[charlotte@coventry]

Hello All. 

My name is Charlotte Snowdon, and i am a final year psychology student at Coventry university. I really hope you don't mind me telling you all a bit about myself, and what i am currently up to. I think some of you may well be interested.

I am carrying out my independent research project at the moment. I am focusing on the siblings of special needs children, predominatley those with brothers and sisters who have autism or downs syndrome. I am looking at the coping strategies they use to deal with problems that may arise in their sibling relationship.
To do this, i am asking the siblings of autistic and downs children to fill in a brief questionnaire called Kidcope. There is a version for siblings aged seven to twelve, and a version for aged thirteen to eighteen.
I will of course asked for signed parental consent, and i would also like to add that this research has bein approved by the Psychological Ethics Comittee. 

I have decided to look at this issue for a number of reasons; firstly becasue it is a very, very understudied area. Very little is understood about the way siblings cope, and i feel, as well as they do, that they are often overlooked when it comes to their brother and sister. Secondly, there is hardly any support for famalies of children, or adults for that matter, with autism or downs in my area, and even less for their siblings. I am sure this is the same in many other areas across the UK, and this is something i hope can change.
Upon my graduation in July, i aim to start a sibling support group in my area.

So if any of you would like more information on my research, or would like to help, then please contact me on snowdonc@coventry.ac.uk.
If you decide to help me, a research pack will be posted out to you. Included in this is a prepaid envelope so you can send the completed questionnaire back to me in complete confidence and at no cost to yourselves.

I do look forward to hearing from you all, and thank you for taking the time to read this post.
Charlotte. 

[paula]

Hi!

Good Luck with your research Charlotte. We are unable to help as our children's needs are different but I will pass your information on to a couple of friends of mine who have children with downs.

Hope the support group idea takes off - let us know if you have any questions. 

Paula

[charlotte@coventry]

Thanks Paula ... I would be most grateful of that.

As for the support group, i am quite confident in it. I work at a special needs nursery, and i no i have their vote, as well as the families who have children that attend there. A number of them have mentioned that they have hit sibling difficulties at some point in the past.
I will be trying to go for it about june time once i have finished my exams, etc. I will keep you updated though on how it is going.

Once again, thanks Paula.
All the very best, Charlotte.

[Julie]

Hi Charlotte

Our youngest son as Asperger's which is on the Autism Spectrum, and we have an older Son who doesn't have any Special Needs.  He finds it very difficult at times, which is very understandable, but as he is 4 years older he has taken it on board and copes quite well.  As parents we try to give him some special time of his own, as our youngest son dominates a lot of our time and attention, and I know that this is tough for him.  We make sure that he has some 1:1 time with Mum or Dad to do an activity so that he doesn't feel left out.  As his Mum I do actually feel quite guilty at times, as he doesn't get the same amount of attention as his brother, and this is unfair.  We've talked to him about it, and a Professional (who helps us) also has talked to him about why his brother is different to him.  As he is 12, he is of an age now to understand more.

Through going to a group called Coping With Chaos, through the school holidays, I have found that they actually run groups for siblings.  My son has chosen not to go to this, so far.  I also spoke to another parent at the group and she told me about another siblings group in the area too, so I think we must be quite lucky here to have more than one. 

You are quite right though that there is a need for a siblings support group in all areas.  Good Luck for the future.

Julie

[charlotte@coventry]

Heya Julie,

You are very lucky, and maybe at some point later on your son may choose to go to one. However, i don't supose they suit everyone. And maybe your son, although finding it difficult at times, has managed to cope alone and with his family and friends as support.
I also guess it could be quite daunting to go along, as it would be a new environment, new people, etc. But i guess that depends upon the type of person you are. 

My area has no support groups for siblings, and the support groups for parents are also very limited, for both autism and downs. We have a few general disability groups, but hardly anything that focuses solely on them. I have not even come across a general support group for siblings at all.
I have searched for sibling groups all over the UK and i have found some of course, but not as many as i anticipated. This has made it harder for me to conduct my research, but has made me more determined becasue it has shown me how valuable it could be.

Thank you. 

[Speeds]

Wish you luck Julie

My son has no siblings but he has PWS (Prader Willi Syndrome), this is another syndrome whre siblings, if there are any find it very difficult to cope as the non PWS child is often denied sweets/food etc as the PWS child is not allowed or also, they are asked to eat these kind of treats out of sight of their siblings.

Good luck and keep us posted.

If you want to contact out Family Information Office her details are:

Lucy Skye - Lucy.Skye@wokingham.gov.uk

[Speeds]

Should have said Welcome too 

[charlotte@coventry]

Hi Speeds,

Hopefully i will be able to get a group set up. And i will start off doing it for siblings of children with any disability i think. That way i can see how it goes, and then if i get lots of siblings with problems with one particualr disability i could alwyas do a seperate one for them.

Will just see how it goes. 

[paula]

Coping with Chaos run a very successful siblings group so it might be worth contacting them for any advice. I know that they would be happy to help. 

[abbiesmum]

hi
i am really intressed in this i have been thinking of how my daughters problems are affecting particullary my eldest daughter.
my baby Abbie is 6 months old has a chromasome disorder called Trisomy 9p which is simlar to downs.
my eldest daughter is 9 and since Abbie was born she has been really badly behaved. she loves Abbie and is always cuddling her but i cant help but think that her behavour at the moment is to do with Abbie.
my other daughter is 6 and she is no problem at all she just gets on with things.
kelly

[charlotte@coventry]

Hiya Abbie's Mum,

I have talked to a few parents who have said to me that one of their children is affected more than another. I guess it could be affected by a number of things, such as age, personality, and even the coping strategies they use, which is what i am looking at in my research.
By doing this, if i do manage to get a support service set up, i am hoping i will be able to do some coping skills training (or something along those lines) to help out children, such as your older daughter.

If you think she would be interested in filling out a questionnaire for me then please do contact me on snowdonc@coventry.ac.uk.

Also, please contact me if you would like  any further infomration. I will try and help out as much as i can. I have read a lot of literature on this so i may be able to be of some use.

Best wishes, Charlotte.   

[charlotte@coventry]

Thanks for the suggestion Paula.
I will give them a try,