Monday, 13 October 2008

When labels don’t help

Every week C‘s home send me a photo.
This one sent a few weeks ago - Cs finger speaks volumes! (even though it was inadvertent)
I haven’t written much about Cs new home as things have not been going to well. I expected settling in problems, but not the ones that C ended up facing.
The home I spent 2 years searching for, the home I felt had the right attitude and would be right for C has totally let both C and I down. I have been gutted. C's last 2 visits home I haven’t wanted to take him back. (Note to self. The Managers of these places do a good PR job but its the hands on staff who do the actual caring, and can be a different story)

As C does not speak or sign all I have had to go on his appearance and body language (which I am very good at). And what the staff tell me - which hasn’t been much.

I was very concerned about what I was seeing. I thought the staff were trying to get away with as little as possible. Neglecting him and not taking care of his basic needs and welfare. But in reality what I found was that staff were taking the line of least resistance/avoidance as they were frightened of him. (Shrek lives up to his name!) Not a good start. (Note to self - trained staff does not necessarily mean confidant staff. )

The labels that preceded C to the home have not helped. Low functioning. Challenging and self injurious behaviour. And of course they would have read all his reports and spoken to staff from his school who would have told them some horror stories.
So they were seeing his labels and not C as a person first. Putting mountains in the way that need not have been there.

But after making some ‘big’ complaints and much talking with the home with the help of my Case Manager I think we have sufficiently kicked them up the back side and things have thankfully started to improve for C.

Many thoughts have been going round my head through all this (especially at night) if this was the best home i found -what must the others be like. And my concerns about what will happen when i am no longer around to keep on top of things have quadrupled. So i need to work harder on encouraging and supporting them (!!) instead of being upset with them. (Note to self. Research back up plan if it doesn't improve enough and i feel i need to take him out)

And I was also shocked and find it hard to believe to be told that I am 'rare' as a parent. That not all the people in C's home (and other homes) have concerned parents who take an interest and want to be involved for a variety of reasons. I find this very sad. But it is also no excuse for them to do their best. (Note to self. Offer to adopt one of the other residents who has no one looking out for them)

I came home to a parcel yesterday a ‘framed’ photo of C in the homes sensory room, laying on a vibrating mat, listening to music and watching a bubble tube, looking happy and relaxed. I took this as an apology from the home and trying to show me that C is ok.
Its going to take a lot more than that to regain any trust. But at least I feel they have got to message, and i appreciate the sentiment.

Actions speak louder than words and they are at last making the right actions.
Time will tell.
I hope my next post will be more cheery!

161 comments:

kaylee said...

I am sorry :(

Faith said...

I am not surprised that they say you are a rare parent. I can see that many parents having put their child in the home would breathe a sigh of relief and just get on with their lives without worrying. I'm so sorry that the home hasnt met your expectations, but now it has been reinforced that you are an extremely caring parent who expects certain standards to be met, I'm sure things will improve. It is still early days. The sensory room Where C was when photo taken sounds lovely, no wonder he looked relaxed. Best wishes.

Cait O'Connor said...

Once again I am totally bowled over by you Casdok. You are more than a champion for autism, more than a mover and shaker, you are the saint. I wish you well with your single-handed (?) efforts to improve this particular home but have no doubt in your ability to move those mountains.

lampworkbeader said...

I am so sorry to hear of your (and C's) difficulties, but I am sure that once the carers realise how much you are on the case, and they get tp know C, that things will change for the better.
Best of luck and kind thoughts Lampie

Trixie said...

Oh cas, that's horrid for you. But with your help, as you said, I'm hoping all will be fine. He does look very happy in that last photo.

Elizabethd said...

You have obviously brought them up sharpish, and it sounds like they needed to be reminded that there are parents who care, and who need to see that their child is being well looked after. As you say, the line of least resistance....
hope it all changes for the better from now on.

Crystal Jigsaw said...

I echo Faith's comments about parents heaving a sigh of relief once their children have gone into care. It is not always done in the best interests of the child but in the interests of the parents and other siblings. This I find quite extraordinary. There are ways and means to make family life work should a special needs home be inappropriate.

C has the most wonderful parent who will never neglect him in any way and I am sure he realises that. Your power as his advocate might well have given the staff a kick up the arse but it also shows that you are not prepared to settle for anything, just for an easier life.

Love to you and C.
CJ xx

Amanda said...

It's awful that they're being like this.

But also very, very standard in that profession. :-(

I wish I could tell you, like some others have, that once they see ho committed you are, they'll do better.

But I can't.

(Gah, what I just said, as well as what you write about, reminds me of the lyrics, "I would shelter you/Keep you in light/But I can only teach you/Night vision".)

Anyway... I think that one thing you might need to do, regardless of where he lives, is somehow try to find someone you can trust, and that he likes. And start teaching that person about your son as much as possible.

Teaching staff is good and necessary, but in the long run you'll need someone else. As Dave Hingsburger put it, with this profession, "the turnover is... Thursday." I can't easily count the number of staff and even case managers who have been taught (by a combination of me and others, since I can't do it alone at all) about my life, and then quit their jobs, got fired, got promoted, disappeared (one of them quitting his job and taking my file with him -- just before an audit at that!), whatever.

I know you probably know this more than anyone... but you need to find someone who's going to be stably there. Not someone who's paid to be there and who will move on. But someone who will be there no matter what. Maybe more than one person, in fact.

That's what I have had to find for myself. And it is not easy or simple. But it's necessary.

I have a lot more standard communication skills than your son, but it doesn't mean I can say everything I know, when I need to say it. I can tell someone a few things right now. But when I was in the hospital last year it took someone else who knew me very well, knew my every reaction in fact, to tell the nurse, "She's not just delirious, she's having seizures -- do something now!" And got me medication in my IV to stop them. I was in no state to do that, and I needed the help. Even in less extreme situations, this is a problem due to trouble with word-finding, voluntary recall, etc., as well as the fact that based on my appearance I often need an advocate just sitting near me to make people listen.

And that's me. I need all these people around who know these things about me, despite my communication skills, and I need them to be people from outside the system, who will be there whether they are paid or not. So does your son. I'm sure you know this, but I wanted to reiterate it. I hope you are able to find some people to get to know him outside of the system, and to begin helping you and him with the work of advocacy.

I hate that you're going through this, and I hate having to tell you all this, but it's what I've seen in the system, and it has to be dealt with even though it's awful. :-(

Casdok said...

Thank you Amanda.

Kit Courteney said...

That is a fantastic picture!

:0)

Attila The Mom said...

I'm so sorry you guys have been having troubles.

I have to say though, that last picture is lovely!

Kelley said...

Oh Babe. I read this post so many times. Trying to focus on the happy picture.

I wish I could come and hold you.

I wrote a long comment but deleted it, you don't need my babbling.

Just know that I think of you and C often.

Mrs. C said...

Love Amanda's comment. Finding a person to trust is the hard part. :[

I also hate to think of what the "bad" places are like.

Osh said...

Love the pictures, but hate the feeling of sadness I have in my heart for all the children that don't have a mother like you.

Norah said...

I was afraid it might be like that. I hope C will be ok there.

Bettina said...

I hope things keep improving.

NEO-CONDUIT said...

A great piece you have written! I wish I had somewhere my son could go. I was let down once again by a government department who was supposed to help my son out before I was hospitalised for major surgery recently. So he had to stay at home. He is nearly 17 and capable. My son is a bright young man. Yet he is violent, destructive, hurts his siblings, and now the animals. He is abusive,violent, lies, steals and commits crime. He has A.D.D, and Oppositional Defiant Disorder. A life time of intervention hasn't helped. My other two kids are great, and function well. Last year my son kicked me in the back after surgery. So I wasn't looking forward to what may happen's this time.Instead I came home to a trashed house and nearly half dead animals. The Social workers, and counsellors have all said kick him out. After three years of intense abuse I have done just that. His condition doesn't warrant state help. My other kids were being emotionally and physically damaged by my eldest son. The authorities wont step in until my son hits rock bottom.Even mental health services turned their backs, as they only took on kids who they thought may make it(for statistical purposes)! Meaning he hurts someone seriously,or dies through his actions. A bottom of the cliff/ambulance scenario. I love my son, but no longer knows who he is, nor do I like it. Hang in their, your doing a great job. I, like other parents have been forced to give up in a sense, through years of exhaustion/abuse and closed doors.

Rosie said...

There are places where the professionals care deeply... I know because I work in one as a music teacher... I am only there for two hours a week, but I have the opportunity to see the teenagers with their daily carers and educators and I am impressed and often moved by the relationships that they have with each other. Perhaps this is rare, or so it would seem by your experiences...and I don't know what things are like in sheltered homes for adults.
Your boy is so lucky to have a parent like you to fight his corner, and to have room in your heart to think of others....

Seamus said...

I'm sad to hear that the home was performing so poorly on Cs behalf. Hopefully your words did get through though.

starrlife said...

It's good to hear from you but sad that this is the experience you're having! Your son is Incredibly lucky to have you. When we made up our will our attorney suggested writing up a letter describing exactly how we wanted our daughter raised, values, expectations, lifestyle. You could probably write a book, become a famous author and then get lots of recognition and money?! Think of how long it took you to get to know what your son needs and then see if the house is at all interested in learning. I hope from what you said that they are. Hugs and patience. It's not so different from a son who leaves home to live by themselves perhaps in that they never live as well as they do with mom, ie, clean their rooms, stay up all night, eat poorly- just a special needs version!?

Betsy said...

Prayers for all involved that things get drastically better...and soon! xxoo

Bonnie said...

I hope things do get better for C, I can't even imagine what you are going through. You and C will be in my thoughts. Nothing can prepare you for this sort of thing huh?

Irene said...

It must be hard to never be able to relax where C is concerned. You always have to be vigilant that he is properly cared for. You are like a mother lion watching out for her cub. Do you ever take a big breath and just relax and let is all fall off your shoulders for a while? It must be so hard to carry the responsibility with you all the time. I have the utmost respect for you for being so vigilant and so caring when you just as easily could walk away from it. Well, I know you can't. But you could.

kristi said...

I think of you and C all the time and I was wondering how he is. It is too bad that people see how are kids are described (on paper) and then make judgments. I have gone through this with TC.

Stay on them! Make sure your baby is cared for..you are a great Mom.

CrazyCath said...

You know, I sort of thought it was not going to plan because of the intermittent "reports" and hoped I was reading it wrong. I also know from running homes for the elderly how hard it is to get good staff and train them. To trust them. I could not be there 24 hours a day but often needed to be for the results I wanted.

I so hope they pull it together and look past the labels. C is a human being first, thinking, feeling, needing....

It will be so hard to be positive after this more than shaky start. I take my hat off to you. I just hope they reciprocate and realise they need to work WITH you. It will make their jobs, and C's life, so much easier and happier.

Note to you - do not, I repeat DO NOT adopt anyone. You can't fix the world's issues. Concentrate on you and C. You cannot do anymore. Besides, who would you choose? Which one? Just don't choose - and that way you are a visitor to them all. But mostly for C. Does that make sense? I hope so. (((Hugs)))

SB said...

sending you a hug from across the pond and hoping that things improve.

StaticMom said...

This makes me sad. I think my biggest fear as a parent is that my children will be mistreated. My daughter, while *labeled* "high-functioning", often lacks the capacity to explain when her emotional states and the things (or people) that provoke them. My son has been primarily non-verbal until recently, and even now he lacks sufficient language and sign vocabulary to tell me if someone were mistreating him. This terrifies me, so I can very much understand where you're coming from and I would be equally upset at the possibility that C's home isn't living up to its promises.

I have no doubt that some staff in homes like this are on major power trips, but I'd like to hope that most mean no harm. I suspect many people are confused about caring for others when they don't readily or completely understand the challenges they are facing.

And this is why awareness is so important to me.

I'm thinking good thoughts for C, and I hope your worried mind can find some peace about this as well. I love the last photo, he really does look happy. Here's to hoping he spends much more time feeling that way.

E said...

Oh Casdok, it's so good to hear from you even though your way is hard again right now. You are your kid's advocate. It doesn't stop. The home might in fact be a good one, but the transition is hard for them and for C. Most people struggle with change. That includes the home staff. It isn't right and it isn't fair, but it is what it is. You have to manage them too. People generally try to do the right thing when they know what it is. You are helping them find out the right things to do. And eventually you will have helped them create routines for C that will be easily transferrable to new staff in spite of the turnover.

Here's a wild thought...is this place a non profit? If it is try to make connections with Board members so that you get invited to be a trustee. This will give you better access and more clout. Drop hints that you are interested in development, fundraising, and ask to meet with members of the Board to discuss it. Talk about fund raising and you will get invited on...I promise. All Boards loathe their fundraising roles and are always looking for help.
If it is a non profit let's talk. I can help you with this....meanwhile namaste dear Casdok, namaste

VAB said...

That's very upsetting news. Let's hope that, being forced to engage by your prodding, the staff will discover C as a person.

E said...

Look at www.isabelpratt.com
If you want help I will give it gladly

Pweshes Mama said...

Hi Casdok, you are truly such a strong woman and I really admire you so and am I'm sure along with so many ppl,we are so inspired with what you do.. I love how in this post you still found the positive in what seems like such a negative situation and you still ended it without sounding completely jaded like what most other parents would do. You are setting a really good example for other autism parents out there. I salute you and wishing C and you all the best and hope things will get better after this :D Take care

traci said...

Sorry to hear of your concerns. This is somthing that gives me nightmare - how is my daughter going to be treated when i'm not there?
Also it was only last week at the children's centre that she was having a bad day and tried biting myself and the 'new' speech therapist out of frustration. The look on the therapists face said it all - she was scared of her and she's only 3!
You are handling this really well and your my inspiration
Take care (hugs)xx

Tanya Brown said...

The portrait of C shooting the rod is classic!

You are doing well by C. It may not feel like it at the moment, when after all of your research and hard work, the situation isn't living up to its promise. Still, I think your instincts are good and you're doing exactly the right things. Your interest may even be good for staff morale, bizarre as that sounds. Imagine dealing with the run-of-the-mill parents who have effectively warehoused their children, versus a parent who is interested and appreciates it when they do a good job. (Actually, this is difficult for me to imagine, because I'd simply like to smack them upside the head. But I thought I'd toss the idea in.)

Amanda's comments seem very on point. E's idea of becoming a trustee also is promising.

I'm thinking of how responsible parents I've known handled the death question, which although hopefully not imminent will be a concern at some point. One banded together with other parents and started his own home, an expensive endeavor to be sure. Still, are there parental action groups in existence, people with similar values who can eventually advocate for your son?

Wishing you and C all the best, and here's a big hug for both of you: (((( ))))

mommy~dearest said...

Oh, I do hope things start to turn around! Sadly, I am all too aware of situations like this, as I work at a rehabilitation center for brain injuries. I've worked in direct care for a long time, and we have several staff that are afraid of clients because of their behaviors.

It is heartbreaking because you're right, just because someone is trained, does not mean they will be able to handle the job. Also, in the States, direct care workers tend to be uneducated or very young and inexperienced. I hope I'm not offending anyone in the field, but this has been my experience.

Here's to hoping things are getting better- he really looks happy in the last pic!

~X~

Bobbi said...

Wow, I honestly don't know what to day.

First off I'll say that I love the comparison with both the pictures and I think it's hilarious that they sent you the first one.

Secondly, what a hard thing you must be going through. You are such a brave, smart, caring person. You have what it takes to whip them into shape and to take better care of C. It really worries me, like you said, that this was the one that took you 2 years to find and what might the other ones be like. I hope they continue to do better with C. It must be really scary for you. I will keep you guys in my prayers. C is lucky to have such an advocate by his side, there is nothing more powerful than a mother!

P.s.-I just love the picture of him smiling.

Lucy said...

I used to work for a day program for low functioning mentally handicapped adults. Most of our clients came out of homes to spend the day with us trying to meet their objectives. The client/staff ratio was 3 to 1. We had quit a large staff for our better then 30 clients. Many of the clients needed to be fed their meals and even more needed to be changed every couple of hours. All of the staff was required to be CPR and first aid certified. Some had to be licensed to drive the bus and others had to be med certified. That's it! That is all it takes to qualify to take care of your son. But that is still a lot of requirements for people being paid minimum wage and not getting raises because of budget cuts and wage freezes. You don't work this kind of job for the money because there just isn't much. That is, unless this kind of work is all some people can find. Do you really want someone that took this job as a last resort taking care of someone you love? I wouldn't if it were my daughter.

My point is that until the government stops cutting budgets, freezing grants and starts subsidizing facilities and homes with enough money to pay trained care givers and staff more then what McDonalds pays their employees, you are going to have untrained people working for your son that are there only for the paycheck.

This line of work needs to be specialized. Staff in these homes should be as well trained in this area of care giving as nurses and special education teachers, and they need to be paid accordingly. C and all of the other people with disabilities deserve to have trained people looking after their needs. People who are educated in these kinds of disabilities. Not people trained just in CPR, first aid, bus driving and how to give meds. We need people that know about seizures, stimming, violent and other unsocial behaviors and how to deal with them. Of course C's staff is afraid of him, because they don't know how to deal with his frustration and anger at their frustration and lack of knowledge about his needs. C doesn't need a babysitter. He and you need educated people and the government needs to step in and make sure that he and others have that.

I am very sorry to hear that his new home is not working out as you hoped. I had hopes for you, but I worried about him too. The turnover for these kinds of homes is high. I am afraid that until they can afford to pay higher wages for better trained care givers, your job of teaching them will never be done. Please keep a close eye on them. Drop in un-announced now and then. Keep up with his charts. I know you will stay on top of it until you are completely comfortable with the staff and your son's care. You really are one of the good parents that actually care. It is more rare then you know.

Cheri said...

Your best bet is to stick with this home and teach them how to respond to and take care of C. Turn over in staff may be high, but once a general routine gets established for C, he will feel more comfortable. As new staff comes in they will be taught how to take care of him by people who are experienced. Eventually the old labels will be forgotten, and C will just be C.

I worked in a group home this summer, and the staff typically want to to what is best for the client. The guys who had regular visits from family were happier, and staff seemed to keep on their toes because of those visits. When they know they will be held accountable by momma bear, they tend to be more congnizant of their own behavior.

I don't know how it is in England, but here in Idaho the state regulates homes. The homes are expected to create and follow treatment plans with the goal of helping the client become as independent as they are capeable of being. You are a mover and a shaker - maybe you can help blaze that trail too!

JoyMama said...

Several thoughts.

a) Big hugs to you.
b) What amazing fingers C. has!
c) I need to print out that cartoon.
d) Thank you for posting the smiling photo too.
e) More big hugs!

Tanya @ Teenautism said...

So sorry to hear of the difficulties you're facing with C's new home. But I love how you're planning to encourage and support them rather than being upset with them (even though you are certainly entitled to that). I learn something from you with each post you write. You are such an inspiration!

Mary P Jones (MPJ) said...

Oh, Casdok! Yuck! So much does depend on the people who are right there day to day, and that can vary so much and be so hard to assess. I know we were very excited about the school my son is attending, only to have two horrific years with lots of teacher turnover. This year is looking up for us though, and I hope things will be improving for you and C soon too.

Delilah said...

I am so sorry to hear that C's home is not what they claimed it would be. C is blessed to have you fighting for him every step of the way.

Ken said...

You are the right woman to be his mother, I am proud of you and hope you do pick up anther child.

Akelamalu said...

I just cannot imagine how worrying it must all be for you wondering what is happening to your son on a daily basis. My grandchildren never reached the age where they could not be looked after at home - I'm not sure whether to be thankful or not, does that make sense? :(

My Autism Insights said...

I'm so sorry that things have been so hard. It's a hard position you're both in and so sad that they weren't living up to that trust. I hope things continue to improve. And I'm amazed at how giving you can still be, adopting someone who doesn't have anyone to care for them. There has got to be a special place in heaven for folks like you.

All the best!

Virtual Voyage said...

So sorry this has been a rough adjustment all round and can understand your concern, particularly with C's communication difficulties. Sounds like you have clarified a number of expectations, though.

Sass E-mum said...

I think it's desperately sad if you really are a rare parent. Though as I think about it - you are a rare and astonishing woman - being both determined and compassionate. By the way, I love the second photo of C - I hope you get more like that very soon.

Maddy said...

I certainly would take the photograph as an indication that someone 'gets it' and is trying hard / harder.

Can't say I'd disagree with a back up plan either though as it's like an insurance policy.

Best wishes

blogthatmama said...

I think sometimes people need somebody else to show them how to think differently and you've obviously done a brilliant job with the staff, it may be a long road but you sound like you're on your way and C looks happy in the last picture.

Kahless said...

The picture of C; he is beautiful.

Chris H said...

At least you ARE on top of the situation, and can make sure C is being cared for as you would wish. I hope you do 'adopt' another person!

LceeL said...

At least you are in there, pitching, as it were. (America expression - means you're fighting the good fight.) So many people are just warehoused - gotten out of sight and hidden away. It is a tragedy. Well done you. Truly well done.

The Dotterel said...

You're right, Cas - actions speak louder than words. Let's hope that an improvement in the care of C does the talking from now on.

Suburbia said...

I'm so sorry to hear that it hasn't been as you had hoped. It is also shocking that you are unusual in trying to get the best for your offspring. You will keep fighting for him and hopefully you will achieve your goal.

Patty O. said...

This has to be so incredibly difficult for you. You only have so much control over the situation and I am sure you are constantly worried and second-guessing yourself. The only thing I can compare it to (and this doesn't even come close) is my son's school situation. I am not sure what they are doing for him and there is little communication going on, so I need to go down and meet with the teacher, etc.

I really admire all you are doing for your son. I know for you it is second nature, but I also know that the staff at the home are right when they say not all parents are as involved as you. I sure hope they continue to improve. I also admire how you are trying to see this from the staff's point of view. Sometimes I get so defensive about my kids, I fail to see the other side of the picture. Good luck.

Marla said...

The differences in the two photos are striking. I am so sorry this home is not what you thought it would be. I imagine that is beyond devastating. It certainly does make you concerned for all the people that don't have parents advocating for them like you do for C. When I worked in children's group homes we rarely saw any parents. Most were "uninvolved". It was heartbreaking. It seems to be the same way in schools too. When I would be advocating for M a lot of the teachers and staff would say, "We just are not used to parents being as involved as you are. Most don't even come to the open house." I can not even imagine.

I am glad you let us know about C's current situation. I am going to be praying for further understanding and ongoing effort from the staff. The picture was a very nice gesture but they are mistaken if they think that will totally ease your concerns.

Adventure Mother said...

Just popped into your blog from blogthatmamma. I was saddened to read of your son's experience in his new home. I have visited many care homes, nursing homes etc. over the years in my professional capacity and agree that good PR and good standards do not always go hand in hand. By working together with the staff, hopefully you will create a happy home for him and you will be able to relax in the knowledge that he is happy. Good luck and best wishes to you both!

rhemashope said...

So sorry. I cannot imagine how hard it must be to worry and wonder about C. The picture they sent of C is a happy one, though, and I pray that things are truly changing for the better. I instantly recognized your kind heart when you said 'note to self: adopt a resident who has no one looking out for him.' Some good will surely come out of this situation.

Jessica said...

Keep up the good fight. You aren't just fighting for C, but for others who are living in that school. Continue to be the pro-active parent. It saddens me that those who chose the career of taking care of those in need are more willing to follow their fears rather then facing them head on. He's a man who deserves the same respect and care like anyother.
You are my hero.

natalie said...

This scares me a little. :(
You are such a wonderful and observant mother! And I love the last picture of C in the sensory room, priceless.

Natasha said...

Hi Casdok,

I think you've done a wonderful job with C. He looks adorable, and quite happy. Don't worry, All will be well. I'd like you to join and post on www.womenetcetera.com. You've been such an inspiration to me, and I'm sure you will be too to many mothers.
All the best,

Natasha

DJ Kirkby said...

Good for you and even better for C! That last pic of him is so beautiful and the first made me giggle even though it was an unintentional pose. You are such a lovely mom...xo

Honeysuckle said...

I'm so sorry the home's not living up to your hopes for C. It's hard enough to put them in someone else's care without having all these worries. But it sounds like you've sorted them out, at least to some extent, and they'll know now that you're being very vigilant about how they're treating C. Keep us posted on how things go on.
That last picture is a delight.
(What long fingers C has!)

frogpondsrock said...

Oh Casdok, My heart goes out to you and to C as well..

I hope that things do actually get better at the home and continue to improve for C...

Take care of yourself as well.

xxx Kim

bobbie said...

My heart aches for both of you. What a blow to find this situation after your long search for the right place.

I hope you are right in your assessment that they are now trying harder. It would seem so.

I recognize the Dave Walker cartoon. I've considered using it myself from time to time.

Isn't it sad that they consider you special for being a concerned parent? Hard to believe that anyone could NOT be concerned about their child's well being.
I also recognize your concern for the future. I've experienced that myself. What will happen when I'm gone? I do not have a special needs child. At least not one considered so by anyone but me. But the thought is there.

My thoughts and prayers are with you, Casdok.

BenefitScroungingScum said...

I'm so sad to hear about this. I was hoping things would be improving for C and you. I hope they do start to now, that certainly is a lovely and happy looking photo in the sensory room. Hugs BG x

Jerry Grasso said...

Certainly we aren't in that boat with Demetrius, but I am always worried about the what if for the boy in the future. I have an aunt with Parkinsons that is much in the same boat you guys are. No place is perfect, but what is the best option? Dunno if there will ever be an option equal to what Kim and I can offer Demetrius. Because even if a third party gives it their best - it just won't be with the love and passion we have here in the house for him. That's not an excuse, but just a sad reality, methinks.

buffalodick said...

Hope it gets better, but remember; No matter how much they care, it will never be as much as you do..

Okiemunchkinsmom said...

You just voiced my own fears for the future of my son. I'm glad that the kick in the rear was at least felt. I hope you don't have to keep kicking though.

Jenn @ Juggling Life said...

I have a friend whose son is 17 and she is beginning to consider a home. I'm not sure if this would scare her or help her to feel it is okay.

She is a parent like you--one who will fight for the best for her son. He looks very happy in that last picture.

Ron said...

Good Morning Dear Casdok~

Know that your tremendous efforts to altar the "awareness" of Autism, is bringing a "consciousness" to ALL those involved.

As ALWAYS...I share with you MUCH good energy and LOVE!

P.S. C looks AWESOME in that last photo! He just glows!

Hi C!
X

TOM FOOLERY said...

My thoughts are with you and C. TFX

deb said...

It's so hard trusting your child to the care of strangers. I struggle with this all the time as well and Katie is only five minutes away from me.

I hope they can come to see C. as a person, a unique human being with the same value as the rest of us. All of us are special, all of us need to be loved.

Phil Plasma said...

I too hope that things change sufficiently for C to be taken care of in a better manner, that your fears are lessened and that you have the opportunity to post from a happier place.

menopausaloldbag (MOB) said...

Oh I hope this situaton is just a matter of tweaking things so they get his care right. Hope springs eternal and keep cracking that whip so they know you have them in your sights. X

TEACH said...

Wow, I cannot even imagine what you are going through. It must have been so difficult for you to even make the decision to place him in a home. It sounds like you are a wonderful mother though and C is very lucky to have you supporting and taking care of his every need. I know a child that is autistic and is non-verbal. He also does not use sign language. I have seen first-hand how his parents can interpret what he wants, needs, or is feeling through his body language and appearance. That you can also do this should hopefully help you see the wonderful connection that you share with your child. I have just recently been researching more on autism. Through my research I have read the varying opinions on when and how to give a child with disabilities a label. I can see how the labels that C has been given in the past are not helping in any way for his current well-being. Talking to the staff from his school and reading their reports may not only bring about bad results. I understand that they may look at his label first instead of really getting to know him in person. It is sad that they could have formed an opinion about him before they even met him. Sometimes talking to past teachers and staff can prove to be very helpful for current teachers or staff. This way, they know how to provide the best services for the child. It is sad to think that you are “rare” as a parent just because you want to be involved in your child’s life. I think it is important that you continue to check-up on the condition of C’s home and believe me, the staff will take notice. I think that they will make it their mission to make sure C is receiving the best services. In terms of the pictures that you receive from them, I think the last one you received should reassure you that things will get better. Everyone always needs time to settle in to new surroundings and adjust to change and people with special needs are not any different, it may just take them a longer period of time to adjust. The sensory room sounds great and I especially like the idea of the vibrating mat. I’m sure this proves to be very helpful for many people. I love your comment about “Actions speaking louder than words”. Maybe by sending this last picture, this is the first step by C’s home in making changes in how they function.

Flea said...

The smile on his face is wonderful. I hope, for his sake and yours, that they really did get the message. I hope some empathetic individual takes him under his or her wing.

Have fun adopting another resident. :)

Goldie said...

I am not sure what to say. This makes me sad. I hope that thinsg get better soon. I am so apalled that the trained staff there don't seem very trained! But it looks like they are trying.

I have found with the care my grandmother receives that we really have to stay on top of them. She is in a first-rate facility (of her choosing), but even they have trouble finding first-rate care. Good help really is hard to find!
Hang in there, you are fighting a good fight!

kia (good enough mama) said...

Oh my gosh, how awful for you to have to doubt a decision that took you so long to make. And to feel like your son isn't getting the care he deserves. I'm so sorry you've been through this. I can only imagine how heart-wrenching this has been. Awful. I hope that they improve GREATLY or that you can find somewhere more deserving of having your son as a resident. I'll be thinking about you both...

Niksmom said...

Sending you love and warm thoughts and prayers for continuing improvement in C's living situation. I have no words of wisdon to offer...just love and prayers tonight. xo

CC said...

HUGS! this sounds so hard.

I worked with a family that ended up moving to a rural location so that they could actually build a group home for their son (and others). He's 18 now and I haven't heard from them in a while, but I hope it works out for them. I think they weren't happy with the adult group homes in our area and decided to take a go at it themselves. It's sad that things are that tough :(

Traceytreasure said...

The pictures were night and day. The framed one is precious. I hope that they will do a better job for you and "C"! (Note to Casdok, I believe you are a rare parent and you are awesome!)

Big hugs for you and C!!
:)

Stimey said...

I hope things get better too. C is very lucky to have you.

citizen of the world said...

I am so sorry things haven't been going well for C - how nerve-wracking for you. And good for you for confronting them - that second photo of C is just wonderful.

Elissa said...

Love and hugs from us all xx

laughingwolf said...

you are right, some training does not competence make... :(

glad to hear you got their attention, if only temporarily

nice pic of c happy... :)

Jorgo said...

Hey Casdok,
You have made a difference for your son and touched the lives of a lot of people.
What about your life?
How are you going with that?
You remember a blanced life?
Mental/Physical/Spiritual/Family/Financial/Social
Please, when you can, give some thought to you...
I really appreciate your thoughts and spirit,
Best wishes,
Hugh

Jade said...

Wow, sounds like we are all going through some challenges right now eh? I know all too well how hard you have to fight to make sure your child is getting everything they need and treated appropriately. The parents of the children I work with often come to me in the hopes that I might be able to advocate for them a school adjustment or other sorts of "tweaks" in the systems they have to balance.

You are a rarity as far as parents go. I have worked with many that just do the basic minimum with no follow up. Its so frustrating to see those types of parents but I also understand that many of them become emotionally and financially tapped out and slowly shut off.

It makes me smile to know that C has someone on his side that is not going to stop fighting for him and what he deserves. You're doing a awesome job. I doubt you're told that enough, in my opinion you deserve to hear it once a hour!

Faith said...

Wow what a lot of comments. Its Faith again Casdok, thanks for visiting my blog and just to say that the Black Box picked your blog for me to visit!

LarryG said...

you madam are simply amazing!

Working mum said...

I'm so sorry you've been having these problems. It is also sad for the other people in the home that you are a rare parent; who watches out for them?

Let's hope C has more happy and relaxed times from now on, like that lovely second photo.

WM x

FXSmom said...

oh man. every parents worst nightmare and fear. I'm so sorry.

I hear from teachers a lot that I'm rare as a parent for being interested in his education. I am also amazed. It takes so little time for all the love I have for him to ask questions, be involved, and take a stand for him.

I guess God just made us out of tougher stuff :)

~Zurama~ said...

I'm sorry this is happening. His body language thought was very descriptive, good for him, for letting you know without saying a word.

rainbowmummy said...

"So i need to work harder on encouraging and supporting them (!!) instead of being upset with them." Simply crazy. Parents shouldn't have to do this, it makes me so mad. I am orry that you are going through this right now and I hope that this gets sorted. I hope that c is happy where he is and that the staff get their fucking act together.

Bonnie said...

We are in a marathon, and you are running not only for C but many others as well. Keep on going, you are a wonderful person.

Helen + ilana = Hi said...

As the child of parents in a home for the aged with dementia, I have also been told that I (and my sister) are an anomoly. I feel for your situation............and never fear, you are a fabulous parent.
Blessings & Good Cheer
ilana

Holly Nappi Collins said...

HI:

You got so many comments so not sure if you will see mine, but thought I would leave a response anyway. I can relate to your situation completely—as you may know. My daughter is at residential school for the first time in her life and so far so good. But I know what it’s like to think about our kids in a residential school and a program during their life and needing to rely of others to care, teach and help—without being told to through a complaint. It’s very unnerving! I know if Meghan was unhappy then she would let me know in her own way, too.

Mama Deb said...

Thank you for your honesty in relaying your experiences with your son. You are a big help to those of us with younger kids on the spectrum.

The picture they sent you of C is really wonderful. Here's to hoping every day holds a smile like that one for him...and for you.

JUST A MOM said...

OH OOOHHHH I SO KNOW ABOUT PEOPLE BEING LEFT FOR OTHERS TO CARE FOR THEM... even if it is old ones it just breaks my heart... He DOES look happier,,, and Maybe just MAYBE they have a better grip on what or how to go about things for C now,, that what they do WILL make a differance,,,, I so know when there is family who care it does make MY JOB better,, hang in there

Kittymama said...

It's hard when fear (and a nasty reputation, like my son's) precedes a child's entry into school or a home. Fear colors people's expectations almost immediately, and many times, our kids don't get their fair shake. C is lucky to have you as his advocate. When people know we care, they, hopefully, will follow suit. I pray for you and C always. His smile is truly a gift!

Mama Zen said...

I love that last picture!

lime said...

oh my dear, i can only imagine your disappointment, anger, and great concern for c. i am just so sorry it has gone this way. kudos to you for working to make sure c is getting what he needs. i do so truly hope the staff all improve their efforts to an appropriate level. and how good of you to also want to "adopt" another resident who may need a caring advocate as well.

that photo is a precious one but i agree it's only a start.

alan said...

I have a friend who is an ICU nurse; he says his job is to be his patient's advocate, not a doctor's lackey. It's an attitude I had never heard before, or seen, in the time I've been around hospitals through the years. It has accounted for some patient's "making it" that wouldn't have had he not been there.

I can think of no one to be a better advocate for any child or person going through this than you!

Your compassion, your intelligence and your knowledge are invaluable. I had thought before this might well be a "calling" that was seeking you.

So very delighted to see that 2nd picture! It made my day!

alan

J said...

It's great to see all the support coming your way from the blogging community. : )I think it is indeed (at least partially) a matter of the home finding good help. It might also help to build a relationship with the direct care providers. E's idea of becoming a board member if the home is a non profit is a good one. You could probably help more people in the home that way than you could by just adopting one. Also, Writing a book and using the profits to build an ideal setting for C sounds ambitious, but it might just be a possible plan B or C or D. I could probably help you come up with an idea for plans E, F, or G but hopefully you won't need any more plans than the one you already have.

P.S. Am glad to see him looking happy in that picture.

Lane said...

I'm so sorry to hear C's care has not been as it should be. Whenever I see a new post from you in my list, I always hope to see that he's doing well, settled and happy.
I hope they take sit up and take notice now. I really do.
Take care.

Dave Coulter said...

I can't imagine what it has been like to experience such doubts and concerns. No person can fill the role of a caring parent but I hope that these positive developments continue. :)

Randy said...

Good on you for getting that facility moving in the right direction for C!

My children are fortunate to reside in a Catholic facility with a caring staff and an aggressive autism education center. It broke my heart that it got to that point, but it's been comforting to see my boys progress.

marie said...

Thank you for visiting my blog. I look forward to reading more about you and c.

Anne Brooke said...

So sorry to hear you've had so many problems with the home, Casdok - am hoping that things continue to improve for C and thinking of you both.

Hugs galore

Axxxxxxxxxxxxxx

Jim said...

Actions do speak louder than words however, what we don't see, things may be doing the way it should be doing. This is a critical time for any parents who sees their child going through such hardship.

In my heart, you are one great champion parent.

Debs said...

Actions certainly do speak louder than words, Casdok and looking at that happy photo of C, it looks like the staff have taken note of your concerns.

I certainly hope that they begin to improve. Hugs to C and to his wonderful mum x

Dianne said...

how sad that more people don't have a 'you' to look out for them

the photo of C is sweet and I hope speaks for better days to come

you both deserve them

Ann said...

I am so happy that you stopped by my blog today.
What a wonderful site you have here.
I've gone through the first page and want to tell you how important your message is. I've visited Faces of Autism as well.
I'm so happy that you visited me, so I, in turn could visit you.
I'll be back!
Ann Again...and again

marie said...

Hi, I think you are a very wonderful mother and advocate for your son a great deal. I know about being labeled. People tend to pass judgement upon you from the moment they see you. It is not fair. They see the disability first before they see you. I grew up with this. It was very hard for me in school and now where I experience it the most is in trying to get a job. People just do not want to give me a chance because they are afraid of me. I hope that things work out for you and c. He looks like such a lovely person. I will keep you both in my prayers.

Sarcasta-Mom said...

Whew, this is a tough post for me. I work in the office of a company that does assisted living for adults with developmental disabilities, and I have a son with Asperger's, so I'm seeing this from all sides.

I do have to say, there are companies out there with staff who truely cares, and administrators that make sure all clients are getting the best care possible. I'm lucky enough to work for such an agency.

On the other side, it's difficult. Good agencies are hard to find. Support staff is paid very little for what they do, and it's hard to find quality workers who are really passionate about the job. It's even harder to keep them. The government is constantly cutting funding, and agencies strugglke to provide care on less and less. It's also true that there are very few families that are involved with their loved one's care once they're placed in a care home.

I'm sorry you're having such a difficult time with C's placement. However, with a mother like you advocating for him, I know he will find a place where he is happy and well cared for. You will MAKE such a place happen because you care so much and you're not afraid to fight for it. Take care, and keep fighting!

Maggie May said...

Very worrying post. I do hope things will improve for you both. He is very vulnerable not being able to communicate properly, relying on your intuitive skills & perceptions as his mother.
You can only persist with the hunch you have & liaise with the staff.

Andrea said...

O My God, you are living my worst nightmare.
Big hugs.
Hope things work out for C soon.

Trish @ Another Piece of the Puzzle said...

Good for you for putting them on notice that you are expecting them to get to know C and to do a good job! Love the picture of him relaxing - may there be many more like it to come for this wonderful young man.

Michael Manning said...

Cadok: Your post warmed my heart with your obvious Love. My sincere thoughts and prayers for all to be well on your end are already flowing your way!

lonestar818 said...

(((hugs))) I'm so sorry to hear it's been a rough start, but glad that things are starting to look up. You're doing a great job, and I think you're right to try to work cooperatively with the staff rather than let it get adversarial.

It just breaks my heart to think of the people who don't have someone caring for them enough to be involved in how they're doing. That is so kind of you to want to help them as well.

Seen This Scene That said...

It's sad to hear this news. Hang in there, at least the staff are trying to improve.

earthlingorgeous said...

Yeah some are trained but not that confident. I hope everything turns out for the better in there for C.

david mcmahon said...

The second photograph made me smile, especially as a parent myself.

She said...

Weeping here. Sitting in the coffee house weeping reading your story. You are one amazing woman, and that boy of yours is ABSOLUTELY BEAUTIFUL!

I'm sorry it is so damn hard. I can't even imagine what it's like except through your wonderful rendering of your story. Thank you for sharing.

Praying for you both!

Michelle (The Beartwinsmom) said...

Parents who actually fight and care for our autistic children should be the rule, not the exception.

I'm so sorry the residence facility is giving you such a hard time. You keep giving them hell, Casdok. You and C should have nothing but the best.

Nea said...

You are an inspiration Casdok.

Thinking of you both.

~Zurama~ said...

It's so frustrating when they are not able to communicate. I know just how you feel and I'm sorry.

Angela said...

Hope all goes better there

C is very lucky to have you

Lehners in France said...

Hi I came from Post of the Day, it crass to congratulate you when your post is so real and heartbreaking.

It is very sad that other parents put their children into homes and then wipe their hands of them. You on the other hand are a credit to C, I truly hope that the care homes behaviour changes and they start to treat C as the very special human being he is. You sound like a very special Mum. Do think twice about adopting another resident though. Debs x

Fat, frumpy and fifty... said...

heartwarming...post over from Davids..congrats..


As a parent I cannot imagine doing any less for ones children....so its good to be reminded that some other children are not so advantaged. One expects staff to do their jobs, have a vocation, but like several recent posts this cannot be assumed to be the case..

x

Moannie said...

I would not dare to imagine that I could know how it feels to have a child with 'difficulties' having been thrice blessed.
I can only stand in awe and admiration.

How it must have come as a gift, to see C smiling in that second photo.
Here from David's POTD. Now I have found you you are on my list...Inspirational.

MMC said...

Hang in there, Casdock.
My gut tells me that if anyone can make that home a real home for C, that one would be you. ((((Hugs))))

Hilary said...

Wow, there are already lots of comments...

I love the pic of him flipping the bird even though it may be indicative of him not having a good time...

My daughter is six and labeled "PDD NOS". For the last two years we've been working with the Wisconsin Early Autism Project--they come into our home and work with her for 30 hours a week. While the work that they do is great I have often felt that I had to really be on top of them to make sure that they weren't making her feel like her way of thinking was wrong, or that her instincts are wrong... I thought this was pretty standard, along with going to all the team meetings the therapists had, but the amount of times they have praised me for my involvement is sort of unsettling--like there is an alternative?

Wow...I didn't mean to ramble. Anyway... I am here via David's Post of the Day.

Sandi McBride said...

Perhaps the new Home must grow as much as C must grow...our expectations always seem larger than our actualities, but I sense they are at least trying...God bless both you and C...and the Home he has landed in till his wings are stronger.
Sandi
ps
here by way of David

lmerie said...

Great Post - great POTD!

Punkys Dilemma said...

It's always such a fight for our children. You're doing a great job!!

Hannah Noel said...

He looks like an angel to me! (even with the hand signal ;))

I can't comprehend the hardships, or most importantly, the joys that you experience with C. I can only say Bravo! And I have no doubt that C will end up in great hands and care, thanks to you!

That girl, via David's POTD

Ellee Seymour said...

I'm so sorry to hear all about this too which must be agonising for you as C's mother. You know what, you should open your own school to help C and others like him, it would be brilliant.

leslie said...

It is so important that you keep in touch and visit as much as possible to let staff know you're keeping an eye not only on C but also on them. There are similar problems in geriatric homes, as we found out when we had to place my Dad.

I love that second photo of C - he looks so calm, relaxed, and happy. I think that is evidence that there is hope here.

Yesterday there was a walk for autism right here in my city and the condition is getting a lot of public awareness.

Mimi Lenox said...

You are a phenomenal parent. Take care.

whimsical brainpan said...

I love the last pic of C.

I can't say it enough, he is lucky to have you for a mom. It doesn't surprise me one bit that parents "dump" thier kids off at these homes and don't stay involved in their lives.

But because you do care and stay involved you have helped not only C but hopefully the other patients there as well.

Jocelyn said...

Is it wrong of me to be agog at 140 comments on this post? I mean, it's worthy, of course, but WOW.

In all your many insights into life as you know it, I can't believe I've never before thought about that question of "What happens when I'm gone?"

Oh, honey, the way you keep afloat inspires me more than anything.

Paulene Angela said...

Hi Casdok,

I'm a new blogger and I am so happy I have found your blog and found you and your son C. Unfortunately I've not had time to read all your blogs, just this recent post. I have a loving son of 15 years (will post photos later for your other website). From an independent view C looks really happy (in the framed photo), I do not see any sign of anxiety on his face.

Like you, I face day in day out problems, Max's school sometimes drive me mad with their seemingly strange ways, attitudes, labels etc. but after my blood level has cooled down I try really hard to meet them half way, for me it is the best positive solution.

I think you doing a fantastic job and you have so much knowledge that you can guide them!

Congratulations mum

PS Can you not go in for a few days to liaise with them?

Ian Lidster said...

How distressing for you. May it all work out well.

Mima said...

Oh Casdok I am so sorry to hear that C's new home has not been going as well as you hoped. It must be so difficult for you when you know so well what his needs are to watch other people failing to meet them, and trying to let them find their way to the right place intervening enough to make sure that things are right without interfering so much that you put them off. A horrible balancing act to have to maintain.

I really hope for both of you that things are settling into a much better routine now, and that you are much happier with what the home is doing.

CAMILLA said...

Hello Casdok,

So awful that the Home was not acting as it should have been, you were right to bring it to the Manager's attention, for it is your darling 'C' that has your welfare heart and want what is the very best for him.

A lovely photo of 'C', you are a wonderful mother Cadok, what a shame others are not as patient and caring as you are.

xx

the mother of this lot said...

Well, I always knew you were a rare parent!! I love the picture!

Nancie said...

Sorry to hear of these hard times. I am glad C has a loving and caring mother. May God bless and guide you and C, and provide for your every need. I am keeping you and C in prayers. Take care!

Palm Springs Savant said...

Casdok- Wow what an eye opener. Sorry it has been a disappointment. I can't even imagine where you are with all this. This is your SON whom you love so much. That last photo does seem uplifting. I hope your blogging helps you sort things out a bit.

Billy said...

Hope things start looking up.

autismfamily said...

That pic is sad, but nice to see the second one looking cheery. Looks like they got the message. Hardest part is hearing about being a rare parent. Do they have meetings or events to meet other families to connect?

nitebyrd said...

Casdok, you are the best mother C could ever have hoped for. The fact that you care so much may have impressed the staff at the home, at least I hope so. Finding caring, loving people in any profession is very difficult but this is a profession where it is required.

C does look very happy in the second picture. A small token to start on a long road to rebuild your trust, yes but his smile speaks volumes. I pray you'll see this smile more and more in the future.

French Fancy said...

So sorry to read about your worries with the home and that I really hope you son will be okay in the end.

I came to you via the Black Books link by the way.

French Fancy said...

I came back to reread your last post. I don't think I truly realised the enormity of the worries you must have had in your life. Yes, those 3am moments are very hard. Let's hope you've kicked the staff at the home into touch and you will feel reassured after your next visit.

Green Girl in Wisconsin said...

Oh, oh, oh dear. My prayers for you and C continue (truly) and I hope with your advocacy things improve for your son. I love that picture of him--I hope it comes to the point where moments like those are the rule, not the exception.

Cyndi said...

Oh that breaks my heart about the reidents whose families have basically written them off...you should adopt one! I love the pic they sent you. I do hope it continues to get better and I totally understand your concerns (sigh).

Motherhood for Dummies said...

I hope that things start to go better for you two and that the home starts to get their act together!

Dad Stuff said...

I'm sorry and disappointed that C's new home isn't delivering on their promise. But you did the right thing to try and work with them. It's good that they seemed receptive to that also. How many challenges have been solved by good communication?
Keep being an involved parent.

motherx said...

This makes me so angry! You must feel terrible and I really feel for you. Im very sorry and I hope things improve. Well done for having the gumption to complain, I know I def would. It's one worry you could do without. I'm really sorry.

KC's Blog said...

I hope things get better. We hold you two in our hearts and prayers.

C is beautiful in the photo in the sensory room. He's got a beautiful smile!

Kari said...

I have been a nurses aide in a psychiatric home and with Alzheimer's patients for many years. I have observed some people are better at the job than others. I hope your son has some real loving nurses or aides. Must be so tough! I hope to read in the future that C is coming home looking awesome and smiling. It most definately is going to help him best if you stay involved and continue to keep the communication open with his care providers. If it was me I would request to be present while the aide assists him. Maybe you can make suggestions on better ways to help him. Does he have a care plan? I had one patient that used to jump at me and hit out and often grab me. I was afraid but knewhe was a nice man. I figured out it was because he was confused and thought I was trying to make sexual advances. This mans wife often came and did his care herself. I requested one time that she allow me to do it with her there so her husband could understand it was ok and that I was his nurse. I never had a problem with him again. I know it's not the same situation but sometimes all it takes is one little trick and it can make all the difference.
This is an awesome photo of your son. What a great smile. My son has a sensory room at his Preschool. He just loves it. I have been in a few times and wow it is so relaxing I almost fell asleep. :)

Casdok said...

They are good arnt they!
Yes C does have a care plan. And thank you for your thoughts as you say sometimes all it takes is one little trick (or a few!)