Friday, 9 November 2007

Support

Elissa asked about the support i get.

After C was diagnosed the next few years were a blur of appointments with psychologist, therapists, community nurses etc. Many friends disappeared as they didn’t know what to say to me. Neighbours crossed the street when they saw us coming. I was asked several times if it was catching! It was a long time ago and practically unheard of then. My mother was in denial, and my brothers and sisters all being younger than I am were all away at university getting on with their own lives.

C as a young child was very destructive to himself and his surroundings and smeared a lot, so I couldn’t take him to peoples houses, and he wouldn’t let anyone in ours. He didn’t like me talking to people either in person or on the phone. I could only take C to playgrounds when it rained as they would be empty. Even then we emptied shops and cafes, as we still do.
My world shrank.

I went to support groups, but as other children were not as self injurious as C even those parents avoided us. I ended up running support groups for others, and doing such things as Home start and Face to Face. I also sat on numerous committees. Doing for others was my support.
It is well documented that carers become isolated, and I see it in my own life. I have many acquaintances, but few friends. Because C is away at boarding school, I haven’t even got to know the other parents at the school.
I do however have one really good friend who has been my life saver and continues to be so. My mother is also of great support. My ex husbands family totally cut us off.
And trying to have relationships…...well….... (Vi vi vi voom does that answer your question?!!)
C copes better with life on his own, which in reality has meant I have to. (If you click on this picture you can see the damage C does to his head when he is anxious.)
My other life saver has been my PC! What did isolated carers used to do before the internet?
I think/hope its different now for parents of younger children as autism is better understood.

41 comments:

Top cat said...

This post is why I often say I admire your strength. It's one of those things that life thrusts upon one and I'm sure it's a very emotional thing to deal with but you've done it and continue to do it, all the while giving him total love and acceptance.
I'm not sure if I could stand the test of such a situation.
Have an enjoyable weekend.
tc

Hope said...

You do something day in and day out with a grace I so admire. Much love to you, mama.

Hope said...

How have you been doing? You have been on my mind. Email me if you like hstrueby@aol.com

Suzy said...

You are simply amazing, and so is C.

I think because more children are being diagnosed- and "diagnosis" being the key word here, autism is being better understood.

So much love and strength sent your way.
Wish you lived in the States!!

Love
Suzy

Phil Plasma said...

Isolation sucks. I'm glad you have so many followers here to let you know you aren't alone. It's too bad most of us can't be closer.

Jade said...

I think it's wonderful that you've devoted so much of your time to helping others, and definitely understand how helping others can be therapeutic, but I still can't help but wonder if you're getting your emotional needs met.

Have you ever thought about going to speak with a counselor or licensed clinical social worker about the aspects of being a mother with a child who has autism? That might lend you great support and a place to process some of the tough stuff, ya know?

You're a wonderfully strong and innovative woman and mother, and you deserve a little support of your own, don't forget that ;-)

Much peace and positive energy your way.

Ian Lidster said...

Like other respondents here, I have become a huge admirer of 'you' and your strength and courage.
At the same time (and I know instinctively you've heard it countless times) you must also care for 'you'.
Good for your mother, and what a blessing that is.
And, you do have many friends in this realm, despite the fact we cannot be there physically.

Suffolkmum said...

You do seem to have coped with admirable grace. I'm sure you have had your dark nights of the soul, but your love shines through. I remember doing some volunteer work when I was in the sixth form at a home for children with various 'mental handicaps' as they were referred to at the time. There was a severely autistic little boy there, Xavier, who I have never forgotten. This was 25 years ago, so I was introduced - in a part-time kind of a way - to autism a long time ago.

her indoors said...

with everyone else on this you are a wonderful mum with a beautiful son.
i still cant get my head round the disowning of C from your ex and his family i really cant.

Odat said...

You're doing a great service by sharing all this...I'm sure you're helping someone, somewhere deal with their life 's trails.
Thank you....you're a fantastic example of strenght under pressure.
Peace

Amanda said...

yes a terrific example of strength- especially as a single mom- i dont know how i would do parenting without the other half of the tag team.

Chris H said...

It's all been said of course....try not to be too harsh on people though... it is human nature to shy away from things/people that we don't understand or are afraid of. I can't understand how 'C's' own family can disown him though! I have to be honest here, I would find the smearing difficult to cope with.... even as a visitor. But in saying that, I would visit you if I ever got the chance, cos I think you are wonderful. It is just so sad that certain aspects of life are passing you by (LOVE/SEX!) due to your isolation. That sucks. I hope you have a wonderful weekend.

Sara said...

Very well spoke. Thats heart breaking that you have had to go into Cs isolated world with him..he chose it but you... I'm glad that you have the internet!

Vi vi vi vooom!!!!!!!! said...

You are totally awesome and selfless. x

Maddy said...

I certainly relate to the isolation and timing your visits to anywhere such that there are the fewest numbers of people.

I only bumped into blogging by chance about a year ago and it is certainly one of the safest, cheapest and most practical ways of overcoming caretaker loneliness.
BEst wishes

PI said...

I'm so glad the internet gives you some respite and hope it continues to encourage you to write. You have been dealt an appallingly difficult hand and are dealing with it with grace and courage. Hats off to you.

Cathy said...

Yes, thank goodness for the internet! Have you ever discovered the Special Kids in the UK forum?

Cx

Casdok said...

Thanks Cathy i will have a look. The main one i use is the Princess royal trust for carers.

Joy said...

Most of my support comes from online too. My 'real world friends' are few and don't 'get it'. I am blessed with a wonderful family but even they don't understand what we go through. Best wishes.

Nancy said...

Your strength and dedication to C is only something that comes from Heaven. You are an Angel Mom.

I can't fathom a man or his family turning their backs on their own flesh and blood .... they have lost so much.

Anne Brooke said...

Honestly, I think you do marvellous work - for your family and for everyone who's ever had anything to do with the condition. One only hopes of course that things are easier for those diagnosed these days - but other issues, as you say, constantly arise.

Hugs & love

A
xxxxxxxxxxxxxxxxxxxx

Elizabethd said...

A revealing blog...the isolation is so hard, isnt it. You have put so much of yourself into the support and love you have given C.
Remember, you are a special person too.
I'm so glad you have family support, but so sad that the other family arent prepared to acknowledge your needs.

bullet said...

It makes me so upset that so many people decide to steer away when you need them the most. Would their support stop C headbanging? No. But to know that there were friends who didn't judge, who instead offered help and support and didn't flee from C would at least help in some way, I would hope.
For what it's worth if we ever meet then C can come and wreck my house and I won't care.
Also, this is very daft and I apologise but I've been thinking about his head banging and rhis is pure speculation, but I'm wondering if part of the reason he bangs is because he's almost scared of the emotional sensations he feels when he's happy. The only reason I say this is because when I'm really happy (you know when you get that sort of shaky buzzy excited feeling) a large part of me feels a bit disorientated with the sensation, so I sort of shake myself, so that I am still peased about matters but don't have the almost physical sensations.
I'm probably talking complete rubbish here, it's just I thought that banging the head might give the same feelings of settlement as me shaking (well, it's more of a sort of jolt). If by any chance it might be part of the reason, then could you persuade him gradually to try something like squeezing something very hard, or slamming his hands onto his knees.

Shari said...

You are such an inspiration. I've always believed that God places special children with the people He knows are strong and capable.

Yes, thanks goodness for the Internet.

BBC said...

"He didn’t like me talking to people either in person or on the phone."

Well at least he recognizes and loves you even if he can't convey that.

"C as a young child was very destructive to himself and his surroundings and smeared a lot,"

I'm trying to picture just what you mean by that.

"My world shrank."
That really touched me.

"I have many aquatances, but few friends."
I'm your friend, the cosmos is your friend, did you just feel that light cosmic touch on your shoulder?

Carer is a new word, a new thought to me. Hang in there.... Friend.

Dr. Deb said...

I admire your strength and dedication. And I can feel your love and devotion too.

misha_k said...

I can't even begin to tell you how much I admire you. You're such an amazing mother. From one single mom to another - you're awesome!

Casdok said...

Bullet, thats not daft at all, to me that sounds as though you have something there. Thank you so much for thinking on this one. Not sure that we can redirect him though, but i am going to make sure that every tries.

And thank you to everyone! x

Elissa said...

Thanks for your honesty Casdok, I really appreciate your thoughts and insights. xx

I have found the most heartbreaking thing is the friends that have not so much deliberately turned away, but just stopped making contact (or if they make contact they can't understand why I can't do the things that they do).

Like you, I have turned to online support. I find that there is little judgement in what people 'can't see' and it is often easier for me to make contact with other parents this way (less stressful and less anxiety on my son - and me!)

I hope that one day friends in the traditional way will again become a bigger part of my life, but at this stage I think my son's ASD is just 'too uncomfortable' for most people.

And you're right... what did isolated carers do before the Internet?!?

PS The sharing of your experiences really does help others, and I'm really glad that you have found some comfort in your PC. xx

Jen said...

I hear you about friends dropping away- the good thing is that I know that the four really good friends that I have left will go through anything with me, but it was extremely frustrating for a couple of years to all of a sudden be a pariah just because I had kids with autism. I can understand it to a certain degree- although I like to think that I would have been supportive of any of my friends in my situation, the fact is that I probably would have been intimidated as hell by my poop-smearing son who likes to eat people :-)

I think that to some extent there is more support now for younger families as autism is at least a bit better understood by the general public, but it still seems to me that the families of kids who aren't as high-functioning get left out. I did autism support for years for multiple birth families, but had to stop as soon as I placed my son in a group home, because all of a sudden I became everyone's worst nightmare because I had to "give up" one child. I still find that attitude extremely prevalent in most support groups that I've attended...I'm a "supermom" when they find out that I have triplets with autism, a great mom when they see how well the girls are doing, and then the minute that they find out that my son lives somewhere else everyone gets very quiet and that's the end of conversation with me for the night!

Thank heavens for online (if you can find a good group), and for the real friends and family who stick by. I'm lucky too in that I did meet a man online who was more than willing to be in all of our lives- although he's still a bit intimidated by my son, he's certainly stepped up to the plate and is a wonderful stepfather, as well as a great support for me. They are out there :-)

mumkeepingsane said...

I wish I lived near you. We could be such friends. I've lost most of my friends because Patrick is difficult to do things with and they just don't get it. They're uncomfortable around him. I really only have one close friend left and one friend who I see occasionally but who's great with the boys. It's so hard to be alone. I see such strength in you and I admire it.

Patti said...

Casdok, you are a remarkable mother. I also feel the love you have for your special son.
And I agree with Jade. I'm not sure I can say this in an eloquent manner--You are such a giving and caring person, but you must think of your own needs as well.

The isolation must be difficult.

Marla Fauchier Baltes said...

Boy, can I relate to this post. Losing friends is a hard one. Isolation is terrible. Now that our daughter copes with changes easier we get out a lot more. There was a time when I was stuck in the house with her for days with no sleep. Where do all the friends go during those tough times? I have no idea.

buffalodickdy said...

I really think you deserve a little time away from your constant concern. You need friends, and I'm sure you would be a good one in return. It is not selfish, and I think it really would be good for you. Think about it- then do it!

frog ponds rock... said...

I find it difficult to comment on your posts.. because everyone has said what I am thinking.

Cheers Woman. Stay Strong. I hope it helps a little bit to know that A middle aged, frog obsessed, learner potter and Proud Grandmother Sends Love to You and C.xoxoxoxo
kim.

Angela said...

Support is so important
Supporting you in thought

Angela Ferreira said...

You know... I identify myself with the picture a lot. I am a loner , isolated kind of person, mother of a challeging child and still go to University.

BenefitScroungingScum said...

I think you are incredible Casdok, and C is so very lucky to have you as his mum.
As for support, I think people are scared, and find it easier to withdraw than confront their fears, with all kinds of disability or illness, until it happens to them they don't really want to know. I think this is one of the most positive things to come from the internet though, BG x

DJ Kirkby said...

I can't see any damage...just a shy little boy.

Casdok said...

He has a hard bony ridge where his skull has thickeded, from repeated banging. Thats why there is no hair.

Mary P Jones (MPJ) said...

I have experienced that isolation too. My son's ability to be with people is improving, but it still takes a lot of energy (on his part and on mine and on those we are getting together with) to have others over or to go out and visit. I'm so thankful for the Internet. I don't know what I'd do without all of my "imaginary" online friends.