Tuesday, 13 November 2007

A concern for all parents

On the train on my why up to London to meet But Why for the first time, I was thinking what if her blog is a front and she’s some sort of mad axe murderer? (she wasn’t by the way, she was lovely, and we did have a laugh about it!) I was also thinking about DJ Kirkby’s blog that I had read that morning, as she had written before she dies she wants to see her sons grow up to be men.
So if I am about to be hacked to death by mad axe woman, what will happen to C?
This is something all parents think about im sure, but for us with our children so venerable it is a big concern.
C has been abused over the years in one form or another and that is with me here to protect him. C cant talk or sign, so who will advocate for him? My siblings all have their own lives, my friends have their own disabled children.
Who will make sure C wears decent clothes, has the latest DVDs, who will notice when he is ill, or fight for him for what he needs?

And a big one for me, who will make a fuss of him? Who will give him love?
There is a possibility that C could die before me as his head banging is so severe. But I obviously don’t want that to happened or I wouldn’t be doing everything in my power to help him.
So it is a real worry. Its such a big subject yet its something we dont like to think or talk about.

48 comments:

QUASAR9 said...

Alas Casdok,
none of us may be indispensable
but some of us will be hard to replace.

Glad your 'blind' date didn't turn out to be a mad axe murderer. I think the risks are alaways greater for young people. As adults we should be able to ensure we meet strangers in a 'safe' public place.

Though you wouldn't already think so on a Friday or Saturday night when young girls (and young men) venture into the unknown with the unknown - not knowing with what disease or next to what psycho they'll wake up the next day.

But on the grand scale of things, seems we do pretty well: survive & multiply - despite plagues, world wars, and whatever else life throws at us.

PS - If your travels bring you my way, don't forget to give us a call. I keep the axe under my bed.

Casdok said...

Thank you Quasar9, but you may need it to help undo the knots!

Crystal Jigsaw said...

I think about this too for my daughter's sake. But we have to make the most of the time we have together. Can't you find a guardian to take over should anything happen - morbid as it sounds.

Crystal xx

DJ Kirkby said...

I agree with you it is a huge concern. CJ has some sound advice and Chopper and I have done exactly that, we have legaly named guardians in place for N3S.

Elissa said...

Wow, this is huge. I think it's possibly one of the hardest things for a parent to consider - who will give my child what I give them? (Especially if the child has special needs!)
The decisions that we have worked through for our children have been hard enough, and that's assuming that our son will be able to care mainly for himself by the time he is an adult. I can only imagine the struggle you face Casdok.
All I know is that whatever decision or situation that is worked out, it would take a lot of trust and a lot of faith.
xx

PS Glad you managed to avoid an axe murderer!!!

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

I guess the only option you have is to line up a care home for him, which I'm sure would break your heart doing, but if it makes you feel better, maybe you should be looking into it, so at least you can put it in your will 'in case' anything ever does go wrong.

Horrid horrid thought. x

buffalodickdy said...

Get a plan together. Hopefully, that will give you some peace while you're still here...

Casdok said...

C is going into an adult home next year.
But its still all those little xtras that a home dosnt provide.
As yet i dont have anyone i could appoint as a guardian.
But who knows what the future holds!

her indoors said...

phew glad you survived the meeting of the blogger! i am hoping to meet a fellow blogger in the States next year, my son is mortified! says he wont relax till we are back home LOL!
A lot of good advise you have been given about who will care for C, this is not an easy thing to do, yes C can go into a home but it is the love that you want to make sure he has, you say your siblings have their own families, have you talked about this with them? would they see C and give him that extra love?

Jen said...

It's a huge concern for me too, and one of the few things that I seem to be able to just not let myself think about. Even though we've got some good people in our lives (and the kids' dad is still pretty involved), there still isn't anyone who could do close to the job that I can with them.

We're also starting to get motivated to look into the financial end of things- we have "special needs trusts" in Canada that you can use so that your child's inheritance won't interfere with their government support money.

So much to think about, and so scary.

Casdok said...

Yes thats exactly it, finding someone who can do the job and give the love that i do.

My family find it hard to give him that love now. Which is not enitrely their fault as C dont let people get close to him.

MOTHER OF MANY said...

I was almost 40 when I had Beauty so I have been thinking about this constantly since she was born.
She has 5 older sister who have agreed to care for her but I still worry.I know they will love and care for her but it makes me sad to think that one day she will not have my love and care and I wonder will she understand.

Simple Mindz said...

I think about things like that a lot. My daughter (whom is not autistic) is 16 and I constantly worry what would happen to her should something happen to me before she grows up.

Ivy said...

how about your lif saver? He/she might be the person ...but than again you might have thought about that a dozn of times. Yes you are right even parents of "normal" (stange word for children) kids have theese worries. I know parents who never fly on the same airplane as it might crash and leave their kids orphaned.I am a strong believer in fate.If you do everything in your power to leave him as well settled as possible things that are supposed to happen will happen. (if you understand what I mean)

BBC said...

True, it is a difficult thing to think about, and solutions are difficult to find, figure out.

In this country I suppose that he would be put in some kind of a care facility. That is a big industry here.

With luck he would find someone that had compassion for him, be an advocate for him, there are people like that. Maybe someone that your spirit flowed through.

But to love him as you do? Questionable. Maybe it's best to assume that he would be well cared for.

mumkeepingsane said...

Oh! I know this fear. I hate talking about it because I just know it will consume me.

We have appointed close friends (who choose to be childless) to raise our boys if something happens to us. But now I worry about what will happen to Patrick specifically if our friends die. *sigh* Because there's nobody else. We are also putting together a Henson Trust to provide for him financially as much as possible.

BBC said...

"I still don't understand why you needed to continue wearing it after we had established identities."

Ha, ha, you sound like a bit of a clown or actor. Comfortable in your own skin, that is good. Hugs.

Chaoticidealism said...

I am beginning to think that autistic people will just have to defend each other, or who will do it? People who can communicate, advocate for those who can't; people who can care for themselves, care for those who can't... I don't know of anybody else who is willing to help, especially since they see us as horrible emotionless, soulless beings.

I am going to be an engineer, and I am going to design communication devices... at least that's something. My Aspie mom is already an occupational therapist, though she doesn't think she's an Aspie (long story, but despite that she's gotten kicked off jobs because she insisted too much on helping people instead of just fulfilling her official duties... very much admiration, Mom).

Who will help your son? I don't know; but I wouldn't be surprised if it were another autistic person. The way many people treat us, we are starting to think we have no choice but to help each other the best we can.

Phil Plasma said...

My suggestion is to do whatever you feel is best, and even though it is not nearly as good as what you are able to provide, it may be your only option. If it is your only option, why worry? Once you are dead there is nothing more you can do.

I figure I must sound rather cold, but if you plan now to have someone or someplace care for him and you do a lot of research and find a place that will be reasonably good for him, as there is nothing more that you can do, it is wasted energy for you to worry about what will happen to him.

JUST A MOM said...

Oh I was just the other day thinking about this. (why no clue) It is scary ,, HOPEFULLY you won't have to worry about this too much. I am afraid it just might consume my days if I were in your shoes. hang in there...

I love the kitties too

abstractjenn said...

First of all if you ever plan to come to the US - please let me know. I would love to meet you in person.

This is a real issue for the mom of the two boys that I help out with. But I can tell you - if something happened to her tomorrow. I'd take both of those boys in a second. I'm sure if I met you and C I'd feel the same way.

Marla Fauchier Baltes said...

We too worry about this. No one can do as good of a job as mom can.

Odat said...

That is a big concern to worry about....like others have said, come up with a plan so your mind is someewhat at ease.
Peace

Elizabethd said...

It is so hard isnt it? When I was first divorced it weighed heavily on my mind too, and i appointed guardians for my children. But how difficult if you arent sure who to trust, maybe a member of family for whom you could write your wishes down, very succintly.

Sara said...

A scary thought indeed...

captain corky said...

That's a lot to worry and think about... And it's something that I need to look into and deal with now since I have a son.

Cathy said...

This is something that Hubby has been putting his head in the sand about for years. We have no one really except our older son and we don't want to burden him for the rest of his life. If he looks out for his brother it then should be by choice rather than necessity.

Cx

Casdok said...

Thanks Cathy, thats why i thought i would bring the subject up!

Suzy said...

My friend Dorrie who has an 46 year old autistic son worries about the same thing. In Jason's case there will be a few people that will take Jason out, but Dorrie knows the reality of knowing that no one can take her place as his mother.

Tough situation. My thoughts and prayers are with you.

Love,
Suzy

But Why? said...

Mwa ha ha ha! Another one fooled...

I love the picture. I'm on the lookout for a new profile pic, seeing as the current one makes me look like I'm suggesting I'm a closet alcoholic...

Paul F. said...

You ask some tough questions.

Casdok said...

Thanks! I like to get people thinking!
Tomorrow i promise i will post an easier question!

Anne Brooke said...

It's a real problem. I haven't got any wisdom at all, I'm afraid (so no change there then!!) - but my heart goes out to you both. Sorry - I know it's a cliche but it's the nearest to what I can say.

Hugs

A
xxxxxxxxxxxxxxxxxxxxxx

Niksmom said...

Oh boy, Niksdad and I got as far as asking some dear friends to be Nik's guardians "in case" but we've not got things resolved in any real fashion. We, too, bury our heads in the sand and pray we never die. Seriously, we know we will and yet we cannot face the painful realities of planning.

Let's hope tomorrow's question is something light and fluffy, please?? ;-)

Ian Lidster said...

Your fear is, of course, one that is shared by all responsible parents. However, in your case it's compounded by C's affliction.
And, as for linking up with an 'unknown', it is always a risk. Even in the blogworld there are creeps out there. But, I am happy that your meeting was all that you would have hoped for.

Anonymous said...

Yes thats exactly it, finding someone who can do the job and give the love that i do.

Actually, the person doing the job of general caregiver, if they are doing their job correctly, should not be giving love like a mother does. They should be enabling him to have those loving relationships with other people.

Speaking from experience, and from what I've heard from people who've been in the field a long time, mixing the two is destined not only to not work, but to either mangle the power relationships badly and/or leave him devastated when the person stops working for him.

david mcmahon said...

If only you knew how profound this post really is, not just for you and C, but for every parent in the world.

Our greatest fear is always the safety of our children, and in C's case, there is even more cause to protect him.

God bless both of you.

Cait O'Connor said...

I feel your siblings may be there for you, perhaps you should discuss your fears with them.

Top cat said...

wow that's a tough one!
tc

MY OWN WOMAN... said...

Casdok, sometimes I feel like a stranger ease dropping on your private conversations with people who share the same thing you do.

The stories you write of "C" have become more than stories but a reality that thousands of people endure, love, and cherish as you do. Your stories allow me a gateway to converse with one of the people I work with who has a child with autism. Before, it was merely "How is T?" But now the questions and the conversations are deeper and I think to him and to me, more meaningful. I think he enjoys talking about "T" with me as I enjoy listening to his stories which, I have to admit, may not be funny, but are amusing. He allows me to laugh, which in turn allows him to laugh.

I do not have a child with disabilities. Both of my daughters are grown and would be able to function in the world independent of me. But I still have the fear......will anyone love them as I do? Your fear must be doubled.

Jade said...

I think this is a thought of anyone's that lives or works with these kids. But definitely not a healthy one to fixate on. Do your best to put precautions in place, have legal documents always at the ready, have have faith that there is a plan for the two of you.

This worry is a heavy one to bear, and in my opinion definitely not fair to any parent but you are smart, innovative, and a great mom and C is very lucky to have you on his side. You will process this fear out and have a great plan. I know it.

Much peace your way

Elissa said...

Hi Casdok!
Please stop by when you get a chance, I have an award waiting for you to collect... you already have it but I think you deserve it double strength!!!
Elissa xx

Angela said...

As parents we can't help but worry.
The love is so important.

Shari said...

No one wants to think about the "d" word. And making a will. It is something to think about. Maybe down the road, you'll meet someone you know will look out for C like you do.

Casdok said...

Thank you Anon,
I have seen what you have said happen as well and i think it is very importenat that parents are aware of this. So i will do this subject again at a later date.

Linda and her Surroundings said...

It is hard enough to find a guardian for a child without disabilities. The concern a parent has about who will love and care for their child should something happen.

It is such a natural thing to worry about these things but you do have to otherwise finding a solution would never happen.

Hopefully in the Adult Home there will be staff who are caring and nurturing people. There may be some comfort in that thought.

My mother always says that no-one loves a child like a mother loves her child. It has stuck in my mind since.

Patti said...

this is a tough one..I am one of those people (mother of 2 teens) who has had her head in the sand.

I'm avoiding the thought, I guess. I give you credit for bringing it up.

Mary P Jones (MPJ) said...

I break into hysterical tears at just the thought of having to go back to work and not being there for my son when he gets home from school, so um, obviously, I don't like to think of what would happen in even more extreme circumstances.

But I do have a brother that I've designated as guardian, and while it would be hard for everyone, I trust him to do the best for my children, if anything were to happen to me.