Coping with Stress

I think I cope with stress pretty well.  I do get a bit shouty at times - but everyone ignores that, and I sometimes get snappy.  I did get to a point though last year where I was crying all the time.  I had been moved from an office where I had a very varied and autonomous role to one where I was a member of a team carrying out a purely admin function.  I hate admin.  I've done it for over 10 years and it was ok because my role was varied and much more than just paperwork.  Once I got moved paperwork is all I did. 

Anytime I was asked if I liked my new job I started crying.  I hated going in.  In the end I went to the doctors.  She prescribed time!  She signed me off for two weeks.  I woke the next morning feeling great.  It made me start to think about stopping work altogether. 

I was signed off for 6 weeks in total.  In this time I investigated how much money we would have/not have if I stopped.  I discussed it with my partner, my mum, my friends.  I tried to get rid of the guilt I felt at not wanting to work anymore. 

In the end I took the decision to stop. The day I went to see my manager and handed in my notice was the best day ever.  I walked out of the office feeling like a great weight had been lifted from my head.  Its the best decision I've ever made.  My house is no tidier - but I have time to sort things for Adam, to pick the little ones up from school, to go on school trips, help out in school.  I'm also trying to set up a parents group for parents who have young adults with special needs and sorting out Adams support plan.

I go swimming with my friend and we have lunch one day a week. 

I still get stressed, but I am able to cope with it better as I have some time every day to myself.


Specialsaturday
Coping with Stress
The idea behind this is to use Saturdays to spread awareness of the needs, feelings and accomplishments of children and adults with additional needs or autism. Members of Twitter are asked to make awareness posts on Saturdays using the tag #specialsaturday.
Bloggers are asked to write about their experiences of achievement by people who have additional needs or autism on Saturdays. Members of Facebook are asked to write status updates that help spread awareness on Saturdays. Members of both Facebook and Twitter are asked to use the Twibbon that’s designed to spread awareness of the Special Saturday can be found specialsaturday twibbon to add to your profile pictures. Please add your friends and help us spread awareness. People with additional needs have struggled for too long to be accepted as equal members of society and this MUST change.

Epilepsy Awareness

Adam has epilepsy.  I wanted to share when he had his first fit. We already knew he wasn't developing at the right rate.

He was about two and half and we had been out to visit friends locally.  On the way home I knew I needed to buy butter so called into the local garage shop.  Adam was sleeping in the car seat in the back of the car so I pulled to the side of the forecourt and locked the door while I was in the shop.  I could see him the whole time I was in there - about 5 mins. 

When I got back to the car he didn't seem right.  He was shaking all over.  I got in the back of the car and took him out of his car seat and tried to give him a cuddle.  At this point I realised something was badly wrong.  He wouldn't stop shaking no matter how much I tried to soothe him.  I began to panic.  I tried to get out of the car but the child locks were on all the doors and I had to put down the window to open the door from the outside.

I think I thought he was dying! It sounds so dramatic now but I can still feel the emotion while i'm typing this and it was over 17 years ago.  I know I was screaming for someone to help me.  The manager of the garage took me into an office and put him in the recovey position while he called an ambulance.  I don't know if the manager had seen someone have a fit before but I am eternally grateful for the way he remained calm and helped us.  He took the drama out of the situation and by the time the ambulance came Adam had stopped fitting and I could give him a cuddle. 

We were taken to hospital but they thought he had a febrile convulsion.  We were sent home the next morning. 

Anyway I can't remember the next fit really.  I do know that they became more frequent and he had a lot of absences - times when we thought he could be daydreaming but really were small fits.  As many people have said I thought a fit always meant falling on the floor and shaking all over.  Adam's were very rarely like that.  He did have warnings, his right thumb used to twitch and he knew one was coming.  If we could get him somewhere quiet we could often ride this out. 

After much testing he was given medication.  Sometimes it worked straight away.  We've had changes of medication over the years and it took a long time to get him stable. He has had several EEG's and numerous stays in hospital after the first few.

I don't think until it happens to you, you realise how scary it is.  I am a very calm, capable person but I went to pieces.  Even the second and third time I used to rush him to hospital.

He hasn't had a fit for about 8 years! He takes Lamotrigine and Topirimate daily.  He is really good at taking tablets and even asks for them now.  I have asked if we could try and take him off medication but was told by epilepsy nurse that because it took such a long time to get him stable they wouldn't recommend it as he may never be stable again if he starts taking fits due to reduction in medication.  It doesn't affect him - yes we are aware of it.  I always let everyone know just in case but its one of those things. 

When he was being transferred from the children's hospital to the adult epilepsy team his nurse - who we have known as long as he has had epilepsy - said when they did the EEG there were parts of his brain that weren't as they should be and were very different to a normally developed brain.  I can't remember ever being told this when he was a child.

I have found this quite emotional to type, more than I thought I would.

Specialsaturday
Epilepsy Awareness
The idea behind this is to use Saturdays to spread awareness of the needs, feelings and accomplishments of children and adults with additional needs or autism. Members of Twitter are asked to make awareness posts on Saturdays using the tag #specialsaturday.
Bloggers are asked to write about their experiences of achievement by people who have additional needs or autism on Saturdays. Members of Facebook are asked to write status updates that help spread awareness on Saturdays. Members of both Facebook and Twitter are asked to use the Twibbon that’s designed to spread awareness of the Special Saturday can be found specialsaturday twibbon to add to your profile pictures. Please add your friends and help us spread awareness. People with additional needs have struggled for too long to be accepted as equal members of society and this MUST change.

A Radical Idea

I have had my parents visiting this weekend and we have been discussing the welfare reforms and where the jobs are going to come from. I thought I would share my idea with you.

Currently the Government are keen to get everyone out to work including parents.  Whilst I agree that everyone should have the CHOICE (note the word choice!) to work - I don't think that this is the answer to our current problems. 

I would like to see the Government increasing tax credits to allow one parent to stay at home longer.  This could still work out cheaper than paying towards our childcare costs as in the present system.  I think this should be available for either mum or dad but I appreciate it may be mainly mum's that will choose this.

By paying one parent to stay at home I think it would help on several levels.  Those parents who want to be a homemaker can do so without fear of not being able to afford it or of being harrassed into getting an interview. 

Parents would be able to take their children to and from school without using them as an unpaid babysitter

There would be nursery places available for those parents who wanted to work and less waiting time. 

There would be more jobs available as those parents currently working take advantage of this more generous parental package.

I realise that my idea is probably quite controversial and won't sit well with everyone.  I know that as women we have fought for years to have these rights to allow us to go back to work after having a baby and to have the same opportunities as men.  I don't have a problem with that and I am far from 'mother earth' or a perfect parent.

But.......since I have stopped working I think I have realised that a lot of what we were told is not true..... we can't have it all.  Maybe we can try but something loses out.  Either we don't give ourselves fully to our jobs, or we miss something of our children's like concerts, open days etc.  If we manage both of these  we are probably beating ourselves up about our house not being perfect or not having a home cooked meal every day.

When I was working I had a job I enjoyed.  I had a manager that was flexible and if I needed to take time I could.  I only worked 17 hours a week and thought I was coping great.  I wouldn't have said I had any stress.  But I woke up 2 - 3 nights a week for around an hour or two.  I  always said that I didn't need a lot of sleep and that I was like my dad (he gets up regularly).  Since stopping work in November I haven't got up through the night once!

I know a lot of people will probably disagree with me but I really believe that there should be a choice available.  Maybe it wouldn't work - maybe we have come too far and not enough parents see staying at home with their children as a valid choice.

What do you think?

Us Time

We do try to get Us Time - even if it is just in the house, having a couple of drinks together, watching tv, doing crosswords etc. 

Sometimes this is hard to do. 

Not only do we have a 19 year old with a severe and complex learning disability we also have 3 younger boys.  As you can imagine looking after our brood takes a fair bit of time.  We've no sooner tidied up than they've made a mess and we need to start all over again.  Add that to the constant washing, ironing, cooking, doing dishes etc.

Gone is the sponteniety - we need to plan more.  So we try and set aside one night a week when my partner isn't working the next day.  We try and organise a nice meal for ourselves and have a couple of drinks, play music and just spend time catching up with our news.  

This has become a bit easier since I stopped working.  There feels to be less pressure on us as I can catch up with everything while kids are at school and we get on much better as a result.  The other good thing about stopping working to look after my family is that it doesn't matter if its a late night as I don't mind getting up and once kids are at school I can always jump back into bed! lol






Specialsaturday

The idea behind this is to use Saturdays to spread awareness of the needs, feelings and accomplishments of children and adults with additional needs or autism. Members of Twitter are asked to make awareness posts on Saturdays using the tag #specialsaturday.
Bloggers are asked to write about their experiences of achievement by people who have additional needs or autism on Saturdays. Members of Facebook are asked to write status updates that help spread awareness on Saturdays. Members of both Facebook and Twitter are asked to use the Twibbon that’s designed to spread awareness of the Special Saturday can be found specialsaturday twibbon to add to your profile pictures. Please add your friends and help us spread awareness. People with additional needs have struggled for too long to be accepted as equal members of society and this MUST change.

Self Directed Support

My son is getting Self Directed Support.  Is this a good thing?  At the minute I've still not fully made my mind up whether this is a good thing or not. 


When Adam left school 2 years ago he had a place for 3 years at college on a development course and a supported (funded) voluntary postition in a cafe run by an organisation that gives training to adults with learning disabilities.  He also had one day a week at a day centre and when college was on holiday he went to the day centre an extra 3 days a week.  The funding for him to attend the day centre was around £17000 pa

He really liked the day centre.  He had the opportunity to try different activities, he was part of a walking group and they did some educational stuff like keeping yourself safe and relationships.  They could also target any learning specific to the service user if there was something in particular that needed addressing.

He also had the chance to meet girls! He is 19 and loves girls.  Being in the day centre allowed him to have a 'relationship' He had a couple of girlfriends while in there and was becoming quite the heartbreaker.

Anyway things change.  The budget cuts to education has meant that his 3 year course is now a 2 year course and finishes this year.  He has also been assessed for Self Directed Support (SDS) and has stopped attending the day centre.

First let me say we love his Social Worker.  She works very hard to maximise his opportunities and is always available, even if it is just a quick text to answer a query.  However, I don't feel that his SDS is quite right.  He currently gets support from 8.30am - 3.30pm and 6pm - 10.30pm on Friday and 12 - 5pm on a Saturday, he also gets extra support when the college is on holiday.  This support is shared with another young man that he already knows and this allows them to maximise their funding - The cost of this support is around £8,000pa

We didn't really have a choice in whether to take SDS or not. It was promoted in such a way that we didn't know we could keep things as they were or take a combination.  We also weren't given a choice of providers for the support.  It was just assumed that this is who we would use and the board approved it and paid money straight to the provider.  Some of this might be my fault as I didn't question enough, however, I didn't have much knowledge at this time and although I was given things to read none of them were from the Scottish Government and most were about the process rather than our opportunities.

Adam enjoys his support.  On a Friday they go to either the library or the gym and then to a club where the support organisation run a karaoke.  This is good  fun and everyone enjoys themselves either singing or dancing.  On the Friday evening there is a disco organised locally for adults with disablities (mainly learning disabilities).  There are around 200 people attend this from all over the west of Scotland and Adam loves it.  Beer/Girls what more does a 19 year old young man want!!

Saturdays are spent in the main ether bowling or pictures and here is my problem.  I feel that this is an easy shift for the support staff and I think it is more like befriending for a young person than support for two young adults. 

I would like the support on a saturday to give them an opportunity to try different activities or challenge what they like.  Neither of them have behavioural issues, Adam needs support to ensure that he is safe and his money is spent appropriately and his friend is non verbal.   I feel the team leader is not prepared to think outside the box to maximise their oppportunites.  Their activities cost around £30 per week on top of the cost already paid by the LA and while I don't mind paying - after all this is why he gets DLA - I would rather they did things that we can't do as a family. 

I am not sure what the answer to this is at the moment.  We have had a review where the team leader agreed to look at things but up to now nothing has changed.

We also have a small problem of when Adam finishes college.  He will have 3 extra days a week to fill and no extra money.  His social worker is currently looking at voluntary positions for him that do not have to be paid for.  However these may not materialise.  I am dreading the possibility that he may have to spend his days with me.  I love him dearly but he is a young adult and he hates spending any length of time in the house or with me.

This could also be a problem for other families where both parents work.  When your disabled child reaches 16 the Government says you should go out and find a job.  This has been the time that I have found it harder to continue working and this has culminated in me stopping working.  When your child is at school you know they are there from 9 - 3 every day.  When school finishes things are not as secure and there may be days that they are not getting picked up till 9,30 and may be dropped off at 2pm.  How are you supposed to keep working then.

I'm not sure what the answer is for Adam.  Maybe we should look at other providers but I'm not even sure if we are locked into a contact with his provider for a certain length of time.  Probably these are questions I need to be asking.

Special Saturday - What this special needs parent says over and over

The theme for this weeks special saturday is what we say over and over again as parents of special needs children.

My day usually goes something like this:

Time to get up,
(5mins)
Get up,
(5 mins)
GET UP
(2 mins)
GET UP NOW
Get up or your taxi will be here

Have you been to the toilet
Wash your hands and face
Don't hit your brothers
Get dressed
Get dressed
Yes its college today
Do you want toast or cereal
you have to eat
Do you want toast or cereal
No its not football tonight
no you can't have coke
toast or cereal
no time for cheesy beans

take your tablets
have you had your tablets
yes its dancing today
has he had his tablets
No you're not working today
hurry up
take your tablets

Go and clean your teeth
Hey handsome (cos he's usually admiring himself in mirror instead of cleaning teeth!)
clean your teeth
use the towel (not your t shirt)

put your shoes on
where are your shoes
put your shoes on
put your shoes on....
yes you're going to college
put your coat on
put your coat on
put your coat on
hurry up your taxi's here





Hi did you have a good day
what did you do?
did you enjoy yourself
did you have a good day
don't eat that its time for tea
Thats really good
Don't hit your brother
You're dribbling
No you can't have coke
no you can't have beer!
are you ready?
your bus will be here soon
you need the toilet
hurry up
your bus is here
remember your coat
take your scarf
enjoy yourself


Did you enjoys yourself
Get ready for bed
Get your jammies on
Get ready for bed
Time for bed
Take your tablets
Take your tablets
No you can't eat again
time for bed
No you can't play x box
Time for bed

I feel this is quite negative looking compared to what others have written, we don't have much medical interventions.  However we have days of continually repeating ourselves with asking and answering the same or similar questions every day.  Despite that we do have a good time

Setbacks

The theme this week in Special Saturday is Setbacks.  I have really had to think about this one as many things run ok for Adam.  In a way we manage his life so that things that go wrong don't affect him.

The one thing that does upset him and leave us dealing with an angry young man (although I'm sure this is fairly typical teenage behaviour) is when his social clubs/activities stop in the holidays.  Every time there is a school holiday many of his activities also stop.  These range from his football, to his dancing class to his youth clubs.  So along with having no college during the daytime he also has nowhere to go on a night.  As he lives for his social life this can make things very difficult.  He will ask regularly where he is going that day and cannot always understand why these clubs have stopped. 

I understand that everyone needs a holiday, however I think many of these clubs should still be run during the holidays.  As many of our children and young people like routine the fact that these clubs are off at the same time as school/college can be quite a lot of changes to deal with at one time. 

I wonder what everyone else thinks about this?