Aspergus for my now teenager

My son turned 13 last month and it has been a difficult transition for him. He is growing up physically but mentally that is taking its time. Don't get me wrong there are times when he does really act his age and is sensible but most of the time he is happy clowning about and making his little noises which help keep him calm. I allow him to be himself at home as society requires that he conforms to an ordinary person which he finds difficult to sustain for long periods of time. So home is his haven, he act and does as he pleases but this has a knock on effect for his younger brother who hates the noises and flapping that he does. They get on some times but his younger brother is very bossy and demanding which takes its toll on my eldest. It is hard especially in the holidays when they are with each other 24 hours a day 7 days a week but we manage as a family and I keep things moving around the house so no one gets bored. It means I sacrifice my own time and things I do during the week but if it makes the household happy it's not really a sacrifice. 

Sometimes all you want to do it scream

This morning was a complete disaster, I have no idea how it started but it ended with David writing me a note to tell me he was leaving for ever and Thomas running around the bedrooms like he was a chicken with out his head anymore.  It was unbelievable.  I thought it would never end and after calming David down by consistently talking to him and not giving eye contact to him and letting him mouth off at me it was over. 

At one stage I was in David's room and he was trying to hurt himself so I did my usual thing of holding him down, which is a tough thing to do when he is nearly as tall as me and has such a lot of strength, and Thomas came in and started laughing at David and calling him a baby.  How the hell is that supposed to help. 

It took nearly 3 hours to calm David down and to get Thomas to realise what he was doing wasn't helping but OMG I felt like screaming. 

Now everything is calm again and it was like as though nothing happened this morning whatsoever.  Lets hope tomorrow is calm as well but you can never tell in this household.

Summer Holidays

The Summer Holiday's are here at last and the planning and preparation that has gone into making the holidays a success is working very well. I have two weekly schedules on the fridge door so that everyone (that includes me) knows what we are doing and what we are eating. There have been a few hiccups but they have been child orintated.

We have a few hot days and so we had originally planned to go to the park on the Tuesday but David and Thomas said that they wanted to go to the Beach so we went to Boscombe Beach instead and had a wonderful day. Now in the short amount of time that i have had a diagnosis for David I always thought that change wasn't a good thing for him that he needed the consistency but as long as it is them that are asking for the change then they seem to be alright with it.

Today is another example. We went to Wallingford Riverpool on Monday on the bus and the boys had a great time. We took a little picnic and spent the afternoon splashing in the riverpool. One of Thomas' friends was there as well Maxwell and he is a lovely little boy, very shy around people but Thomas really likes him and he is a great influence on him. Thomas asked if Maxwell could come round and play so i arranged for him to come round today. In my original schedule i had a day of movies and painting as it is a wet day with a walk this afternoon to get some air in their lungs but as i had to change the plans slightly i was expecting David to start. Now he has been edgy with me today and the slightest thing is ticking him off but as i put it to him. With Thomas having a friend to play with it means that he can do what he wants to do this afternoon. He can sit in his room and have some time on his own. He is always moaning that he wants space and now he can have some time. So David is quieting sowing upstairs and Thomas and his friend are playing cards downstairs. All is quiet (ish).

I can't ask David what he wants to do because he doesn't know half the time and then he gets stuck and confused. Thomas likes to do things his own way which is the hardest thing really. David likes to be in a regular pattern which I'm finding difficult to help him with. He likes being at school and at the start of the holiday he didn't want to be at home. He wanted to be at school where it was structured. I think David would be happy if i sent him away for the summer holidays to a summer camp/school like they have in America. He was really upset at the very beginning but then i talked to him about the schedule and he was a bit happier. As long as he is active and doing something rather than not knowing what to do then he is okay.

So Summer holidays can be a living nightmare but i have been planning this for 6 months now. I have to be on top of my game to stop the arguments and fighting.

I am starting to introduce work into their day as well mainly for Thomas' benefit but it also helps David. They both dislike it but it is something that they have to get used to.

Anyway that might be another blog depending on how it goes and more importantly if it gets stuck too.

For every action there is a reaction

I was messaging a friend today and relayed what happened to me today in one of my messages and was minded to blog about it as it brings about what living with ASD kids can be like.

I'll start with Thomas. Last Tuesday me and Thomas went to Beale Park with Foundation, because he is in Foundation i get to go with him. We had a wonderful day and i brought Thomas a water pistol. After we got back to school we went to Nanny and Grandads so that he could show him what I had brought him and also tell them about his day on a coach. We left Nanny and Grandads and he left his water pistol in their living room. He wanted it back so he could test it out on his brother but as it was late by the time we got back from eating out that night I suggested that I got it for him tomorrow. He was happy with this. On the Wednesday it was David's school assembly and I mentioned to Nanny so she might come along and watch David has he had a speaking part. Nanny was late and arrived in a hurry after just getting back from the shops. We both went to pick Thomas up and Thomas enquired about his water pistol. Nanny didn't have it although had intended to pick up the water pistol but forgot in her rush to come and watch David. I told Thomas that i would get it that evening as it was David's cub's night and i had to drive past Nanny's house anyway. Thomas got upset and pushed his Nan a few times then threw his scooter at me and started hitting me. I had no idea what was happening but knew that Thomas was upset about something. This was in the school grounds and by the school gates. Every parent stopped and watched as Thomas continued to scream and shout and hit. I restrained him as i normally have to when he gets like this, keeping my focus on him completely. Talking to him as i normally do while the world looked on. 10 minutes and it was still raging. Now any normal mum without a child with ASD will just ignore the child or carry on walking home or drag them home. With an ASD child you can't. You have to deal with it there and then. Luckily one of Thomas' teachers has a 15 year old that also has ASD and so came to my rescue. She took Thomas with her and calmed him down. And it was all because he thought he wasn't going to get his water pistol for bath time.

Now David. Yesterday I discovered that David hasn't been shown his new class or new teacher and he told me that he was getting a little stressed out about it. Usually David gets to meet his new teacher a couple of times and visits his new classroom. So i wrote a little note to his teacher to express David's concerns.

David didn't have his usual teacher today which was upsetting enough for him. He had another teacher who is a lot older and doesn't really understand David or his needs. David gave her the note instead and she threw it back at him telling him that he was to give it to his normal teacher. She didn't say tomorrow or give a day when his normal teacher will be back. If she had done then the following wouldn't have happened.

On the way home from school, as normal, i ask the kids how there day was and David said that he had a bad day. So this is when i normally try to talk to David about what has happened in the day to find out what the trigger is of his mood. I started talking to him and he got off his bike and smashed it into my legs. I asked him why and he kicked me 3 times and then went for my head. I stopped him and again restrained him, he eventually calmed down after a lot of persuading from me and he told me what happened. So you see it's not the fact that he hasn't been to his class yet because he knows that he will get to see it as i will make sure of it because i promised to sort it out for him. He kicked off because his teacher, in more than likely an innocent way, that he should give the note to his teacher. But David didn't know when his teacher would be back. So he starts to panic that he will not be able to give the note to his teacher and then he won't get to see his new class or teacher before he breaks up from school.

Therefore, every action has a reaction and the reaction may not happen straightaway but could take a few hours or longer before an unexpected person gets the reaction of what was said or done. So think is all i ask and be mindful of the problems a ASD child has to face on a daily basis.

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.