Monday, 28 March 2011


In today’s fast moving and aspirational society, social care needs to keep up. Its evolving slowly - there’s a cultural shift towards personalization and our expectations are higher than ever. I believe personalisation can be achieved in small group home settings for those who are more vulnerable or would be too isolated in independent living. With motivated staff - flexibility and creative thinking of effective and sustainable ways to meet peoples needs and have fun, so as not to stifle life choices just because of a system. NT's take risks everyday!
Right to Control a 2 year pilot scheme has been launched which builds on personalisation. I have had some training in this so will be interesting to see how it unfolds as the government want to work towards disability equality by 2025.
Basic human needs are the same for everyone, the way we satisfy them is different as each human lived experience is unique. There are various models of thought on this, I like Maslow’s triangle (without the hierarchy) C relies on others to provide and meet these human needs for his well being to keep his anxiety arousal low so C doesn’t drop too many spoons.

Maslow says there are 5 groups of needs to be met to achieve personal growth and maintain a satisfying life - in simple terms.. 

Air. Food. Water. Sleep. Bodily comforts. Activity – sensory and motor stimulation includes physical exercise, and rest. Sensory diet

To feel safe. Protected from harm (from self and others. Sensory etc). Laws. Stability. Structure. Routine. Sanctuary in own personal space. Financial security.

Love. Affection. Belonging. Acceptance and understanding. Family. Staff. House mates. Sense of community. Member of a group. Opportunity.

Dignity. Value. Respect. Freedom. Choice. Control. Empowerment. Competent. Confidence. Achievement. Learning. Meaningful activities - Active support.

Self Evaluating
The best life you can have.
Reaching your full potential.
Making the most of your unique abilities.
At peace with yourself.

The thought is we all have these same groups = I've just given interpretations of some of the needs I found on different Maslow triangles.
We are motivated by different needs at different times in our lives. I am also mindful of different climates, cultures and economic developments around the world.

C has to solely rely on other people for his most basic of  needs for achieving and maintaining harmony - the result of his social and physical environment can unbalance his needs being met and makes C self-injure.  

So when you have physically rebuilt some of C’s environment, changed everything you can, tried to rule out health needs, looked at communication profiles and if there is nothing else you can do maybe it is time to explore the option of medication so C has now been referred to see a psychiatrist.  
C is depending on us to meet his needs to keep him safe and give him the best life he can have. 


Dan.P said...

Thank you Casdok for this you always manage to put things into simple terms in ways i havent thought of.
Hope all goes well with C.

jazzygal said...

Very interesting concept and I do hope success can be achieved when implemented. I do hope things go well for C too.

xx Jazzy

Happy Elf Mom (Christine) said...

I hope they are able to help C feel more comfortable at home. I hear there is rioting over budget cuts and hope you are all ok and well-cared for.

Anonymous said...

Kudos to you and staff for not going straight down this road.

Why do we have to wait so long for disability equality??

No Guile said...

Interesting. we just had a discussion about maslows theory in class and I didn't even think about depending on other people to meet your needs.

Anonymous said...

I'm hoping this will help. I used to work with mentally handicapped people, warehouse in a huge complex, many years ago. It was awful the people were drugged into complacency. It's not like that now. Katie is on anti-psychotics but a low dose and it helps to smooth over her aggression and anxiety. It still pops up from time to time but much less often and I'm getting better at helping her to name her emotions, instead of telling her to stop feeling them, like my mum did.

Take care.

Julie L. said...

Great Post!!! Very insightful. I just hope the physchiatrist you have been referred to has more experience with autism than my son's had. We got a perscription which is helping, but the doc doesn't seem to know how to interact with my son without triggering behaviors. Argh. My guy has interacted pretty well with most doctors, just not his phychiatrist, which I find extremely ironic.

Ron said...

Wonderful post, dear Casdok!

You always bring such important topics to light.

Reading Maslow's five groups of needs, this one really jumped out at me....

Dignity. Value. Respect. Freedom. Choice. Control. Empowerment. Competent. Confidence. Achievement. Learning. Meaningful activities - Active support."


Hope all goes well for C.

X to you and C!

Deborah Carr (Debs) said...

I always learn so much from your blog, thank you.

I hope everything goes well for C. x

Joeymom said...

The leap to medication is always a difficult one to bridge. We had to make the hard decision this past fall, and we decided medication was the only route left. IT has helped us, but it is definitely not a silver bullet.

Looking for Blue Sky said...

I have a bit of each of these in my two: It looks as though Smiley will always need others to meet all her needs, while who knows about aspie boy? He may need medication one day if I can't teach him how to stay calm. I really hope the C gets all the help he needs xx

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kathleen said...

Medication has become a four letter word in some ways..I remember having to face that decision. I too was in a similar sort of situation with one of my children. Nothing we could do (i.e. changing his environment, looking at his health..teeth? ears? pain?) seemed to help him. I remember feeling so powerless-this was my child! I am supposed to make his life..I don't know-smooth? calm? I felt like I was somehow a failure because we decided to look at meds. That was four years ago. I don't regret it. They give my son peace. (not in a drugged stupor way!) calm..

Usethebrains Godgiveyou said...

We gave our son ritalin to go to school. Now that we homeschool, he doesn't take it. BUT, I continue to take an anti-depressant for anxiety. It took years to find the right one, but I am definitely not against medication! I am so much happier now, and actually more secure. I take a very low dose. I knew immediately (within 2 weeks) that it was the right medication, although I had taken others in the past. Please, trust your feeling about the medication C is put on. Some are definitely wicked for one and great for another. You, not the doctor, will know if it is right because C will let you know.

We are all fearfully and wonderfully made, and very complex beings.

Pat said...

Hi Casdok. My first venture into blog land. I saw your piece in the Challenging Behaviour Foundation newsletter and have just spent over an hour reading your blog. Fasinating stuff. My son is a lot younger than yours so it is good to know I am not alone and you are so positive even when you must be hurting. You have given me more insight and understanding. I will draw strength from this.
Thank you Pat

Lizbeth said...

It's a hard decision to make. It amazes me how one little thing can upset the apple cart and rock their world and how they in turn process (or not process) it. It's a struggle but I know you'll do what you think is best.

Usethebrains Godgiveyou said...

I've come back. I love this post. It is a loving parent who seeks all other measures before drugs.

C could have been born with a hyper-sensitive system, and the world may seem a constant threat to him. Making him more comfortable in this world is a loving thing to do. Things may change later on and he may not need it. Or, he may need it the rest of his life. You are taking a step to make his world less prickly. I wish you so much luck, and hope you get it right for him and give him a respite from his frazzled nerves.

Anonymous said...

r.b. is so right. As a social worker I have seen so many parents put their kids on meds to meet their own stress rather than the child. I am impressed reading your blog C wasn’t already on them. Well done you for reminding people of basic human needs. Which is why we need equality acts as people forget.
From the CBR mag

Sammy said...

The Right to control sounds interesting.
CBF :)

Parent said...

Not just the Right to Control that are trailblazers x

Mum2teen said...

Ive wondered about independant living but as my son also dosnt communicate i fear what would go on. I think if you get a good mix a small group works really well.
Good luck with the meds you are right to look at everything else first.

nitebyrd said...

May all go well for both you and C. Everyone does deserve the best life possible.

secret agent woman said...

I hope the medication consult is helpful.

Happy mom said...

I tried independent living for my daughter. It was too much hard work for me and I would end up having to cover holidays and sick as well as all the nightmare paperwork and money restraints. Which was not good for my daughter.

She is now in a small group home with a good client and staff mix. The attitude is so important and they welcome my input. The service provider is transparentSo yes personalization can be achieved.

Lisa said...

I have just come across your blog via the challenging behaviour foundation newsletter and I just have to say WOW. You and your son could be me and my son.It was like reading my diary only i dont have one. I can identify with everything you say it is uncanny . X

Nancie said...

Thank God that C has you. You are such a loving and caring mother. Keeping you and C in prayers. Take care!

Anonymous said...

I wanted to stop by and wish you a very happy Mother’s day and congratulate you on a superb blog. It’s more than a blog it’s a testament to a mother who ‘gets it’. Who wants to work together as you rightly should. Having a child like C is not a train wreck but just is. And you are getting on with dignity and love. Your pages here should be guidance to group homes.
I wish you both all the best.

PA said...

I came over from Cathy’s World Autism Awareness Day blog. She said your blog is so very powerful. She is right. This is the way to raise awareness by walking the walk not doing it for charity, not lighting your house blue. But educating others in neurodiversity. We are all human and should treat each other as such. Autism isn’t from another planet or even Holland. It’s here, in all of us.
Happy Mother’s day Cas. Keep up the good work. Education/communication is the key.

Trish said...

Thanks for another great post. This is especially timely for me as we are being asked to consider medication for our son with regard to anxiety and this seems likes such a good way to evaluate what else we may need to address first.

Bless you and C!

Yuji said...

Interesting to think of Maslow's triangles from C's perspective.

We've thought about medication but have not pursued it yet. I'll be interested to read about your decision-making process and experiences.

Socio Uno said...

Love the heading and content.
Paulene x

Natalia said...

Just thought you should know, in case you weren't aware, your Faces of Autism blog was selected to be amongst the "50 Blogs You Should Bookmark for Autism Awareness Month" You came in right at #50 =)

Natalia said...

Oops... forgot to put in the link! lol

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