Tuesday, 21 July 2009

The future

2 weeks till C moves. Sleep alludes me as thoughts run round my head. Visits to C’s new home are going as expected –difficult, traumatic. But each visit getting a little easier, its hard to know how much he understands. In this last year he has worn his helmet out – and I want to put him through a move again. The decisions we make for our children are over whelming at times.
And both C and i have been managing our stress in different - but the same ways.




After 2 years of searching for a home a specialist home I thought would meet C's needs where he could grow, and had the right experience to cope with C’s level of challenging behaviour. But I knew after only 3 weeks it was not the right place. But I gave them a chance, and C a chance to settle. I tried talking to them. But the things they did continued to shock me, sadden me. I started looking elsewhere. I don’t entirely blame myself. Their initial assessments should have shown them it was not the right place for C. But they went ahead. They did a good PR job on me. They failed my son.

This time I feel the assessments have been a lot better and I have been involved. I was actually asked to go over Cs PCP – a first. I’ve been made to feel my insights into C are valid and useful. After all C has been training me for nearly 21 years.

I am also being involved in some important consultations where I can put C’s/my experience to good use. You can get involved too. And maybe we can save other people from going through what C and many others have had to endure.


and the


The CQC’s draft guidance is very encouraging and positive. They will have new powers to ‘enforce’ standards and will not just have an impact on ALL care homes but other care providers such as GP’s, dentists, hospitals etc


Autistic people need allies and not just from parents. When C was small my motivations were getting him the right educational support etc. My views have evolved over the years and its now more about his human rights, dignity, respect and choice.



If we cant change the attitude of people who work with people with Autism what chance do we have with the rest of society.

74 comments:

The Dotterel said...

Sad - but depressingly familiar - final sentence there, Jen. What hope, indeed. Thankfully there are plenty of people out there who do understand and care. Let's hope the move goes well, and C finds himself among some of them this time.

Akelamalu said...

I can only imagine your's and C's distress and dismay. I'm keeping my fingers crossed that the new place is everything you are both hoping for and needing. xx

bobbie said...

My thoughts are with you so often. This must be such a trying time for you both. I pray all goes well this time.

Such strong videos!

Maggie May said...

I really, really hope that C will find that the next place is so different and all needs will be met. It is quite shocking the way things were in his last residence.
You must be very worried and he is so lucky to have you to be his mouth.

I watched all the videos on the post and side bar. Very strong and encouraging.

JennyMac said...

This is a very touching post...made me sad and inspired by your honesty and bravery at the same time.

starrlife said...

He is so darn lucky to have you! I love that consultation blog and the tubes! I shake my leg and don't even know it, I chew off my nails, chew on the inside of my cheeks, fiddle with the hems of my clothes- lots of them.... It's a hopeful thing that they asked to know more about him and didn't take such an 'expert' position, just a more caring one!
BTW- love that new faces blog!

Queenbuv3 said...

I'm so sorry you are going through all this stress. My thoughts are with you. I really hope this new home is a nurturing and healthy place for C.

I loved the clip from Youtube.com. I just did a post on 100% compliance not being healthy for any child, especially those with special needs because it sets them up to be victims.

Good luck with the move and keep us posted.

Beth said...

So glad you found a place that allows for your input. You are the expert when it comes to your son.

Queenbuv3 said...

Just watched that first clip with Bill Gates at the end. It reminded me of a guy I went to college with long before I knew anything about Autism. He used to rock back and forth really hard when we all watched tv. I just figured it was something he did and didn't think there was anything weird about it.

I believe that "stimming" is a need for a lot of people.

Queenbuv3 said...

Just added you to my fave blog list on my sidebar. You always have such informative and thought provoking posts!

Casdok said...

Thank you :)

nitebyrd said...

I'll keep you and C in my thoughts.

jesswilson said...

Watching that video, I was struck by 'Remember, none of us can be self-sufficient'

It brought to mind a favorite George Bernard Shaw quote that I keep on my desk ..

'Independence? That's middle class blasphemy. We are all dependent on one another, every soul of us on earth.'

We are ALL connected and we ALL need each other to get by - differing abilities or not.

Love to you and C - may this home be the place you both so richly deserve - nurturing, loving, understanding and respectful.

Angela said...

Praying that this is the ONE!!! Good luck, my friend. ((HUGS))

kathleen said...

I do so hope for the both of you-that this time it goes more smoothly-and I thank you for sharing it..my guys are all little now-I have to look at other peoples experiences to learn what what the future may hold-how to go about things..what to do..it is a twisty turny road..and I am always thankful for some direction. As always a wonderful post. Thanks. :)

DJ Kirkby said...

A good question! And one I have no answer for... Hope C is happier in hsi new home.

menopausaloldbag (MOB) said...

As an old I.T analyst with a degree in I.T. computer science I recognise the behaviour of Bill Gates very well. At the same time that Bill Gates was taking over the world with PC’s I worked with many gifted people who had science doctorates who were considered 'off the wall' in their behaviour. I saw many manifestations of OCD in the office on a daily basis. I have one or two myself that I need to keep in check. Many people have forms of compulsive behaviour that kick in when situations become stressful. If you take superstitions as an example - these are the kernels of obsessive compulsive disorders, (OCD). Not walking under ladders, avoiding stepping in cracks on the pavement, wearing ‘lucky knickers’ to get through that interview and so on are forms of OCD. These minor behaviours, when they get out of control in times of severe stress, become OCD in their extreme forms. We all have obsessive behaviours and it is just as the video says - some are considered 'normal'. The more we set ourselves tasks that have to be performed within set criteria, such as achieving something within an unrealistic time frame, the more we set ourselves up for failure, and so the cycle continues. OCD is us setting tasks that are achieved if the conditions are met.

The term ‘normal’ is a numerical definition set by statisticians to place people and behaviours into numerical scales to measure the population. Most of the population sits within the mean, (average), and yet those groups who ‘deviate’ from that one size fits all numerical definition, either lower or higher of the standard deviation are considered ‘abnormal’. Because the majority of the population fits into the normal range all education programmes and such like are aimed at the majority. That is why people with higher IQ’s and lower IQ’s are considered ‘special needs’. It is the same for people with a syndrome or condition that the average educational programme is not designed to cope with. People with Dyslexia are considered ‘special needs’ and yet the most ingenious university of all times in science and technology – the Massachusetts Institute of Technology, (MIT), is staffed with over 98% of lecturers who are at the extreme end of Dyslexia – all syndromes have a variant range of complexity from mild to extreme. Their brains are wired differently to the norm which is considered ‘abnormal’ in the ‘real’ world. Yet this university has achieved 73 Nobel Laureates, 47 recipients of the National Medal of Science, and 31 McArthur Fellows affiliated to the university. No small achievement. So, given such stellar academic achievement, who the hell wants to be ‘normal’ eh?!

Hammer said...

All you can do is keep fighting and advocating until things get changed.

I really hope C's next place is better for him.

mommy~dearest said...

Glad to hear of the move, but anxious knowing what's involved with it..

You guys are in my thoughts!

Awesome clip- I may have to post it too. ;)

deb said...

I sent this video to all the people at the agency that just evicted Katie. Hope it goes well with C. It never ends, does it? Sending a hug.

Mrs. C said...

*sigh*

Not looking forward to dealing with doctors and dentists as Woodjie ages. Right now, it's hard enough keeping him in the stroller for appointments... but when he runs and I have five other kids to deal with...

Maybe I'll make it as long as I never get sick or need help myself. :[

FXSmom said...

Thanks for the update on the move Jen. It sounds like this could be his spot. Hopefully you and C will never have to experience another move again.

Suburbia said...

A very powerful post.

Good luck to you both with the move, thinking of you.

Sx

Ron said...

Hello dear lady!

So happy to see that you posted!

I can't tell you how wonderful it is to hear that you'll be involved in important consultations where you can give your imput. I mean, this should be something that is a part of ALL places because it's just as you shared - you can save people from going through what you and others have had to endure. In reality...."you're" the expert.

Please know that I am always sharing "good thoughts and love" with you and C.

Hope you're enjoying your summer!

{{{{{Casdok and C}}}}}}}}
X

Debs said...

I hope C's move goes well for you both and that he settles in well there.

Those videos were so interesting. I learn so much from your blog, thanks.

Warty Mammal said...

I think the move will be rough initially, but it will be good in the long run. The fact that they are involving you more and taking you seriously is promising. If they aren't prone to "whitewashing" over situations or behaviors, you'll at least know what's going on. That would have been a major improvement at the last place.

It stinks having to make major life decisions for other people, but I think you have made the best decision that is possible at this time. That is all that you or anyone can do.

I'm going to keep a hopeful thought for C. He has your genetic material, which means he's made of good stuff.

The Hermit said...

I just happened across your blog while I was at Hammers.

My son is dyslexic, not the same issue but I know how it feels.

You do the best you can, that's all you can do. I always tell myself there's a niche in the world for everybody, it's just a matter of finding it.

Cheryl said...

I am praying that this new home will work out for C and the transition will go smoothly. I love how they have included you in the process and are embracing your knowledge of C (who knows him best) and hopefully will really listen and put your words into action. He deserves so much to be in a place where he is happy and respected and UNDERSTOOD. Your deserve to know that your son is safe and in a loving, caring and supportive environment. It just shouldn't have to be this hard, should not have to be so many battles to have his human needs met, like any other child. (HUGS).

Thanks for the information and educations. Please don't stop, it is a message that can't be said enough.
XXXXXXX

laughingwolf said...

let's hope things work out this time... the signs are positive :)

lime said...

i'm so glad you feel you and c will be more respected and supported in this new place. so very glad they've welcomed and valued your input.

Hippy Mama said...

*sigh* I sort of live a bubble, a bit of denial that everything will be o.k, but as J gets older I'm having to fight more.

thankyou there is so much information on your blog.


Best wishes to you both.

A. xx

Hammie said...

When I first got my head around the types of people you meet in schools, playgroups and social care settings I made up a name for some of them "bless ems"
These are the ones who feel that everything they do deserves a medal because here they are helping these poor unfortunate disabled people God bless em! (helps if you use oirish accent)
They don't ever want to change the way they work, they don't want to consider the rights, dignity, opinions and choices of the people they "mind" and the less they hear from parents and guardians, the better.
And they seem to be in the job FOREVER!

Then there are the ones who go on courses, listen to and admire parents and adapt to what they advise, observe and try to understand what their clients are telling them and change accordingly. These guys often move on to other things, annoyingly.

For C and for you Cas, I hope your new home is more Type Listen and learn than Type Bless 'em.

xx

Dianne said...

your last sentence says so much
and should not need to be written
it's so frustrating

I think of you and C all the time

Green-Eyed Momster said...

Thanks for stopping by today! I hope all goes well with C's move. I think about you two often and I'm always wishing the best for you both.

Great post! I learn so much from you!!

Hugs and love,
GEM

Chris H said...

2 weeks... wow I hope it all goes well.
I cope with stress by eating repetitively... tis not good.

Celeste Maia said...

I have learned so much from reading your entries and also the comment left by menopausaloldbag(MOB). I am passing on your blog link to some people I know who are very actively involved with the same problem. So your message is reaching here in Portugal. I hope that this new home will be the right one for C where he will be happy and you will feel so much better. Thinking of you.

Hey Harriet said...

I've just popped over from Bobbie's blog post. I cannot begin to imagine the stress you are both experiencing now. I very much hope things work out for C in his new home. He is lucky to have you as a strong advocate! I wish you both all the very best for a postive and happy long-term outcome.

Shrinky said...

My heart goes out to you hon, I so hope this move will prove all you hope it to be. I have just had a very depressing meeting with the adult special needs social worker regards my son's future options, none of which are remotely suited to his needs.

I never wanted to consider having him live with me for the rest of my life, because I want to know he is settled and safe before I die. I dread the battles ahead. Hugs.

Ellee Seymour said...

How very difficult for you. The home for autistic adults is closing in my village, it takes in residents for the whole of East Anglia. I have no idea where they will go to.

Take good care .xxxx

Rebel Mother said...

The world will change. It is slowly changing, but people like you make it happen.

Stay strong, be brave - you are a Pioneer - not just for C but for other children of the future.

Much Love RMxxx

mumkeepingsane said...

What a tough transition for both of you. I'm glad to hear the staff at the new place respect you and your experience with C. I love coming in contact with people who "get it". I hope it all goes well and this new place gives C everything he needs.

Maddy said...

Another huge transition......I feel a tad guilty actually as the title of the last video = do not teach me to be obedient, submissive and polite'......we have just been writing out a whole list of traits that 'aristocats' possess rather than 'alley cats' which we have arbitrarily deemed to be less desirable......it's the yeowling mainly.
Best wishes

Green Girl in Wisconsin said...

I hope this is the place--for both of you. You could both use a little rest from all the hard work of transition from the sounds of it.

Paulene Angela said...

Love the post. I definately can relate to the "good PR job on me" What on earth were they thinking of?

Sending you both lots of courage and hugs for these difficult days.

claire p said...

Here, here.

Crystal Jigsaw said...

It's happening at last, albeit rather stressfully. I'm praying that the move will be a good one and eventually C will settle.

CJ xx

Kahless said...

Mrs K does a lot of campaigning for equality of people with disabilities.

I see the knocks, the prejudicism.
It is tough. I am sure it is minute in comparison with what you and C have had to overcome.

I know you will keep fighting. My thoughts are with you.

Club 166 said...

Well, this does sound a far bit better. Hope that this time it works out for C and you.

Lord knows it should, if only from all the effort you've expended on this.

Joe

Honeysuckle said...

Oh! Just wrote long comment and then lost it!!
Anyway, the gist was that I hope the new home turns out everything you'd like it to be for C and that you can relax at least for a little while once C's established there.

I loved the first Youtube clip but was less sure about the second. For instance, I don't see any problem with staff at Buster's home appearing to be his friend. That's how he sees them - they offer to take him fishing and accompany him on long bus rides. Why wouldn't he think they're his friends? I don't think I like people laying down the law as tho' the way C, Buster or any other disabled person should be treated is exactly the same as how all other people with disabilities should be treated. Everyone's different, and while I can see that this is kind of a basic 'bill of rights' it still fills me with unease. And it makes people feel extra bad when they get it wrong!

Maybe I'm just old-fashioned but I think 'a kind and steady heart', as Babe would say, goes a long way towards making most people good carers, whether they know all the theory about human rights and treating people with dignity or not.
Just my opinion; I know lots of people won't agree.

Holly said...

thank you as always for sharing your stories especially about school placement problems, I'm so glad that you have found a better school where you can and C, hopefully, found peace and happiness. My daughter is happy at her school, so I know--next to what i already see and "feel" is the right choice for her. And I understand your sadness too, it's never easy watching our kids exhibit stress, my son is going through quite a bit of stimming himself right now over going into high school...so much anxiety coming to the surface, I'm trying to give him a great summer!

Good Luck, and take care!

buffalodick said...

What a lifetime of challenges you have had.. I only wish you personally find someone who loves you as much as you love your son.. You deserve a little attention, I think... Lord knows you have earned it.

jazzygal said...

Hi Casdoc.....isn't it amazing when the professionals actually stop and listen to the parent?? When they actually accept that THEY can learn from us??

It must feel truly wonderful that yo can have some input to your child's placement. I really hope it works out for you both. Xx Jazzy

Anonymous said...

Lots of people tap their fingers, doodle or jiggle their legs when they're anxious. Most of us, however, don't bang our heads or bite people when we're feeling a bit stressed out.
I used to teach autistic kids and I saw them do both. One of my students attacked a three-year-old boy because he wanted the lollipop the little kid was sucking on. One second he was standing next to his PCA and the next he was scratching the little boy's face and grabbing at the lollipop, all while roaring at the top of his lungs. That poor kid is probably still having nightmares (the toddler, not the 300-pound teenager who just hAD to have the lollipop and who knew how to sign but didn't bother to ask nicely for one.)
That's one of the problems. Many parents of autistic people defend their children at all costs, turning a blind eye to dangerous behavior that frightens and injures innocent bystanders. Some call it "challenging" behavior. I prefer to call a spade a spade.
The sad thing is, the really extreme cases have had their brains scrambled through no fault of their own. My heart goes out to them but I'm a realist and not a bit "politically correct" in my choice of phraseology. I'm just so goddamn glad that all three of my children escaped this awful curse.

Anonymous said...

Hey CASDOK, if you so embrace Neurodiversity and think autism is such a beautiful thing, why do you keep tossing your son into abusive group homes? Why don't you take care of him yourself? I mean, since you think his autism is so beautiful and all why would you feel the need to hand him off to others? Hypocrite.

The Green Stone Woman said...

Hi Casdok, there's an award for you over at my place, please come and get it.

Mama Zen said...

The new place sounds promising. The level of involvement that they are encouraging is a good sign.

Goldie said...

hey stranger... I am glad to see that you have found a new home for c, but sad that you both will have to struggle through another change. Praying for you!!

Hippy Mama said...

@ anon some people talk complete crap and have no compassion.

I'm so glad that I have escaped this curse!!!


Amanda - Mother of 4 - 3 of which do have Autism, A.S, Dyspraxia, Dyslexia and ADHD and I am very proud of all of them.

Barrie said...

Thinking of you both. I hope this place is the perfect answer xo

Seamus said...

I'm so glad this new home is welcoming your input. Hoping that all will go smoothly with this move.

LceeL said...

I hope things go well for C in the new place.

For him - and for you.

Dave Coulter said...

Hopefully the new home will be more like home. It has to be nerve-wracking....

Merely Me said...

My thoughts are with you and C.

You and your son have been through so very much. I wish you both the best on this journey.

Julie L. said...

My fingers will be crossed for you and C in hopes that the big transtiion will go well. the new home seems so promising. Hugs. --jml.

Tanya @ TeenAutism said...

Thinking of you and C always and hoping that your stress is eased soon. Sending love and hugs!

Mama Deb said...

Not sure if C has moved yet, but hope that if he did it went better than expected. I so appreciate reading your words and having at least a little light shed on what my own future may entail. Thank you and good luck with this transition. I hope you don't have to move him again.

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Jade said...

Hi my friend! Sooo sorry I haven't been around as much as I used to be. I'm having g a tough time balancng life right now. This week must be mobi g week for C. I pray for you both that the transitio. Is smooth. I know very situation is going to have it's challanges but hopefully the challanges that fo with this new residence are few.

Sending you love and a tight hug on the breeze.

Honeysuckle said...

Wonder which actual day the move is? Must be about now? I do hope it goes better than you're expecting and that C comes to love his new home. Thinking of you both.

Casdok said...

C moved on tuesday. Its hard but much more positive than last time. So things are looking up :)

rhemashope said...

Thinking of you. Praying this home will bring peace and rest to both C and you.

Honeysuckle said...

That's such good news.

CC said...

HUGS!!!!!!

motherx said...

Good news but so depressing what you have had to go through. Hugs, xxxx