Tuesday, 30 November 2010



I was recently told by a manager of a residential home (not C’s) that because I have organised a Christmas lunch for the parents of C’s home that there must be a need in me to fix people. Other parents have too many issues and I shouldn’t take them on (I was only suggesting lunch!) That there is something missing in me and that I should walk away leaving C to ‘highly trained’ staff and get on with my life. ‘That’ he said would be the best thing I can do for C. Stop being a martyr. Apparently I have a build up of years of grief, guilt and denial. I have co dependency issues, control issues and am over protective (maybe some parents have good reason) I should accept that this is ‘it’ for C and not to want any more for him. Staff are not there to befriend ‘clients’ or parents. It is a job. It is not about family. If your son was normal and went to university you wouldn’t know what he was getting up to. Stop trying to save the world. Stop interfering.

All because I mentioned having an Xmas lunch for parents. I'm finding the difference in attitude and expectation of some staff from the world of education to the adult world is huge. There should be a transition plan for us parents!

How can you accept and support our adults if you don’t accept and welcome their family?
Things are changing and with the Internet and social networking these days parents are all in touch with each other – and with professionals. Some of us are professionals. We have access to the latest research. Some of us go on courses and attend conferences. We read books and papers. We write books and papers! Parents can be a good resource. We are the experts. Many of us know the rules, regulations and good practice guides, we rewrite them! Some parents sit on Boards and committees and change policies. We are political. We take part in consultations. We campaign. We run Charities. We got a mention in the Equality Act! Things are supposed to be transparent. We do want more. And as Kev said – we want it for everyone.

We want to work together in partnership.

So yes I do have a need to fix!

What out of date stereotype would you like to change?

I know not all staff think like this and there are many excellent people out there who work really hard with us parents and do want to update the system and the attitudes.


autismand said...

I can't believe someone had the nerve to say that to you! Think of all the times C's wellbeing has depended on your so-called 'interference'. For our young people, parental input is as necessary when they are adults as when they are children. Anyone who thinks differently has not understood the realities of the situation.

Kit Courteney said...

How absolutely bloody ridiculous!

How can anyone genuinely think that way?!

Hell's teeth, now that's a worry.

If it were not for people like you then the world would be a much more unpleasant place. It's not rocket science!

Carry on 'fixing' people for goodness sake!

Leslie: said...

You LOVE your son! Do they? Of course you want to be involved and you would be even if your son did go to university. I cannot believe the ignorance of a so-called professional staff to have the nerve to suggest you just leave him there to go on with your life. He is part of your life and I know he would miss you even if he can't show it. Keep up the good work!

Jean said...

What a horrible man!!!
He seems to think we should just lock the door and throw away the key.
Have your lunch and enjoy every minute of it!

wishihadakarmaanghia said...

Utter nonsense! It's people like you who genuinely understand what it's like to love and care for your son 24-7 for the rest of your life who are qualified to make changes. It terrifies me that my son's world could be dictated by people who think it's ok to act like a robot in their work and not care enough to realise that parental input is of vital importance. If so-called professionals listened to parents more then their jobs would be easier and they'd be way more effective!!
The man obviously has issues of his own - perhaps a distant mother who didn't care for him?
Keep doing what you do - you've made a difference to my life by writing your fantastic blog. xx

SeaThreePeeO said...

Whoever said that is clearly in the wrong profession if that is the way he feels. Utter twit.

jess said...

Asshat. Utter asshat. If only he were unique or easily dismissed with a shrug. But there are so many like him. So many who still believe that human beings are disposable. And the fact that they work with our children is simply an unbearable thought.

Carry on, lady. Head high.

Kim Wombles said...

That was really crappy of that person and scary to think of the position he holds. If our children could go off to university, they wouldn't need us to look out for them in the same way.

Keep fixing things! First up ought to be his attitude by going to his supervisor.

mommy~dearest said...


bullet said...

What an utter utter fuckwit. The bond between a parent and their offspring does not cease when the child reaches the age of 18, or 21, or whenever the magical number is supposed to be. A parent will encourage independance if possible, will hope for self-advocacy, but that does not mean that they will just decide that as their son or daughter is now an adult, they as the parent should just "walk away".

Anonymous said...

I'm actually quite gob-smacked that someone has been so rude as to say these things to you. What a truly disgusting person they are. They obviously have NO issues in their menial little lives and NO compassion. To expect a mother of ANY child, disabled or not, to just leave their adult offspring with an "expert" is the most ignorant attitude I've ever heard. It's a parent's job to worry, to nurture, to consider their child's future. And if that parent gives up, then what hope is there for the child/adult. Enjoy your lunch. I'm sure the others will, too.

CJ xx

Green Girl in Wisconsin said...

Wow--only because you were trying to support THEIR work on behalf of YOUR son? Talk about needing to get straightened out! You can't win with some people, can you?

Ron said...

Hello Casdok~

I'm completely speechless as to what that person said to you?!?!

OMG...I think that 'person' has issues!

No dear lady, you're not a martyr. You're someone who deeply cares, and has the strength and courage to strive for a better understanding. And then share your understanding with others.

I applaud you!

"Working together to promote change."

X to you and C!

Happy Elf Mom (Christine) said...

I'm really mad, reading this. I don't know what to say except that the staff only sees a client. He is your child and his condition is such that he NEEDS your protection.

YES, YES, YES in a "normal" adult, this would be codependency or worse. Good grief. That's not the situation here. Time and again there have been stories about abuse in care. I think you are an amazing woman to recognize that he needs outside care and to go ahead and place him. You are advocating for him to be treated AS AN ADULT insofar as he is able to handle things (ex. nightclub instead of Diddlyland). You take him on outings and want him to be a part of the community.

More than that, you are pushing for him to have more of a voice by exposing him to new learning opportunities. You accept him as he is while you also are hopeful that it is NOT TOO LATE for him to learn to speak or communicate if he is able.

I have so many words of admiration for you. When our children have needs it doesn't matter how old they are.

I'm just so sorry you are going through this. Hugs to you and I hope you find new friends and joy in your Christmas get-together. :)

Daniel "Captain" Kirk said...

It sounds like this person has a need to "fix" people. A need so great that he or she is not just organizing lunch for clients' families, he/she's diagnosing them. Talk about interfering!

I used to work in a place like that. 'Highly trained' my eye! I was paired with a co-worker with a year or two of experience for a week, then thrown in to sink or swim. The best employees had high school diplomas. The more specialized education and book learning our supervisors had, the less contact they had with the clients, and with reality. Since having a son with a disability, the most helpful people have almost never been 'professionals' but other parents.

Grace App said...

That's extraordinary ! Awful that someone has that attitude;
but I think it's good when you can confront someone enough to make them express their truth.
Otherwise we are just guessing why they behave the way they do.

I was trying to explain exactly this to a radio producer and my husband recently - but it was in the context of it being an "attitude from the past" - not something happening in 2010!!

Thanks for articulating it so well.

I might also add that there are some parents who welcome the chance to assuage their guilt and hand over all care to "highly trained staff" - telling themselves it is for the best.

But that's not you or me. We will continue to selfishly involve ourselves in our kids lives, regardless. Annoying aren't we?!?


Akelamalu said...

Sounds like he has been doing an online course to become a physoanalyst or something! :0

C is and always will be your son why should you abandom him totally to strangers??????

Chris H said...

Ummm... and what did you say to that right prick? I hope it was something good! Like... 'up you mate'!

Yuji said...

How outrageous. And sad that you have to go through all of this. Stay strong and true to what you know is right.

Lynn said...

Gee, I wonder where that need to "fix" things comes from? It couldn't have come from years of fighting for your son. People like him are going to have to hold onto their hats when these next few generations come along! We've all been fighting for years and have been schooled by moms like you who have blazed the trail!!

DOT said...

Wow! My uncle was born with Down's Syndrome and spent most of his life in an institution - but we are talking immediate post WWII when doctor knew best. (As it was he lived well beyond his life expectancy and taught himself to read despite the best efforts of his 'carers')

I know of a good Fight Club locally - might be useful.

Looking for Blue Sky said...

Yes I've had comments like this, even some members of my own family have wondered aloud why Smiley isn't already in residential 'so I can get on with my life'. I have seen some fabulous attitudes from people that work with my daughter, and some not so good - it's people who don't see the need to talk to her that worry me greatly, do they not see her as a person?

Cheri said...

If university staff had complete control over the student, you can bet parents would be there to make sure they were being treated appropriately. Group home isn't university. Group home is family, whether the staff wants to see it or not. If my daughter was in a marriage that was abusive, I'd be there to help her get out of it! I'd be ther to advocate for her. It is no different with a child in a group home. Staff are often abuseive, especially when they are told they are not family. Group homes do not want interference from parents because it means they HAVE to do a better job. You are like the mother-in-law to the group home! always there to make sure your child is being treated well, and being an active part of that child's life. I don't see how a parent of a child in a group home can just walk away and leave the rest of their child's life in the hands of strangers. I've seen residents who have no one, and they are always treated the worst because there is no one to be accountable to. I think lunch with parents is the BEST thing to do because then EVERYONE is watching out for bad care, which means there will be a lot less of it!

JoyMama said...

That manager is living in a different decade. (How old is he?) His "diagnosis" of your "issues" sounds like something straight out of the 1950s.

Disheartening to realize that there are still people like that in the field, who feel threatened when parents not only advocate for their children but also meet up with one another! But also encouraging to think about how very far we've come, even if we've a ways farther to go...

dluvscoke said...

Whoa. I'd be more than pissed if someone told me that the staff at my son's day program couldn't be "friends" with Cody. Yes, he is a client, but he is an person first. I think the staff that are best at their jobs ARE the people who have hearts and work with compassion.

I'm sorry you had to go through this. Don't let arrogant, self-righteous people bring you down. We parents must stick together.

Anonymous said...

Keep doing exactly what you're doing! :) Love, advocate, organize, mobilize and have high expectations. I suspect that even the cranky person who made those comments deep down would secretly appreciate your optimism and all the ways you "help" and "fix" things so the people around you benefit. My humble opinion from across the globe is stay the course!

Deborah Carr (Debs) said...

Blimey! It makes you wonder what they'd say if you suggested something like an outing, or maybe a slight change in the decor of the place.

Nancie said...

Hi Casdok, it is sad that sometimes others misunderstand us and said things that really hurt. This is the cruel reality of the modern world we are living in. But try not to let this discourage you. We know you love your son and you sincerely desires the best for him. You also have compassion on other parents and children who struggle in like manner, just like the way I feel for others who suffer from bipolar and depression like they way I do. You are doing a great work and keep up the good work. Don't let what others say affect you too much. I know it can be difficult but you can do it. I keep you in prayers!

Btw, thanks for stopping by my blog. It's so good to hear from you. I have been unwell and am not blogging regularly. Hope to be back more regular soon, dv. Take care and hang in there.

Warm regards,

secret agent woman said...

You go! Way to take an insult and turn it on its ass.

Tanya @ TeenAutism said...

Unbelievable - who does he think he is to say that to you?! Little does he realize how inspiring you truly are.

Rachel Cohen-Rottenberg said...

There is something painfully ableist in the idea that a parent should walk away from a disabled child and "get on with his/her life." Does this man feel that C has been a burden to you that you want to be relieved of? How utterly horrifying. I sense a "refrigerator mother" in the poor man's past.

What you feel is what any parent feels. You are C's mom and will always be part of his life. My daughter is going away to college in the next year, and I'm certainly not going to just go on with things as though she doesn't exist! What parent would? She will always be a part of my life, no matter how far away she might be.

When my stepdaughter was in college, her dad and I went to all of her lacrosse games. It was called Being Supportive. What you're doing is no different. You are being supportive to your son in a way that fits the context to a T.

Keep on going!

kathleen said...

What everyone else said :) Just a question though...Did you kick him?

Joeymom said...

*hugs* And thanks you for organizing lunch. So many parents need to connect, to have us all be extended family. To know they are not alone. It's huge. And it's just lunch.

Michelle Morgan-Coole said...

I think many professionals of the old school feel threatened by today's parents. Remember how our parents' generation use to look up to doctors, put them on a pedestal, take their word as golden without question?

Where do we get off always questioning, searching, researching, sticking our noses repeatedly into what they know is best for children like ours?

The times, they're not a'changing, they have changed for many, many parents. Those professionals who feel challenged by it will just have to work harder to keep up. Perhaps it will be a good reminder to them of the fact that we all are challenged in some way or another. Although I doubt they will be astute enough to pick up on that...

Maddy said...

Yes that's quite a diatribe in response to organizing lunch!

I can't think of anything specific that I'd like to change mainly because I find that because all are children are constantly growing and changing it can be a challenge just to keep up with the tidal waves of new emotions and developments. Perhaps I need surfing lessons.

Julie L. said...

Egads. The things people say. :( I think it's wonderful you organized that lunch. That's not trying to fix anything (not that there isn't anything wrong with fixing something if it needs fixin.) You're just being a leader and an organizer. People have holiday lunches all the time. Why not for one for parents/families of individuals who live in the same home?

Also, the manager is wrong on more than one count. People DO hover over their "typical" students at university...at least they do in the U.S. Apparently the word "helicopter parent" isn't in that person's vocab. It's a common term nowadays when it comes to higher education. Actually it applies to all levels of education here nowadays.

Suze said...

I think its a great idea to go out to a Christmas dinner. People generally go out to Christmas if they have a common theme, whether it be friendship through children, or work, or just friendship there is always commonality so why are you trying to fix people surely you are just being completely normal. I am totally confused. I have been invited out to the Christmas dinner at work all because I am a student and I work there whats the difference. I can't understand people's problems. You all understand each other which is a bonus and you all have to go out and enjoy yourselves surely. People eh!!!! Hope you are going out I think its a great idea I really do.

Warty Mammal said...

"... That there is something missing in me and that I should walk away leaving C to ‘highly trained’ staff and get on with my life."

How old is this fellow? That's the sort of advice the parents in this story received back in the 1950s. Walk away and don't look back.


Unfortunately, I've heard all too many horror stories regarding people just "walking away." That's assuming one was even inclined in that direction, which runs counter to the bond between parent and child.

I guess I'd be inclined to turn his statement around. Why is he, personally, so eager for you to leave your son to "highly trained staff"? Is he perhaps projecting something on you?

I would think that organizing a Christmas lunch is a kind and wise gesture. There's security in the parents knowing each other, and it's probably a comfort to parents to know others in similar circumstances.

Anonymous said...

It's a horrible thing for them to say to you! You must have felt really hurt and angry. I don't see anything wrong in being caring and wanting to help people.

Unknown said...

How can you just walk away? OK they are grown, have a good life, my job is done. I didn't do that with my other children why would I do it with a special needs child! Wouldn't they need us involved even more so!!!

David N. Andrews M. Ed., C. P. S. E. said...

bullet's already said what this guy is. And I have no doubt that nobody disagrees with that 'diagnosis'. I'm going to go through it and show what is wrong with what he said.

"I was recently told by a manager of a residential home (not C’s) that because I have organised a Christmas lunch for the parents of C’s home that there must be a need in me to fix people."

I'd wonder why he's saying this. What is his basis for saying it? Does he do this with everybody? Is he a clinical psychologist? Because even a clinical psychologist - who could well be just as judgmental - would know not to say such a thing.

"Other parents have too many issues and I shouldn’t take them on (I was only suggesting lunch!)."

The guy seems to have a logical thinking problem, doesn't he? From a client's mother comes a suggestion of organising a lunch for parents of clients; and then he's seeing you as this Mother Theresa person, ready to take on everybody's woes? Would be great to see how the 'logic' in that one goes!

"That there is something missing in me and that I should walk away leaving C to ‘highly trained’ staff and get on with my life."

How would he know there would be something 'missing'? And what sort of parent is he expecting you to be? It says more about him than it does about you, this suggestion.

"‘That’ he said would be the best thing I can do for C. Stop being a martyr."

Ahhhh - there's his 'diagnosis'! And this man is 'highly-trained'? What in? Being an arse?

"Apparently I have a build up of years of grief, guilt and denial. I have co dependency issues, control issues and am over protective (maybe some parents have good reason). I should accept that this is ‘it’ for C and not to want any more for him."

I would expect this from some of the idiots I've been forced to encounter in Finland, not someone in a country that is supposedly ... well, more 'grown-up'.

"Staff are not there to befriend ‘clients’ or parents. It is a job. It is not about family."

Actually... based on my training, I can say that - whilst befriending is not specifically mentioned in the training course I went on - one of the needs of parents whose children are in places like the one C's in is to be able to trust the staff, and taking the attitude that this work is 'just a job' and that it 'isn't about family' wouldn't engender my trust. That I can tell you.

What a twunt!

Gina @ Special Happens said...

I'm horrified that not only did this person *think* this, but said it...out loud...to a parent.

Rose said...

Makes you wonder what goes on behind closed doors. What are they trying to hide?
Why do people go into jobs like these if they do not want to make lives better for people with learning disabilities, what does it say about the staff?
Control issues? Guilt?

Paulene Angela said...

With such comments it makes me want to ask a thousand questions.

Primitive person.

Anonymous said...

I find these parents who use terms like "overprotective" or "helicopter parents", really are saying this:

"Please stop being such a good parent, because you are making us look bad by comparison. That you organized this whole holiday, makes us have to face that we're not doing nearly enough for our kids, and that makes us feel bad.

So, we're all going to shame you, for being such a good parent because then we don't have to get off our collective behinds and start actually parenting."

There's nothing missing in you, there's a lot missing in that manager. Perhaps they are intimidated by parent who is actively involved with parenting their child, and might see having C over as a liability should anything bad happen.

I don't know what their issue is, but they are messed up if they're saying something is missing in a parent actually there for their child.

With the media celebrating parents who do a half-arsed job of raising their kids, or manage to give birth to so many kids that none of them have any chance of getting enough attention they need. Maybe this is why people say something is missing, in parents who are not selfish, self-absorbed, and crying on mommy blogs about how they don't get to go out and have lattes at Starbucks with their girlfriends anymore.

I think you should inform the manager, that this may be the first time he's come across a real parent, a parent involved with their child. That due to the shock of coming across a parent that cares about their child, more than themselves, they might have lost their ability to think for a moment and realize that the people who have something missing are the parents who drag their kids on TLC, or the parents who focus on how they're pariahs endlessly treated harshly by a society that just doesn't understand how to be a parent.

In fact he should search some parent blogs on the net sometime, if he wants to see true martyr parents. They're not the ones planning Christmas lunch for their children. They're the ones endlessly bemoaning how unfair it is they got glared at because they felt their lunch was more important than tending to their crying child. How nobody understands how much they suffer, while their child is either left out of the picture, or framed as the new baby Jesus with them as Mother Mary and how nobody understands that they both suffer in a world that doesn't respect parents, despite almost 24/7 media commentary on how parenting is the hardest job in the whole world.

That's a martyr parent, a parent who sits and whines, resolves conflicts with doe eyes and "I'm about to cry!" faces. Parents who consider any reasonable request from a childfree person, as a personal attack on them or their child, with such paranoia they might as well be wearing a tinfoil hat to block out the mean thoughts of non-parents.

This manager must really have had an easy road, if the worst he's come across is a parent wanting to be involved. If anything, he should get himself checked out, if he thinks that it's normal to want to dump your Autistic child like a sack of potatoes off at a residential home, and go on about your merry martyr mommy way.

(rant over)

Anonymous said...

Wait-- did he actually say "if your son was normal?"
Doesn't he know that "normal" is no longer a permissible word in the Orwellian world of Special Parenting Newspeak?

Anonymous said...

And dont forget - C pays thier wages!

frogpondsrock said...

Do these people think that as a parent our love suddenly switches off? That because C is over 6 foot tall and over a certain age that you can just walk away, "Saying my job here is done?"

Oh FFS some people just give me the shits. How hurtful that must have been for you Casdok.


D.J.Kirkby said...

Wow...I'm sensing that that manager had some issues of his own! Plus why doesn't he think C is normal? He's quite normal in the wrold of autism.

Ellee Seymour said...

Best wishes to you and C for a happy and healthy new year.

MyTruth said...

This illustrates the problem of medicalizing all of everything!

But I've certainly learned over the years that there are many, many [pick the term of your choice: you all use some creative ones!] out there, and so I just continue on- unless I need to vent, then I plow into the (insert term of choice) and feel better.

The agency that runs -rather, is responsible for, my son's residence ultimately set up a quality review committee - better known as the "shut vicki up" committee. And the parent interaction has been formalized (just try telling an agency that they are somewhat less than transparent - hiding from public scrutiny - and they'll roll over in a heartbeat.