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
Saturday 28 January 2012
Saturday 21 January 2012
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?
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?
Sunday 15 January 2012
The Party
Last night me and the boys went to a party. A girl that Adam went to school with was 18 and had invited all of us to her party.
It was wonderful......
We arrived about 8pm and the party was in full swing. There were a lot of people there and it was surprising to find we didn't only know people from school but also from Adam's college, from his dancing class and also from some art activities he has done previously.
Lots of younger children were there so my other boys didn't feel left out and no one seemed to worry that there were lots of young children. Some parties that children are invited to I feel they are expected to sit quiet all night.
The buffet opened just after we arrived and there was lots of food for everyone. Adam as usual filled his plate and finished the lot. The younger boys enjoyed the chicken and the cakes.
Then it was time for the dancing. Everyone danced with everyone else. It didn't seem to matter if you hadn't met the person before we all just joined in. Adam and Ronin (5) didn't sit down all night and I wasn't far behind. Nathan who is almost 9 and Mackenzie who is almost 7 were entertained for most of the night by the dad of one of Adam's school friends. He showed them lots of simple tricks with coins which they are still practising today.
We all sang Happy Birthday to Rosie and danced some more. The boys didn't pester me for drinks all evening and it was lovely and relaxed. At 10.30 I said to them we were going to make a move to leave and none of them wanted to go. In the end we stayed to the end and eventually left at midnight after dancing to the traditional Runrig version of 'Bonny Banks of Loch Lomond' Even Nathan and Mackenzie joined in with this which is a miracle.
It was such a good night I am contemplating having a party for Adam when he is 21. It just showed how everyone can join in together and enjoy a night that is relaxed and fun for everyone.
It was wonderful......
We arrived about 8pm and the party was in full swing. There were a lot of people there and it was surprising to find we didn't only know people from school but also from Adam's college, from his dancing class and also from some art activities he has done previously.
Lots of younger children were there so my other boys didn't feel left out and no one seemed to worry that there were lots of young children. Some parties that children are invited to I feel they are expected to sit quiet all night.
The buffet opened just after we arrived and there was lots of food for everyone. Adam as usual filled his plate and finished the lot. The younger boys enjoyed the chicken and the cakes.
Then it was time for the dancing. Everyone danced with everyone else. It didn't seem to matter if you hadn't met the person before we all just joined in. Adam and Ronin (5) didn't sit down all night and I wasn't far behind. Nathan who is almost 9 and Mackenzie who is almost 7 were entertained for most of the night by the dad of one of Adam's school friends. He showed them lots of simple tricks with coins which they are still practising today.
We all sang Happy Birthday to Rosie and danced some more. The boys didn't pester me for drinks all evening and it was lovely and relaxed. At 10.30 I said to them we were going to make a move to leave and none of them wanted to go. In the end we stayed to the end and eventually left at midnight after dancing to the traditional Runrig version of 'Bonny Banks of Loch Lomond' Even Nathan and Mackenzie joined in with this which is a miracle.
It was such a good night I am contemplating having a party for Adam when he is 21. It just showed how everyone can join in together and enjoy a night that is relaxed and fun for everyone.
Friday 13 January 2012
Me Time
I'm very lucky and I do get time to myself now. It has taken a while and while there is nothing medically wrong with Adam his additional support needs have meant that we very rarely asked anyone to look after him for us. Our families are all a couple of hundred miles away and relying on friends isn't ideal Add to that the fact that we have 3 more younger boys and you can see people backing away...... lol
Not working is helping, I meet up with a friend regularly for lunch or exercise - followed by lunch! I do think that hubby feels I should be in the house though making sure it is clean, tidy and dinner made (he should know after 26 years that I'm not that domesticated)
We are also very lucky in that one of my friends fosters children with additional needs and disabilities and this means her daughters have been around different children all their lives. Her youngest daughter is now our babysitter. She is only 16 but has a maturity and ability greater than many of my friends. This has allowed us to go out a little bit more together and I am hoping she is happy to do this for a wee while longer and doesn't find a boyfriend (only kidding but you know girls stop wanting to babysit when they get a boy!)
Adam loves her coming round. She is more like his friend and he doesn't seem bothered that she is telling him to go to bed at a certain time. I also think he quite fancies her friend lol
Good luck to all of you in finding someone who can give you a break. It is the most important thing to get even an hour to yourself to do nothing or something but at least its your choice.
Not working is helping, I meet up with a friend regularly for lunch or exercise - followed by lunch! I do think that hubby feels I should be in the house though making sure it is clean, tidy and dinner made (he should know after 26 years that I'm not that domesticated)
We are also very lucky in that one of my friends fosters children with additional needs and disabilities and this means her daughters have been around different children all their lives. Her youngest daughter is now our babysitter. She is only 16 but has a maturity and ability greater than many of my friends. This has allowed us to go out a little bit more together and I am hoping she is happy to do this for a wee while longer and doesn't find a boyfriend (only kidding but you know girls stop wanting to babysit when they get a boy!)
Adam loves her coming round. She is more like his friend and he doesn't seem bothered that she is telling him to go to bed at a certain time. I also think he quite fancies her friend lol
Good luck to all of you in finding someone who can give you a break. It is the most important thing to get even an hour to yourself to do nothing or something but at least its your choice.
Saturday 7 January 2012
How we cope with the holidays?
We love the holidays. A is a true social butterfly. He enjoys the change in routine, the fact he can stay up late, the friends we have over and the party atmosphere. I think he would have a party every day if he could.
The thing we don't like is that all his clubs and daytime activities stop. We are just coming to the end of the Christmas holiday and some of his social activities have stopped for 3 weeks!! While I appreciate that everyone deserves a christmas holiday I do think that more should be done to provide activities over the holiday times. A lot of our young people like routines and structure and stopping for holidays makes things more anxious. Although A isn't quite as bad as some for routine and doesn't get too stressed it can still be a bit upsetting for him. He tends to know what day it is through what is happening i.e., college and youth club = Monday, college and football = Tuesday and so on. All holiday I have been asked 'is it college tomorrow?, is it football?' Sometimes repeatedly!!!
However, in general we have had some good times this holiday. We have had friends over and family visiting. We have been to the pantomime which all the boys loved (and the adults too), I will be glad to get everyone back to the routine of normal family life though, college, school, and packed lunches. Roll on Monday!
The thing we don't like is that all his clubs and daytime activities stop. We are just coming to the end of the Christmas holiday and some of his social activities have stopped for 3 weeks!! While I appreciate that everyone deserves a christmas holiday I do think that more should be done to provide activities over the holiday times. A lot of our young people like routines and structure and stopping for holidays makes things more anxious. Although A isn't quite as bad as some for routine and doesn't get too stressed it can still be a bit upsetting for him. He tends to know what day it is through what is happening i.e., college and youth club = Monday, college and football = Tuesday and so on. All holiday I have been asked 'is it college tomorrow?, is it football?' Sometimes repeatedly!!!
However, in general we have had some good times this holiday. We have had friends over and family visiting. We have been to the pantomime which all the boys loved (and the adults too), I will be glad to get everyone back to the routine of normal family life though, college, school, and packed lunches. Roll on Monday!
Thursday 5 January 2012
Introductions
Now I've finally managed to publish my first blog, after numerous failed attempts, I thought I would would introduce my family. A is almost 20 and has a severe and complex learning disability (more of that later). We spent the first 10 years of his life coming to terms with having a child with special needs and also looking after him. Then we decided we didn't want an only child and had N who is almost 9 going on 14! We then went a bit mad and had M who is almost 7 and R who turned 5 just before Christmas. As you can imagine our house is never quiet.
When A was born I had quite a long labour and at one point his heart rate dropped but they put in a drip to raise it and let me carry on. When he was born I just remember them putting him on me and taking him straight away to special care - just to keep an eye on his breathing. This was the middle of the night and I had him back by 7am the next morning.
At first everything seemed ok. I didn't really know anyone with a baby and I thought they didn't really 'do' anything for the first year (having had 3 more how wrong was I??!). At his 8 month check his health visitor said she was concerned that he wasn't sitting properly and should be moving around a bit more. There began a round of never ending tests, hospital visits etc etc. I am thankful that I had a good health visitor as she put lots of supports in place, got him into nursery early with extra support and ensured I had lots of information.
Almost 20 years later and we still have no diagnosis. Outwardly he looks no different (well almost!) to his brothers. Inwardly it takes him ages to process information. He can't follow directions - even asking him to get his shoes from his bedroom can leave him confused. He has no concept of danger and although he knows why he shouldn't walk in the road he is unable to judge speeds to allow him to cross a road and cannot equate the fact he knows its dangerous with how to behave. He knows that you spend money to buy things but has no concept of cost or how much to give the shopkeeper or how much change he should receive. He enjoys social situations, but I worry about his safety as I feel now that he likes girls his behaviour is not always appropriate. Because he looks 'normal' and he isn't as 'difficult' to look after as someone with multiple disabilities I sometimes feel a fraud. Then I look at my friend who has a son the same age. She can leave him to look after her younger children, he works, is learning to drive, has a girlfriend, goes out on a weekend and goes on holiday with friends. All things that A is not able to do. Maybe we all feel like this at times?
I worry about his future. Big changes are happening as he reaches 20. His money will change on his birthday as in the government's eyes this is when he becomes an adult. Apparently he will need around £100 a week less to live on as an adult and will need to start paying a client contribution to his support. I also worry about where he will live and how he will cope. We have always discussed with him that he should have his own flat when he is older - but how old. He is talking about it now but I still feel he is too young. He still plays football outside with his younger brothers and their friends. He wouldn't be able to do this if he lived somewhere else. Also would his support ensure that he ate healthily, didn't drink too much coke, got out in the fresh air, went to bed at a decent time! These decisions will need to be taken but for now we're just muddling along as usual.
When A was born I had quite a long labour and at one point his heart rate dropped but they put in a drip to raise it and let me carry on. When he was born I just remember them putting him on me and taking him straight away to special care - just to keep an eye on his breathing. This was the middle of the night and I had him back by 7am the next morning.
At first everything seemed ok. I didn't really know anyone with a baby and I thought they didn't really 'do' anything for the first year (having had 3 more how wrong was I??!). At his 8 month check his health visitor said she was concerned that he wasn't sitting properly and should be moving around a bit more. There began a round of never ending tests, hospital visits etc etc. I am thankful that I had a good health visitor as she put lots of supports in place, got him into nursery early with extra support and ensured I had lots of information.
Almost 20 years later and we still have no diagnosis. Outwardly he looks no different (well almost!) to his brothers. Inwardly it takes him ages to process information. He can't follow directions - even asking him to get his shoes from his bedroom can leave him confused. He has no concept of danger and although he knows why he shouldn't walk in the road he is unable to judge speeds to allow him to cross a road and cannot equate the fact he knows its dangerous with how to behave. He knows that you spend money to buy things but has no concept of cost or how much to give the shopkeeper or how much change he should receive. He enjoys social situations, but I worry about his safety as I feel now that he likes girls his behaviour is not always appropriate. Because he looks 'normal' and he isn't as 'difficult' to look after as someone with multiple disabilities I sometimes feel a fraud. Then I look at my friend who has a son the same age. She can leave him to look after her younger children, he works, is learning to drive, has a girlfriend, goes out on a weekend and goes on holiday with friends. All things that A is not able to do. Maybe we all feel like this at times?
I worry about his future. Big changes are happening as he reaches 20. His money will change on his birthday as in the government's eyes this is when he becomes an adult. Apparently he will need around £100 a week less to live on as an adult and will need to start paying a client contribution to his support. I also worry about where he will live and how he will cope. We have always discussed with him that he should have his own flat when he is older - but how old. He is talking about it now but I still feel he is too young. He still plays football outside with his younger brothers and their friends. He wouldn't be able to do this if he lived somewhere else. Also would his support ensure that he ate healthily, didn't drink too much coke, got out in the fresh air, went to bed at a decent time! These decisions will need to be taken but for now we're just muddling along as usual.
Monday 2 January 2012
Making the Decision
I had been working for the local council for 10 years as an admin assistant in a small community rehab. It was a great job. It was busy but I was my own boss to some extent and the manager believed in giving you the time you needed to look after your family - so I could take an early or longer lunch to attend things at school or take kids to doctors.
When my youngest started school in August I decided to go part time rather than job share so I could pick them up from school. I was told that I may need to move office which I agreed would be ok. I didn't realise the impact this would have on me. When I was moved to a local office where I knew lots of people the change was massive. I missed my old job to the extent that I didn't even want to go to work. I missed seeing service users and the chaos that sometimes entails! I found that I don't really like admin! (A fact I kind of knew but had managed to mask for so long because my previous job was so varied)
After suffering for 3 months I went to the doctors and promptly burst into tears. The doctor was great, rather than prescribe medication she prescribed time and signed me off for 2 weeks initially. She also discussed what I do - looking after the boys, being a housewife etc and how years ago this would have been a job! I am eternally grateful to her for helping me to see that it is ok to want to stay at home and look after your family. I have been given a strong work ethic by my family which led to some feelings of guilt at giving up work - but all my doing no one else is putting on the pressure.
Anyway she signed me off for another 4 weeks which gave me time to look at what money we would receive if I stopped and work out if we could survive. We're actually going to be about £10 a week better off!
Lots of people have asked what will I do? Will I not get bored in the house all day? I know its been the run up to Christmas and maybe things will change a bit but up to now I'm still struggling to find time to spend in the house. I have friends who work different shifts and am able to meet them. I can get the kids to school and then do the shopping when its quiet. I have been filling in forms to claim my carers allowance, housing and council tax benefit. I have been able to make appointments to meet with professionals connected with my eldest son's care and I am loving it. It means when the boys come home from school I am able to do their homework straight away as dinner is already on and I am not rushing round trying to do 6 things at once!
I have lots of plans for the new year - but for now I am getting my house in order, best wishes to everyone.
When my youngest started school in August I decided to go part time rather than job share so I could pick them up from school. I was told that I may need to move office which I agreed would be ok. I didn't realise the impact this would have on me. When I was moved to a local office where I knew lots of people the change was massive. I missed my old job to the extent that I didn't even want to go to work. I missed seeing service users and the chaos that sometimes entails! I found that I don't really like admin! (A fact I kind of knew but had managed to mask for so long because my previous job was so varied)
After suffering for 3 months I went to the doctors and promptly burst into tears. The doctor was great, rather than prescribe medication she prescribed time and signed me off for 2 weeks initially. She also discussed what I do - looking after the boys, being a housewife etc and how years ago this would have been a job! I am eternally grateful to her for helping me to see that it is ok to want to stay at home and look after your family. I have been given a strong work ethic by my family which led to some feelings of guilt at giving up work - but all my doing no one else is putting on the pressure.
Anyway she signed me off for another 4 weeks which gave me time to look at what money we would receive if I stopped and work out if we could survive. We're actually going to be about £10 a week better off!
Lots of people have asked what will I do? Will I not get bored in the house all day? I know its been the run up to Christmas and maybe things will change a bit but up to now I'm still struggling to find time to spend in the house. I have friends who work different shifts and am able to meet them. I can get the kids to school and then do the shopping when its quiet. I have been filling in forms to claim my carers allowance, housing and council tax benefit. I have been able to make appointments to meet with professionals connected with my eldest son's care and I am loving it. It means when the boys come home from school I am able to do their homework straight away as dinner is already on and I am not rushing round trying to do 6 things at once!
I have lots of plans for the new year - but for now I am getting my house in order, best wishes to everyone.
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