Friday, 20 November 2009

Being complacent

An easy trap to fall in and we all do it.
When our children have high levels of support and thrive staff can become complacent (and of course funding issues can play a part) support is reduced and then people wonder why they are not coping so well. Crystal Jigsaw’s daughter is doing well with support as is my 4 year old nephew with his early intervention; they are threatening to reduce both their hours.

Even as parents we do it. C recently gave me a sharp reminder of this. I’ve been taking him on the London Eye for a while now which he loves. A couple of months ago on our way to the Eye because of engineering works our journey had to change and I didn’t heed the early warning behaviour signs and use any proactive strategies, all I could do was react when it was too late, but C was too far gone and there was nothing I could do. I’m sorry C.
Green – calm and relaxed
Amber – anxious

Red – incident
Blue – calm down but may reignit


We have been back on the Eye with the moral support of a blog friend – thank you Mother X and boys.

Staff can also become complacent about people’s behaviour. In Cs case I’ve heard staff say C self injures because that’s what he does. They don’t expect anything else. Not - why don’t we look at why he’s doing it and address it. Thankfully Cs new home are not complacent about this and have realised sometimes he actually causes himself pain (after the London Eye incident he had concussion for a week) and through using a version of the Abbey Pain scale. Which can be found at Dis Dat (as C can’t use pain pictures) they were able to monitor how he was feeling.

The CQC are implementing new regulations next year across all adult health and social care services. They have done a huge public consultation and are still consulting with various groups – carers being one of them. From this - services are to be more (the ‘in’ words are!) transparent and accountable to everyone, carers will be more involved (if they want to be) even when their person leaves home. I have therefore approached C’s service provider and suggested they start a relatives group to benefit their residents and staff and ensure good practice and hopefully no one will fall into the complacency trap. They have readily agreed.

Have you any stories of complacency and/or how to avoid it?

59 comments:

Crystal Jigsaw said...

I've kept on top of it to be honest, not telling staff how to do their job as that would be incredibly patronising of me, but just letting them know that I'm Amy's advocate, and no matter what happens with support issues, I will always fight 100% to get what she needs. Perhaps what I feel she needs, but this again, is my decision.

It is so important for the carer to be totally included in the care and complacency to be addressed at all levels.

Thanks for posting this information, as always a useful source. Love to you and C,
CJ xx

Sandi McBride said...

You know reading this one would think what a fantastic support system is out there...but like in any thing else there is always room for improvement...and status quo thinking has no place in the lives of our children. We should all strive for better!
Sandi

menopausaloldbag (MOB) said...

Nope I am not in your's or Crystal's situation so I have nothing to offer. Just glad to see you are still as active as ever making your voice heard - you are a dynamo!

I hope C's care remains consistently high for both your sakes. I hope you are less stressed now that his new home is streets ahead of the last place. And I hope that you are finding some time for yourself too. X

Mrs. C said...

I don't know that "complacent" is the word, though... more that things are working and you concentrate on other things?

Today Elf banged his head very hard because he missed some math problems. He is upset. I feel it would be COUNTERPRODUCTIVE to be over-helpful when *most* of the time that support is not needed... but being aware of warning signs... that blue you are suggesting, and then starting to step in there. Or before if there is an ongoing problem. It is just that I thought Elf was "done" with that. I guess he wasn't.

Woodjie is more dependent on the people around me and I am not sure that it is possible to ever get complacent... more that... we concentrate on the most problematic area at the time (functionally... yk) and then that might change.

Hugs to you and C. I had been meaning to write to see how things were but as you know, we are dealing with stuff here too. Woodjie will go to preschool soon also. Sad/happy, that. It is a good place, but he is getting older.

Casdok said...

Mrs C - the term is used here alot especialy with reference to staff and challenging behaviour :(
Hugs to you too.

Mrs. C said...

Casdok, "complacent," at least here, has a "lazy" laid-back sort of connotation. Is this an English-y thing or a new medical sort of term I missed?? I had *never* heard of a parent being called complacent. And you have never, never struck me that way.

Casdok said...

Your right and im not usualy! However i was being laid back at the time as C had been doing so well, the example i gave C's behaviour escalated so fast so i didnt have time to read the signs and looking back they were there. So maybe not a very good example, but i just wanted to illustrate the point.

Robert said...

Excellent stuff Casdok, transparency and collaboration! As for stories of complacency, too many to mention unfortunately ...

Jayne said...

Hmph!
Yep, when Feral Beast was starting to manage in the classroom his integration aide (who was funded to look after FB and no one else) started looking after other kids who didn't qualify for funding, justifying it with "he's able to do it on his own" and when FB started to meltdown for want of assistance he was shoved into a corner "to learn to behave in a social manner" which I never knew about.
I so want to go down to that school and show that since I started homeschooling my son he has gone ahead in leaps and bounds and is now finishing his 3rd university unit and about to begin his 4th and 5th this coming term. He's almost 13.

Akelamalu said...

I'm so sorry to hear about the incident that left C with concussion.

It must be difficult to read the signs sometimes but that shouldn't equate to complacency should it.

bobbie said...

I am not in your position either, but complacency is something to beware of in all aspects of life. It's just too easy to fall into.

I'm happy to hear that C's caregivers are being so understanding. You do such a marvelous job with him and for him.

Maggie May said...

That must have been awful for you to actually witness C injuring himself like that to the point of concussion.
It would be good if they could find out why. I suppose it is different reasons on different occasions & he was obviously really upset at going a different way.

I think that it is awful that the authorities are trying to take away hours from Crystal's daughter and your nephew.
My daughter has still not got Rick statemented though it looks as though he will be getting extra help eventually.
All the hoops you have to jump through to get anything is just amazing & exhausting. It is bad enough for Mums to cope without all this added agro.

Nuts in May

Hammie said...

Been there, done that, got the Bolting, refusing to move or self harming t-shirt. Because I relaxed and got complacent.
I'm so glad to hear how accomodating the new place is for C- and how they are not afraid to listen to you.

xx

kathleen said...

YES!! I have caught myself at times becoming complacent. Especially when we are going through a smooth patch..It is like I momentarily lose sight of triggers-(don't know if that makes sense)until we have a freakout-or a breakdown. Those are the times I just want to kick myself! :)
At school-I have to remain on top of services for my boys. If my presence is felt-things go swimingly. If I should happen to get caught up in other aspects of life..they tend to forget to do certain things..like filling out the daily journal.
I think that the idea of a relative group is wonderful. :)

StatMama said...

I work very closely with my children, learning what types of interventions are out there and implementing as much as I can of what I think is applicable. I don't do it in a therapeutic setting, or make it a point of saying 'it's therapy time'. Be it speech, OT, PT, whatever. Then I get to these evaluations with, most notably, my son. I hear things like from OT/PT therapists like, "He doesn't seem very autistic." People do not grasp that, in order for him to cope so well, it requires us to basically exist as a constant therapeutic environment. I suspect they see a lot of parents who are like, "OMG! Autism!" and just throw their hands up helplessly. I don't think, outside of the blogging community, that there are a huge number of highly involved parents. Just my take. How I deal with this? I write everything down, to make sure I make my points clearly when it comes IEP time.

Tanya @ TeenAutism said...

So sorry about C's concussion. But what a great idea you had about starting a relatives group for the staff - that sounds like it will benefit many. I myself am trying not to become complacent with Nigel as he has been doing well lately (knock wood!). I have to make sure that his teachers do not become complacent also - because his cognitive skills are good, some of them tend to believe that he does not need as much assistance. Perhaps someday, but not yet!

deb said...

I took Katie to a behavioral therapist today. This woman uses animals to work with people. Katie chose to work with a donkey named Moonshine. They were a good match, both very stubborn.

But the therapist, she was lovely. She understood Katie and had positive things to say about Katie. She saw Katie's intelligence and humor and how well Katie copes with the world around her. Made me cry and I thanked her because she is the first person who has really seen Katie.

Club 166 said...

Don't be too hard on yourself. It's truly impossible for any one person to be "on" every minute of every day.

Glad to hear that C's new placement are not complacent, and are being proactive.

Joe

DJ Kirkby said...

N3S's school are saying he is doing so well that he may not need his 1:1 support that we fought for for years and is precisily the reason why he is doing so well. Oh it makes me so cross. Lovely to see that C's new school continues to be fabulous. I have a great book to give away on my Chez Aspie blog from Sunday so please stop by and join in the fun. x

Paulene Angela said...

My easing up period is far from a feeling of complacency, rather a recharging of my mind and soul and working on a new strategic plan to return to the battlefield of liaising with a staff head who is very complacent with her long service role.

Debs said...

I think sometimes we relax a bit - and probably need to - rather than getting complacent.

Kelley @ magnetoboldtoo said...

Oh God how I hear you.

With everything that has happened this year I haven't been as pro-active or observant as I was and of course ALL of that was left to me but family and school and now Boo is a mess.

We have the education department coming to observe him tomorrow. I am hoping for all our sakes he has a really bad day so we can get SOME support...

*sigh*

Why does it have to be so hard babe?

Casdok said...

I dont know. It can be so wearing trying to keep on top of it - and we shouldnt have too.
Hope it works out for Boo.

Anonymous said...

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Cheryl said...

This is so interesting to me, on so many levels. I love the new regulations that they are trying to put into place because when working with children, you can never get complacent. There are signs, that we as mothers know, that the staff has to be able to tune into as well. I just had this conversation with Melanie's Social Worker, She may seem like she is doing great, but I noticed the subtle things, that can quickly lead to A,B and C. They called me later to thank me, because sure enough, I was right and they were able to redirect her, understand why and it all ended up ok. She is in the RTC for a reason and as sweet and cooperative as she has been acting, she has triggers and signs that I call red flags, that i plead with the staff not to ignore because they can get out of control very fast. So far so good. I'm glad C has found such an amazing place.
XXXXXXX

JoyMama said...

So hard to stay so hyper-alert, so continuously. I think the complacency you describe (and I recognize it in myself too) is at an entirely different level from how the term is often used!

I'm sorry that you and C had such an overwhelming experience, and hope that he has recovered well.

Thank you for the Abbey Pain Scale link. New to me, and potentially very useful.

Rebel Mother said...

You are quite right about becoming complacent. I find if everything is jogging along nicely, I become complacent. Then Olly throws a tantrum and its because I've 'taken my eye of the ball' for a moment and then there's hell to pay. I view it as a stark reminder that I cannot forget his triggers....even for a second.

I hope C is feeling better now.

Love RMxx

Beth said...

Haven’t had an opportunity to be complacent for the past little while!
So good to hear that those in charge at C’s new home really listen to you.

secret agent woman said...

I guess awareness is the key, huh?

Accidental Expert said...

Complacency is a huge problem. As soon as my son does well, hours are cut, services pulled back, etc.

Then when things blow up he is labeled as defiant. Go figure.

Trish said...

Last school year the teacher was not really interested in learning anything about Michael and didn't really believe in autism, and the hardest part was that the other staff wouldn't push her to get with the program.

So in the spring I made myself very clear that we needed to go a different direction. This year has been several weeks of staying on top of everyone and everything until we got some good plans in place. At the moment, I have relaxed a bit but wouldn't say I'm complacent. The staff seems to be working well together with Michael and is very aware that I will be addressing anything that comes up immediately.

It's a relief to be able to have positive interactions with the teachers for once and feel that they understand the big picture. I know it might now always be this way but I'll enjoy it while I can!

starrlife said...

Read this a bit back but it got me thinking a bit too! It is one of the biggies that we, as parents of "special needs" kids have to maintain that level of vigilance full time. I also go through that at work where the Dr's seem to believe that if the clients meds are working well it's time to reduce them? And then they are symptomatic again- and the lesson seems never learned.... hmmmmm. The reality is that our lives are full of moments of "complacency", letting our guard down, that have no consequence of any consequence but it's easy to miss them when something bad happens. I'm so sorry that you had that experience with C.- that's traumatic. You do such a great job being a Mom. Hugs and good cheer sent your way. Glad to hear that his new home is more in sync with you and open to suggestions!

Rue's Mum said...

Hi There. I just wanted to say that I am finding your blog very informative. Much of what you say rings true with my own daughter. She is twelve years old and I had to plan EVERYTHING. She hates sudden changes.
It is so nice to be able to connect with other people that are living with autism!

jazzygal said...

Oh yes Casdok....definitely get complacent here too! In fact I blogged ("Just when you thought it was safe....") about how we forget when things are going really well and then the A word comes to bite u on the bum to remind you!!

Talking about services being cut...I better go make that phone call NOW (i was getting complacent and forgetting to make it!!)

I hope C is OK now. xx Jazzy

Get Off My Lawn! said...

You can't be too hard on yourself for not heeding the early warning signs. It happens to the most skilled and experienced care givers and professionals. Sometimes it feels like it happens to me daily. The difference between the trustworthy and the not-trustworthy is the capacity for reflection and modification of practice as work with an individual progresses. Hope C is doing well. Glad o hear he has good people around him.

Suburbia said...

I work in a school, and sometimes support SEN children, some of whom have dyslexic traits. When I see how well an intervention works,it makes me really cross when they decide the child has done so well that they can release them from the programme. This inevitable means a slow decline back down again. Always such a shame, and no one ever seems to learn but then that's often to do with funding, same old story. (I am beginning to rant!)

Glad you have been back to the Eye successfully :)

lime said...

i'm just so glad this new staff take your concerns seriously and work with you to avoid complacency!

Rachel said...

Casdok, if it's any help, I get complacent with myself as well. (I'm autistic.) When I'm having a good day, I'll think, "Great, I'll break my routine, I'll do A, B, and C, it won't be hard, anyone can do it" and then I get sick or melt down or both. The difficulty is that, despite the mainstream wisdom to the contrary, we have to sweat (what others consider) the small stuff, because really, in the life of an autistic person, there is no small stuff. For me, the world is a very intense place. It's a gift, but a difficult one to manage.

Glad that C is recovering and in such good circumstances. And glad that you have the support to get back on the Eye!

Mistress B said...

It's so important to be always vigilant, but sometimes so hard to do. A timely reminder Casdock.

Marla said...

Advocating is most important and most exhausting. I just now have services for M so we will see what struggles come up.

Anonymous said...

Wow i just came across your blog and absolutely amazing! I'm around individuals with severe and profound autism, found so much love in them despite how impacted they are by autism, that I can't imagine knowing what it must like to be a parent of one, you truly are a hero.

I have a question, what is your perspective on all this chelation, stem therapy, and hyper baric chambers? I found this all rubbish in my personal opinion. I watched a family who had a 2 year old diagnosed with autism, went to costa rica to get stem cell treatment, this child is 2 years old, what are some of these parents thinking? I understand they want their child to function better, but does anybody know the risks or affects in 10 or so years from all these treatments? Scary stuff, finally good to come across a blog who tells more about acceptance and love rather then hatred and ignorance.

Casdok said...

Thank you Anon. I agree with you scary stuff. There are many more humane ways to help our children:)

Thumbelina said...

Just popping by for the first time in months! I too do not know how it feels but I am a parent, and that is hard enough without challenging behaviours.
Just wanted to add my voice to the support. You're a good parent Casdok. I have always believed that. Don't ever doubt it. And yes, complacency in social/medical services is all too common. I am glad C is more settled at this home though and sorry to hear about the concussion - you're human. Give yourself a break.

Hugs.

Kristina Hughes said...

As a parent at the beginning of this journey I'm certainly guilty of complacency from time to time - sometimes coming from a place where I can relax because things are ok and sometimes coming from a place of confusion and not knowing which is the best way forward.

Poor C, though - concussion for a week. I like those pain charts - might try those on J.

Thanks, Kristina x

Dr. Deb said...

I'd never categorize you as complacent!

Ellee Seymour said...

Even worse than complacency is indifference. There is a think dividing line, so you shouldn't take your eye off the ball.

Seamus said...

I am catching up in the sphere after a long hiatus and just had to read your previous post out loud to B. We both find it humbling and have enormous respect for anyone having to deal with such challenging circumstances.

I'm am pleased to read that the present home for C continues to be working out so well.

laughingwolf said...

merry christmas to you and yours, cas :)

Jade said...

Ahh complacency. It is something that is very dangerous in the world of autism. I've found in my work that it is my worst enemy not only for me but the parents of the children that I work with. Sooooo many times I've heard from parents "Ohhh he knows that you don't need to go over it anymore" or "He doesn't do that anymore"

I always respond with, "I know he knows it now but I want to make sure it stays with him. So in order for that happen its gotta be a normal part of life. No matter how long they've "got it nailed"

Deepest warm wishes for you and C during this holiday my friend. I think of you often and hope that you're doing well.

Ellee Seymour said...

Wishing you and C a very happy Christmas and best wishes for the New Year.

Herrad said...

Hi,
Happy Christmas.
Love,
Herrad

Paul Wynn said...

I read your other blog and your sons are very cute! I work with a person who has a form of autism.. very pleasant to be around.. keep up the good work

Ellen said...

Hi. I'm Ellen, mom to Max, a seven-year-old who has cerebral palsy due to a stroke at birth. We dealt with a maddening incident of complacency when Max was 4 years old and I told his school he was ready for a speech communication device. No, they told me, he wasn't ready. "How do you know?" I asked. "Did you try him out on a device?" No, I was told. I did some research and discovered a cerebral palsy center near me had a loaner program. I told the school, who had never heard of that. THAT was the last straw. By then, they realized I was going to pull Max out of the school and had agreed to let him try a device. But it was too late. That school was the opposite of progressive‚ it was REgressive.

Anonymous said...

I thank God every day that all three of my children are normal. I don't see how the parents of autistic children can survive. When I see them out in public the moms and dads look so old and careworn. It's terribly sad.

starrlife said...

Have a Happy New Year Casdok and son!

Ron said...

Hello Dear Casdok!

Just wanted to stop by to wish you and C a HAPPY NEW YEAR!

Wishing you both a BEAUTIFUL 2010!

{{{{ Casdok + C }}}}}

X

laughingwolf said...

hope 2010 is better for you and yours, cas :)

Anonymous said...

Your blog keeps getting better and better! Your older articles are not as good as newer ones you have a lot more creativity and originality now keep it up!

motherx said...

We were pleased to be there and had a brilliant time with you both:) Looking forward to doing it again!!