette. I, of course, said yes, or there wouldn't be any point in me quitting smoking now would there? I say that this was when I started smoking but I first tried a cigarette when I was a lot younger. I was at Woodlands School at the time and was on the mound with a group of girls who were smoking, they offered me one and I tried it, thinking that I was going to be propelled into the cool kid category, but instead, I threw up and coughed and spluttered my lungs up. It was disgusting, the most vile thing I have ever tried in my life. I must have been about 13/14 at the time, and yet at the age of 18 I had started smoking, now when I tasted this cigarette, I wasn't sick or coughed my guts up. And so my journey as a smoker started. Right through college and Uni I had a group of friends that would smoke alongside me, so I was never left outside in the cold on my own.

I smoked up until I was about 20 years when I was sick and tired of getting chest infection after chest infection so on New Years Even 1999, I made a resolution that I would never smoke again.

I didn't and as far as I was concerned, I had become a non-smoker. I met my husband and never told him that I was a smoker before I met him and this continued on until I started working as a Business Operations Administrator for a, now non-existent, cable company. I had been in the job for nearly 2 months and that was it I started smoking again. I kept it from my husband and only smoked at work but then the habit came back fully and I was smoking over 20 a day. I had to tell him and he was disappointed.

Since that time in my life, I have continually smoked, I stopped briefly for while I was pregnant with my two children but soon started again when they were born.

The chest infections and bronchitis came back and I would suffer every winter with a horrible cold and would hardly be able to breath.

So I decided in 2008 that i would have to give up smoking and so in the New Year in 2008, I did exactly what I did in 1999. I stopped. However, this time round, I couldn't do it alone. So I tried, the patches, but they hurt my arm so very much that I couldn't stand it anymore.

I then tried the gum. Yuck. It didn't help and made me feel sick.

I tried the inhalator but that made me smoke even more.

I tried everything, and have been trying everything new in the market since 2008 with no success whatsoever.

Eventually, 2 weeks ago I went to see my local Stop Smoking Clinic and saw the nurse. She asked me usual questions, how many do you smoke? how many do you smoke really? What type? When do you smoke? What have you tried to stop smoking?

We talked for a while and I had been told about a new medicine, Champix, which stops you wanting a smoke. So I asked her about this drug and she assessed me to see if I could take it.

She was concerned, because of my depression. However, she gave me the drug, warned me of the side effects and told me that if I felt suicidal then I was stop the medication immediately.

Week One:

I started off fine with the medication until approximately day 3 when I started to feel dizzy and lost my appetite. I was told to continue smoking throughout and see them again in a weeks time to check my progress. So I continued smoking and with the sickness, smoking was the only thing that made it go away. The sickness got worse and in fact I was sick a couple of times. It was the worst feeling ever. Kids were on their Easter Holiday at the time as well so having to keep them amused when I was feeling rubbish was not an easy thing to do. However, I persisted with it and despite the sickness, dizziness and sleepiness I carried on smoking and carried on taking the tablets.

Second Visit with the Nurse:

She wanted to know when my quit day would be. I have until day 14 of taking the medication to give up smoking completely and then I get another packet of medication to continue on the course. I told her that I would quite on Wednesday 14 April 2010, being day 13 of the programme. I did this, because I wasn't sure that I would be able to stop, I wasn't convinced that I had the willpower to do it. She looked disappointed. I was still enjoying smoking and couldn't see me stopping at all.

Week Two:

My week two started on the Friday 09 April 2010. And I smoked through Friday, Saturday and Sunday. Monday, I was at the doctors with David and wasn't feeling very good myself. I had no energy whatsoever to the point where I couldn't do the kids lunch so I brought them chips instead (something that I rarely do) and my husband had to make dinner when he got home from a very busy day in the office, which was totally not fair on him. However, I didn't smoke all day as I made a deal with myself that I wasn't allowed to touch a cigarette until after I had had my second tablet for the day. I was going to make my cigarette ( I smoked roll ups) and had no papers. I hunted high and low in the usual haunts but nothing, not one. So I had no choice but to not have one. I was sad that i couldn't have one and at the same time really annoyed with myself for getting myself worked up about it. So I went to bed.

That was 3 days into Week Two of the programme and today (Tuesday 13 April 2010) I haven't smoked. In fact, this morning, I put my tobacco and filters into the bin. I have also told the kids that if I am out with them and I go to buy anything like that they are to scream and shout "you promised not to smoke again" which will make me feel guilty. So as off today, I am a person, who is trying to stop smoking.

I still feel rough and sick all the time and still have no energy but I am hoping that that will get better with time. We will have to wait and see.

Day Trip to Bletchley Park

Well today we went to Bletchley Park for their Easter Trail. We took mum and dad and all in all it was a good day. Felt okay this morning for a change. Dad was tired out by about 2pm so came home earlier than we normally would have. The kids did the Easter Trail which was interesting but of course all they wanted to do was to answer the questions given in the trail and move on to the next area, but they are kids at the end of the day. They both loved the computer museum and it brought back some memories for my husband with the first computers that he used. Discovered that they have a computer fair in June so as our tickets last a year we might go back and have another look without my parents as we can access the areas that dad couldn't get too. Was great to have Dad out and about today, he hasn't been out in such a long time and although he was totally knackered by the time we got home he really enjoyed it.

However, the day wasn't all happiness. Let me explain. Dad has an electric wheelchair and in order to take him, mum, hubby and our two kids, we had to take both cars. Now Dad's wheelchair is not a lightweight thing and in order to get it into the boot of my car you need to dismantle it and its awkward. So we got to my mum and dad's and I said that I was going in to help mum get dad downstairs, I should point out that he is usually bed bound since he came home from the hospital (I will explain all this later in another blog) and that he lives in a first floor flat and so we have to get him onto a stair lift and put together his electric wheelchair so it is a lot of lifting and carrying. Then getting Dad into the car is the next challenge that you have face, but my delectable husband decides to sit in the car and watch me struggle getting the wheelchair into the car. I'm used to it so I didn't let it bother me. Then when we left Bletchley Park, he phoned my mum to ask if they were going round ours for a cuppa and dad just wanted to get home, so he suggested that he took my oldest son home and he would meet me there, knowing full well that I would have to repeat the process of this morning again and after walking for a few miles and supporting dad's wheelchair over difficult bumps and holes, my back was killing me.... literally. So dad suggested that we all go back to his for a cuppa. We got there and my husband instead of going the way that leads to mum and dad's takes the road that leads to our house. Apparently he forgot the conversation that was had no more than 45 minutes ago. But he did come realise and help.....eventually. Then instead of helping with dad on and off of the stair lift, he marches upstairs and sits in the living room.....apparently knackered.

All in all a good day apart from the glitches but I surprised myself, I wasn't expecting to enjoy it as I did have the right hump yesterday and although I didn't sleep very well I was quite upbeat this morning.

Now the rest of the week might be something else though, as it is the start of the Easter Holidays for my two children and although we are going to be going out at some stage during their break I am not sure when as it completely depends on the weather. With any luck it won't be raining the entire time or I might just go completely mad as they will get very bored very quickly. So I am planning things. What I call my emergency plans in case the fun things I have planned for outdoors have to be placed on hold. I wonder if I can make "clean their bedrooms" into a fun activity to do, or "help me with the washing". I suppose it is a case of................ watch this space...............