Friday, 12 December 2008

Wasn't prepared

I wasn’t prepared for C growing up so fast!!

C has been in his group home 5 months now.
I wasn’t prepared for the adult world being so different to school. We try and prepare our kids with transitions but no one prepares the parents.
I wasn’t prepared for the nightmare sorting C’s benefits out. I should have known better!.

I wasn’t prepared for the number of socks they loose! Guess what C needs for xmas!

I wasn’t prepared that since C’s move he would loose nearly 8lbs in weight. And as you know he cant afford to loose weight.

I wasnt prepared for the first 3 months they didn't take C out. That's why i did the post about When labels dont help.

I wasn’t prepared that as C wont let anyone near him to cut his nails (some are now ingrown) or brush his teeth that he now has gum disease and will mean he will have to be knocked out. This why i did the post about stress and pain.

I wasn't prepared to receive in the post a 'Service User End of Life Policy statement' - (they had prepared me that i would receive a letter about staff Christmas holiday rotas) it was very gruelling reading., about how they would lay his body out and dispose of his possessions.

I am used to seeing psychologists pretty charts of Cs head banging with usually little or no explanations or actions.


But I wasn’t prepared at Cs latest review to see this chart of the frequency. Their intervention plan said ‘may prove challenging’. Very helpful.! But it dose explain why they are unable to clean his teeth and cut his nails and not take him out etc etc . But they didn't tell me all this. Did they really think because C does not speak or sign - I wouldn't notice these things? Also interesting the only part of the graph they showed me was where there was a dip.

Maybe I should have for seen all this as I knew C would find the move hard but I hadn’t realised what it would mean to his health. To be fair to them I think all this would have happened anywhere C had gone.

I do think C is now over the hardest part for him. He is now a bit more trusting of a couple of the staff and i now have a couple of allies to tell me things. So there is at last a glimmer of light at the end of the tunnel.


The other week when C was home I was buying a train ticket for us both - turned round and he was gone. As in a puff of smoke - but there was no smoke!! And no I wasn’t prepared for that! Even though I have lost C a few times in the past - its been a while! I scanned the ticket office, I scanned outside my mind going into over drive as all the stories I had read on Autism Vox and F.R.I.D.A. flashed through my brain. I ran over to the man on the ticket barrier and asked if he had seen my son ‘oh yes I let him through’ I dashed past rounded the corner and found C waiting looking very distressed. Phew!
On the way back I asked the man on the barrier why he had let C through - he told me C was following someone who looked liked me but with longer hair!

I had my hair cut during the week.

108 comments:

Cathy said...

Oh my word, you have had so much to deal with over this transition. We were just taking about son 2's possible future yesterday and I am dreading it.

Strength and hugs to you and C.

Cx

Debs said...

I do hope that C puts on weight soon and that his teeth and nails are sorted out. I'm glad that you've made some allies at his group home, and that the worst of the transition seems to be over for him, but I can't begin to imagine how horrible it must have been reading that policy they sent you, dreadful.

Sending you both love and hugs. x

She's like the wind said...

What a stressful and anxious time for you both, C's whole world and routine has been turned upside down, hopefully in time he will settle and the group home will realise what a caring mother you are and look after him well. xx

Cheryl said...

This made me so sad. As parents, we want to do everything we can to make sure our children get the best possible care. You have always been so clear about what C needs and what is or isn't effective. You did everything in your power to make sure this transition would be a positive one. I can only imagine how painful it was to see that report and to deal with the weight loss, teeth issues and his toe nails. You did so much to prevent exactly that!
I'm glad to hear that C is starting to trust some of the staff and that you have a few people who let you know what is going one. From here, I'm praying and hoping that it can only get better.
Change is so difficult for all of us, for a person with autism, who takes comfort and finds safety in routines, it must be 1000 times worse.
I will keep you both in my prayers. Sending you lots of love and support. You are such an amazing mother, don't ever forget that, not for one second.
XXXXXXX

Jen said...

I think that sometimes we concentrate so hard on preparing our kids that we forget that transitions can be hard on us as well.

I'm glad that things seem to be getting a bit better!

JoyMama said...

May the improvements continue to increase, and the unfortunate surprises decrease!

Big hugs. You and C have been through so much.

Marita said...

That must be so hard for you.

I hate that as a parent I can do everything in my power to prepare my child and it still isn't enough. I just want them to feel safe and happy and I can't always make that so.

Praying for you and C. I hope things start to improve now that he is getting used to some of the staff and the routine.

BenefitScroungingScum said...

Oh Cas, I'm so sorry to hear how difficult things have been for you and C. Big hugs. I'm glad there is some light at the end of the tunnel for you both. If you fancy a couple of days by the coast email me, I have a spare room (maybe not for much longer but for now!)
Thinking of you both, love BG x

Mrs. C said...

Oh, Casdok, I don't even know what to say. Losing him at the train station is such a frightening possibility!! My heart would have stopped, too!

I'd be a little afraid of cutting C's toenails, too. Such a trumatic experience for him. Bless his heart!!! I was hoping to hear that things had settled down a little... and I guess they have... My heart just broke reading the disposal of things, etc. And graphing his behaviour! OH BOY I'm sure glad no one does that to me! There would be a "negative incident" for sure if I caught someone getting out their pencil while I was nagging at my teens... LOL

Socks for Christmas. I think you should have Santa's little brother pick them out because he has such innnnteresting fashion sense! :p

Have a merry one!!

Maggie May said...

I was very sad to read all this. Surely basic looking after like nail cutting and tooth care should be a compulsory thing that staff have to do.

The incident with the ticket man makes you lose all hope in the common sense of strangers.

What are you going to do about the nails and tooth care?

What a horrible lot of things that you have to cope with. You must be a strong person, that's all I can say.

Casdok said...

Thanks Maggie - I wouldnt say i am strong, I just love my son and want the best for him. I agree with you about Cs basic care but i also know at 6 foot when he head bangs it is impossible to do such things. They have tried so much that he now wont let me near him to do these. Any suggestions would be greatfully accepted!!

Mrs C - there were also 5 other charts covering his other SIBS.

My Autism Insights said...

You've been so strong through all of this, it's such an inspiration. It seems as if things are on the upswing, and for that I am very glad. I hope the trend continues.

*hugs*

Halo said...

I hope the light at the end of that tunnel comes sooner than you think for you and C.

L mistakes me for other blonde hairded women and is always going up to bald headed men at a local childrens play centre (her dad has a skin head).

Sending you my love xx

Mama Mara said...

Glad you posted all this. My oldest is a few years away from transition, but it sounds like I ought to start preparing MYSELF for it now.

starrlife said...

I'm almost speechless with sadness and, not too supportive I'm afraid- anger! Are you his legal guardian? The fingernails and dental stuff seem doable and the thoughtlessness of the communication is hard to figure out! Hugs and hugs and hugs....

bobbie said...

It is so hard letting go each step along the way. You must be completely stressed out over these developments. Thank God you now have a couple of allies and will be getting a little more information. Not knowing what is going on must be the hardest.

My wish for you is peace of mind and the knowledge that your son is being well cared for.

Bonnie said...

Hi Casdok. I feel so bad for C's health concerns. I wish my sister who is an excellent Occupational Therapist could give you some advice on what they can do at his residence. When ever I hear such things I always feel like there has to be an answer to deal with issues, but one has found them yet.

Hang in there!

Norah said...

I remember when I accidentally followed someone who looked a lot like my father we were at a shopping centre), and when I figured out he wasn't my father, I was:

1) shocked at realising this was a stranger

2) distressed and panicked at no longer seeing my father anywhere

So I cried really hard and then he found me.

Flea said...

I hope you're past the worst of it now, that C levels out some. And that you both have a merry Christmas.

Honeysuckle said...

What were they thinking of, sending you the End of Life stuff? That's bizarre and hurtful - as tho' they have a list of things they have to inform you of and they just work through it without ever thinking whether it's necessary or kind at that particular moment or how it would make you feel. It really was incredibly insensitive.

No idea about the toenail cutting and teeth issue; we always found both of those a problem too. A book of hints and tips from a variety of mums/carers on any issues like this would be great.

kristina said...

Such a lot for you and for C---can't believe that about not attending to teeth-brushing and nail-cutting. Do you know for sure if they'll _make sure_ they attend to those? Poor C, of course I can see how the head-banging would increase----perhaps he felt that was the only way to communicate something?

And your story of him running at the train station reminds me of the last time Charlie wandered away from me a a grocery store. He'd just gone to look for things and I've ogtten so used to him staying by me that I didn't think he'd go off (he certainly didn't think he was lost).

Thinking of C and you---kristina

feebeeglee said...

From my daughter, I am typing verbatim:

Thanks for your comment about my hat! It was hard to do but I kept doing it and then all of a sudden it was done!

C looks like a fun person to be around. I like his happy dance. My brother is autistic and I have many autistic traits. I think autism can be hard sometimes and messy sometimes but everyone needs to love each other and it will all be ok.

Jade said...

Many of my friends who have children on the spectrum or the parents of the children I work with are often not prepared for the challenges they have to face when living with autism.

In my opinion it is almost impossible to be prepared for everything that will be thrown at you while riding the "Autism roller coaster"

What I find amazing and beautiful about you is that even though you might not know what to do, what to say or where to go, you figure it out with grace and dignity. And not only do you figure things out but you then take that information that you've obtained and you share it with others facing the same situations so that they can be better "prepared". I just see that as a very beautiful thing.

You have done so much for so many just so they can be "prepared". Support groups, posts, conversations. So, please, don't put yourself down because you haven't been "prepared" 100% of the time, no one is. In fact, you deserve a glass of wine, some chocolate and a hug for helping to prepare the countless number of people you have with your journey.

You are amazing my friend and I'm very glad our paths have crossed. :-)

Kit Courteney said...

Is there an award for "BLOODY AMAZING MOTHER"...?

As you say, these issues (or many of them) would no doubt have arisen wherever C was, but all I can say is thank goodness for your common sense way of handling things.... And for your patience!!

Maddy said...

I don't think we can ever do enough preparation. No matter how hard we try and anticipation, invest in crystal balls and so on......

I had the exact same haircut experience too.

Best seasonal wishes to you both

Mama Monkey said...

I hope things start improving soon. It is heartbreaking for a mom to arrange the best possible placement and have so many unpleasant surprises.

Also, you wrote: "I wouldnt say i am strong, I just love my son and want the best for him."

If that isn't strength, I don't know what is. :-) HUGS

blogthatmama said...

It sounds so hard, surely C should at least have his teeth cleaned and his toenails cut? I agree with Kit. Blogthatmamax

San said...

Casdok, your strength is such an inspiration to me. I'm glad you share these daunting troubles with us.You have so many friends here in blogland who are in your corner, wishing you and C the best.

Sorry I haven't visited you in so long. I've been really lax about visiting blogs, even tending to my own. I finally got around to posting some awards, and one of them is for you...

rhemashope said...

I'm so sorry for how difficult this transition has been for both you and C. You say you don't consider yourself strong, but I see such a woman of strength and courage in between these lines. You have endured so much - just to come through it with patience, wisdom and the insights you share here - makes you incredibly strong. I'm praying that things will get easier for C at the group home.

Cheri said...

It was poor form to send you the policy in the mail. That should have been taken care of when you filled out all the paperwork to get him into the home. That would have freaked me out so bad.

It takes a while to learn a new place, and for the new place to learn you. I hope C starts to feel at home soon.

Chris H said...

A bit of a rough patch obviously, hopefully he really has settled in now and things will get a bit calmer?

Get Off My Lawn! said...

Sounds like YOU need some Christmas presents and what-not. I'll buy you some socks and put a little ribbon on them. SOunds stressful. Make sure you are taking care of yourself.

Akelamalu said...

OMG you must be so worried about C! I cannot imagine what you must have felt like getting that policy through the mail - how insensitive. :(

Kahless said...

I think you are a wonderful mother to C.

Lady in red said...

I sincerely hope you are right about that end of the tunnel finally being in sight.

Green Girl in Wisconsin said...

I cannot imagine the panic of that moment. I hope your son has a better go of it now that he's been there a while--his poor teeth and nails and gums---I'm keeping you both in my prayers.

Mistress B said...

How do you prepare yourself for some of that? You can't. You just do the best you can as it pops up and you do an amazing job of that.

CC said...

wow. HUGS!!!!!!!

Attila The Mom said...

Oh geez, what a nightmare.

Little Guy has taken to getting up and wandering around the house in the middle of the night. We've been discussing getting special bolts on the doors so that if he's sleep walking, he can't actually go outside.

Even when they're big, it's just as scary.

xoxox

abstractjenn said...

Now that I am on winter break from school I am going to go back and catch up on all the postings about C that I have missed.

It sounds like you have a lot going with C and I hope you are taking care of yourself as well as taking care of him!

Tanya @ Teenautism said...

We as parents think so much about preparing our children for the future, but it's so easy not to prepare ourselves, especially emotionally.

So glad to hear that everything turned out all right with C being lost! That is such a horrible feeling while trying to locate them - I have hated it every time I've gone through it.

I hope that C will be more comfortable soon and that both of you have a nice holiday season.

kristi said...

I am very sorry you are going through this. I know I have to cut TC's toenails after he is asleep. He hates having his hair cut too. One of us has to hold him and the other has to do the hair cut. It is really hard as he gets bigger.

frogpondsrock said...

Oh Casdok my heart breaks at the thought of the stress you must be under..

At least you now do have some allies in the group home. Small comfort I know..

xxx kim

LceeL said...

I know the adjustment for him has been hard - and if it's hard for him it's also going to be hard for you. I hope he is learning to trust. I really, really hope so.

Marla said...

My heart breaks reading this. So many struggles and they never seem to get any easier. I can only imagine how intense the red tape and the advocating is for you and C. Don't give up. I am sending you prayers and hugs.

deb said...

It's hard, hard for our kids and hard for us. Katie has been gone a year now and it's finally good but I imagine there will always be problems that pop up. She's coming home for Christmas for three days, should be interesting.

Sending a hug for you.

Rosie said...

change is scary for everyone but so much more so on the spectrum.
I hope you get these problems sorted out..toenails and teeth seem such a small thing but nothing is easy.
Headbanging and the weightloss must be very worrying for you. I suppose it is not easy to get someone who is six foot tall to put on a helmet...

The Dotterel said...

Thinking of you and of C, Jen.

Half rabbit said...

I can really feel for him loosing all that weight. I have trouble eating when stressed as well and 10 pounds would only be a pound or two off 10% of my entire body weight.

Maybe I should think twice before filling out the group home forms.

I wish you luck, you're doing a great job and things can only hopefully get better and less stressful for C.

DJ Kirkby said...

OMG! I felt sick when I read tha tyou had lost C even if just for a minute. I would have cut my hair too (can't wait to see what you look like). Do you think that they could have a podiatrist in the operating theatre when C gets his teeth done, then they could sort his toe nails at the same time. Alos do you know when the dip on the graph occured? Sending you a big (Aspie) hug. xo

Casdok said...

The dip was when they started taking C out. Yes am on to his nails getting done at the same time.

mumkeepingsane said...

Oh, I can't even imagine how you felt when you got that email. Have they ever suggested/tried anything to de-sensitize C to the teeth cleaning and toe nail clipping stuff? Or have they been working on maybe teaching him to do those things himself. I imagine it would take a LONG time and would be difficult but...isn't that what they're there for?

I'm sorry this has been so difficult for both of you.{hugs}

laughingwolf said...

hoping things continue to improve for you both, cas, hopefully faster

all the best for xmas!

buffalodick said...

I have mentioned before nobody can take of him like you have..

Anonymous said...

Hi Casdok,

Longtime lurker...er, reader.

About the ingrown toenails - my son went through them and had them cut away four (very painful) times by his regular doctor before we were finally referred to a podiatrist. They have to give serveral shots of nerve blocker directly to the nerves of the toe affected (apparently our toes have tons of nerves - makes sense but who knew?). Make sure that the podiatrist doesn't just cut away the ingrown nail but also uses the formula that helps inhibit the growth (wish I could remember what the name of it was). I would certainly recommend doing this under anasthesia (sp?). They gave my aspie guy valium and he was pretty brave about it but it still hurt. I would imagine that C would be happier sleeping through it. Just my 2 cents. Good luck and warm thoughts,
Kate

Casdok said...

I had wondered if there was something that inhibs growth, So thank you for that Kate.

rainbowmummy said...

Ok, that's a lot to deal with, I am glad you are sharing, to keep reminding me that one day Egg will be an adult (noooooooo my baaaaaaaaaaby). I hope you can work with your allies, not that you should have to. Well now they know that you will notice evrything, I hope they sort them selves out. Transition is hard (for the parents), I hope it gets easier.

ps Stop mixing it up with Suz, I don't want the handbag for my jellybeans, I don't evevn like them what on earth gave you that idea, LMAO.

nitebyrd said...

We have an OTC medication here called "Outgrow" that inhibits the growth of ingrown nails. You might check over there but it's something that has to be applied everyday, I think.

I hope that the worst is over for both you and C. I cannot even imagine the anguish you've both been through. As always, good thoughts and positive energy being sent to you.

Jenster said...

I have nothing helpful to add here. Just that C is so lucky to have such an advocate as you.

Thank you, yet again, for giving me a glimpse into a life I had no idea about.

Jodi said...

Wow. Just wow.

Jessica said...

I can only imagine your frustration and anxiety levels these days. I'm praying for you that everything is figured out quickly like the nails, head banging and food issues.

My biggest fear is Wesley wandering off. Some of the parents here in our city are trying to get a tower and training for our local fire department on location devices. Right now, the nearest one will take 15-20 minutes before a signal is recieved on where the child is located. That's far too long.

J said...

I wouldn't be prepared for any of that either. Yes, big transitions affects both the child and the parent (as we anxiously monitor how children are dealing and how others are treating them.)

Having the treatments by the dentist and podiatrist done at the same time is a brilliant idea.
Glad you found C at the train station.

Hang in there! Hopefully, you'll see your much awaited light at the end of the tunnel soon.

Traceytreasure said...

My heart goes out to you both. Sounds like you've both been having a tough time lately.
How can they let him lose weight?
Oh Casdok, I hope things get better and stay better for C real soon!!

Big hugs and love, T

Trixie said...

All these trying times...I'm sure will all work out in the end, as you said..you are at the end of the tunnel.

Bobbi said...

Gosh, that has just got to be the hardest thing ever. I hope things just keep getting a little easier every day. I will keep him in my prayers. That has got to be so tought to not be in the "know" of whats going on with him all the time.

Jenn @ Juggling Life said...

Transitions are so hard under the best of circumstances, let alone with someone who is non-verbal. I have a friend who is just beginning to look into a home for her son--I know she thinks of his transition much more than her own, so this will be good advice to pass on to her.

menopausaloldbag (MOB) said...

The world would be a be a better place if we had more compassionate and understanding people like you. I was very emotional reading this and wonder at how you keep going without your heart breaking into a thousand parts.
You are one very tough and strong person that has my complete admiration. Tough times as you both adjust to his adulthood and having others more involved in your lives. Change thrust upon us is rarely wanted but had to be endured but you have such a great outlook that if anyone can cope with it then it is you. X

A Bishops Wife said...

Sending you hugs.

I an sorry I do not get around to comment much. Loosing him at the train station had to be frightening.

I admire you so much.

Merelyme said...

I do hope things improve in the months ahead. I greatly admire your strength to deal with all of this and especially during the holidays. My thoughts and prayers go with you and C.

Mama Zen said...

Transitions are so difficult. I'm glad that there is starting to be a glimmer of light!

Mima said...

I'm so sorry that you have been having such a hard time of it, and I can't believe that they sent you end of life stuff, that must have been so gruelling to go through.

So glad to hear that you think C is finally settling a bit, I don't know how you could have foreseen any of this. I can't imagine how difficult it must have been to be relinquishing control of his care and not jumping in when things have gone wrong.

I hope that the next year is better for you both.

Frogs' mom said...

I am so sorry you and C have had such a rough go of this transition. I hope 2009 brings a bit more of that light into view and the bumps in the road begin to smooth out for both of you.

Grit said...

you are one strong woman. here's hoping that the worst for C is over here and that these experiences have been in some ways helpful for you both in the future.

Goldie said...

OH dear I had no idea it was as difficult as this. I knew it was tough, but the teeth and nails part made me really sad.

I hate it when my son runs away. they are darters! glad he was okay! hope you both enjoyed the train.

Dianne said...

I too hope the new year brings some peace along with clipped nails and teeth brushing

I think of you and C often

Punya said...

Transitions are so tough. My son is not happy in his group home but his ordeal is not as tough as C's. My boy complains because he has to clean up his room and do chores. Credit to the staff as they have developed a set of goals for him to move forward. Myt biggest complaint is not being involved in those plans.

david mcmahon said...

The glimmer of light sounds good to me.

claire p said...

I know we'll have to go through this with Jamie one day, oh hell!! I'm not kidding it keeps me awake at night already.

Keep strong x.

Mama Deb said...

Transition is just so flipping hard on our kids! If only we could *really* understand it. Our move to California was so much harder on my son than I ever could have realized. I am so glad that you feel the worst is over, and even more glad that you have some allies to tell you what is going on.
Casdok, you and C have had a very difficult road. Wishing you many blessings this holiday season.

JUST A MOM said...

Stopping by to check on you,,,hang in there and I pray you have a bit of calm in your holiday

Warty Mammal said...

I can't even imagine what you and C have been through. I'm so sorry.

The nail and gum thing - argh! I relate on some level, because until very recently I had to literally hold my child down to brush his teeth or do his nails. However, that's the responsibility of caregivers: to do what is necessary as gently as possible. I don't suppose it ever occurred to those people to give you a call and either enlist your assistance or ask for advice?

The "Service User End of Life statement" sounds terribly cold blooded, as does the rest of what you've been through. One gets the sense that on a bureaucratic level people really don't "get" that parents of the children in group homes care about them. They are people, not "service users" or an ID number or a case number.

I'm going to keep a kind, optimistic thought for you and C. You did a great deal of research before C entered this group home, and as other people have pointed out, transitions are very tough. It took the better part of a year for me to get my son to voluntarily go in the classroom at his preschool, so I can only imagine that for C, with almost no ability to communicate, the transition is even more challenging. I think, I hope, that as long as he is treated with consistent kindness and patience, things will work out well in the long run.

FANCY said...

I get a million thoughts and have to say that I'm admire you for you true loving engagement...You give what your children need and that is a mother's love.

Seen This Scene That said...

Thanks for sharing the heartaches and the suggestions that others have offered to these multiple problems.

It is really heartbreaking to read. Stay strong!

captain corky said...

You're an amazing mom and I'm glad that C is starting to trust some of the staff.

MMC said...

(((((((Casdock))))))
(((((( C ))))))))

Faith said...

It's so difficult and worrying for you, especially about C's nails and teeth, and the head banging. Sending you and C best Christmas wishes.

Lane said...

So much to deal with, for you and C.

I'm glad there's a glimmer of light and you have some inside allies.

Take care x

Holly Nappi Collins said...

Boy oh boy, do you get a lot of comments...it took like 5 minutes to scroll down!!;)but this is so good for you. you have so many good friends here to help you. I do feel for you. Your life and situation is not unlike mine. My daughter is 13, but one day her new home (when she's 22) may not be as good as the program that she's in now. Who knows, as you say, I may not be prepared! I know you mentioned that all programs would be like this one, so I wont mention that maybe another program will be better... you know best. It's just so hard. And I do understand... And I felt your stress at the train station and your son's too.

citizen of the world said...

Wow, what a lot to wrap your mind around. I'm sorry. (And yes, I thought of you when I posted about that pompous Denis Leary.

Dave Coulter said...

Wow. I wouldn't even know where to start...this has to be beyond frustrating. I have to hope that light in the tunnel continues to brighten for you both - it better, darn it!

:)

Angela said...

Glad you found him and hope things get a bit less stressful.

It just isn't easy no matter what you do.

Crystal Jigsaw said...

You handle this so well. You are an inspiration to all parents.

CJ xx

Sass E-mum said...

Things don't get easier when children get older do they.

You write a very inspiring mother's blog - so I've given you an award.

lisadom said...

Wow< here I was feeling sorry for myself that Boo has facial hair, and has started having anxiety tantrums again recently; when this puts it all into perspective. You did the right thing by trying to make him independent of youl and yet the worries continue. I feel in these circumstances that we should make signs to put on the sides of buses "just because we cannot talk - doesnt mean we cannot complain" Meaning that stress will always find an outlet.

My own limited experience with residential respite taught me something of the de-humanising assumptions made by "care workers" and administrators.
I was upset that Bratty had attended overnight respite at age 8 as we felt we were bullied into it, and the social worker said "yes, I realise you are very attached to her"
#"£$%%%%$$££"£??!!
Like she was a new poodle or something? Of course I am attached to her, she is my daughter!!
Do they think that we do not bond with our kids so well because they are not "typical" WHA the FUH!!

And trying respite again recently, this time in a better setting which Bratty seems to like, I noticed her toothbrush is dry when I unpacked her bag. Here I was assuming that they would prompt her and assist her in self care...
lesson to Mammy; Do not assume.

But Cas: I can see where you could get help for C. There is a fellow called Vincent Carbone who works with adults in his New York City clinic, he visits the UK frequently. The clips I saw at his seminar were of self and other harmers (a big guy who would beat up all carers was in one of them( and with observation and analysis of data, they were identifying the trigger before the behaviour and stopping it. So by the end of the clip the guy was being diverted from harming anyone, and accepting the new behaviour.

He costs a BOMB of course, but I reckon we could approach Treehouse for help. Arsenal Football club and Nick Hornby support that school and charity, and The U.Ks most popular autism blogger should be due some help.

If you are interested drop a comment in the IrishAutism blog or email me.

C deserves the best quality of life possible and you are giving him so much of what no one else can: LOVE. Everything else can be sorted out, as long as there is plenty of love.

Blogworld is obviously sending you plenty of top up love to help you out at this stressful time.

And we are never prepared Cas, never.....

xxxx

lonestar said...

I am so sorry that C and you are going through this rough transition and do hope that the hardest part is behind you both. How upsetting that the staff wasn't filling you in, isn't that their job? I'm glad you found some allies to keep you informed. Hugs and prayers to both of you!

Kelley said...

I am hyperventilating.

Love you babe. Really. Wish I could come and hug you.

Angela said...

(((OH CASDOK)))...that is a lot to take! Hoping your transition gets easier.

DJ Kirkby said...

You won on this week's WW. xo

goodmum said...

You and C have had so much more than your share of struggles and adjustments. Life is truly a beotch sometimes. I really hope that things settle down somehow for C in the coming weeks.

LceeL said...

While I have a moment - and am thinking of this - Merry Christmas, My Queen of the Internet. From your Loyal Subject. and to Prince C, as well.

motherx said...

That sounds so tough, I really am sorry and scared as I have all this to come. You must have been terrified when you lost him! very stupid of that man to let him through.
Hope you have a good Christmas and if you want to meet at anytime in holidays then hopefully we can do that. xx

E said...

I just wrote about i=our journey with our oldest son. And we are having a very happy moment. But I thought his road had been long and often hard. Then i come over here and I realize that we have it easy.
Blessings to you and c this Christmas. May the new year bring gentler days after this hard transition. It has to get easier from here. And you Ms Casdok...you simply and joyfully and constantly rock!

Samantha said...

I'm sorry to hear things have been so difficult for you two, but here's hoping you both have a wonderful Christmas. *hugs*

Warty Mammal said...

This has nothing to do with your post, but thought you might enjoy this quote from a column on Salon.com:

"The best line I have seen about autism was on a t-shirt:

I am NOT a defective dog, I am a perfectly good CAT."

She said...

YOU DEFINITELY INSPIRE!

Such a beautiful rendering of your feelings about such a difficult time!

Punkys Dilemma said...

I'm so sorry Casdok. I have nightmares of having to place my "little one"...who isn't so little. She's twenty years old and her very survival relies on me. She is totally dependent and my body is breaking down as well. It's difficult, isn't it.
Take care Casdok. You amaze me with your courage to fight the good fight. It's good to know C is adjusting. I'm so sorry about his gum disease and nails.

Casdok said...

Thank you. It is very difficult, but i will carry on the fight for C's and others sakes. These homes have to know we wont put up with anything less than what our kids deserve, and that is the best.
You take care to.

Amber DBTD said...

You are such a strong, amazing, inspirational woman, Cas. I applaud you pushing for the best for your son, he is lucky to have you, and you to have him. I hope things ease up a little.

There's no excuse for gum disease and ingrown nails... that's laziness... shame on them.