Saturday, 29 September 2007

A PhD for C?!

Isn’t Dr Greg House great!!! He comes across as having some autistic tendencies, so I relate to him!.

When C was first diagnosed, our GP struck us off his list. When I explained to another GP that’s Cs head banging could kill him, he simply said ‘wouldn’t he better off dead’


Taking C to hospital is a last resort, we have had to go several times. And trying to explain someone like C to them is difficult. They think they know autism, and they think I am being over protective. Its only when they meet him and see what he is capable of do they realise. Yes his self injurious behaviour is serious.
One hospital has changed its teaching programme because of C. Pity he had to go through an horrendous ordeal first. Even though I tried to prepare them. Dont be afraid to make complaints. It does help them!!


C and I have also been involved in quite a few PhDs. So hopefully professionals in the future will have a bit more of an understanding.
Someone made a comment on C having a vocation. I think at the moment it is Teacher!!
And I think he has earned an honorary degree!!

41 comments:

Chris H said...

I totally agree, "C" is here for a purpose, if only to teach people how to be tolerant, and have a better understanding of Autism and all it's variations. Good for him.... even if he does not realise how he is 'teaching' others!

Chris H said...

Oh, I forgot to tell you, I have a girlfiends who's wee 4 year old daughter has just been diagnosed with a form of Autism....Aspergers Syndrome .... the wee girl is fixated on animals... it has been very hard on her parents accepting her 'disability', but I try to remind them that their wee girl may one day be a highly regarded Vet for all they know! At least they have hope of a better outcome than some parents - like yourself. I admire you for all you are doing for your young man.

Casdok said...

She has a good friend in you.
If there is more of an understanding in society and acceptance, then i think parents would find a diagnosis a bit easier.

I wish them all the best. x

Elissa said...

The medical profession and society as a whole has so much to learn from our kids, and our kids have such an important role as teachers - I'm still surprised at what my son teaches me every day!
C definately deserves an honorary degree!
PS Chris H - my 5 year old son has a fixation on animals as well, we affectionately call him Lion Boy sometimes, and whether his future involves animals or not, we're sure he will be very successful at whatever he puts his mind to. Remind your girlfriend that she's not alone, and just to keep loving and believing in her daughter. xx

Crystal Jigsaw said...

I so agree. And I relate to your nightmare doctors. Not all of them, I know, but most, think they are professionals and we, the parents, are not. They think their GP's qualifications or consultant's degrees (whatever it is they achieve) make them an expert in absolutely everything. I get extremely peed off when I take Amy and get head shaking, patronising comments, "have you been on such a course" or "have you heard of such an organisation". Of course I bloody have - I have lived with this for the past five years, what do you think I've been doing, burying my head in the sand?

A bit of a soap box appearing here, sorry! But I do get so frustrated when people "in the know" try to put you down. You, I and most of the other parents out there with autistic children/adults could teach these doctors and professionals a thing or two.

Crystal xx

Cathy said...

Son 2 has also taken part in research projects. I am all for adding to the knowledge base of ASD which is out there.

I'm shocked by the reaction of the GPs...we have been lucky in that respect though a trip to GP or hospital is an ordeal, especially for me!

Chris H...there is a lady in America called Temple Grandin who has ASD and is a Professor of Animal behaviour/psychology I believe. So what you told your friend is so true!

Cx

Casdok said...

Crystal, I enjoyed your rant! Thought this topic might provoke a few!!
And well remembered Cathy!

Elissa said...

Three cheers for Crystal!

Anne Brooke said...

That's a truly terrible thing for any doctor to say - I was completely shocked when I read that. I'm still shocked.

I don't have any direct experience of this disorder - though people I know do - but I'm sending you and your family hugs. For what it's worth.

A
xxxxxxxxxxx

WesterWitch/Headmistress said...

Well I think you are both amazing.

BenefitScroungingScum said...

C reminds me of another man I was priviledged enough to know, who although not diagnosed autistic was profoundly disabled after an illness as a baby where the GP refused to visit him and he was starved of oxygen for hours. He would be about 50 now if he was still alive.
R was the most inspirational man I ever knew, like you, the way he was treated meant his mother (the friend of mine) fought so hard she changed the way all those with learning disabilities are treated, especially in the area of dental treatment. R taught everyone around him about bravery, patience, fortitude and humour just by being him. The world was a better place for having him in it, just like it is enriched for C being here.
Sadly though, or maybe its for the better that it takes personal knowledge to realise how much someone like C or R truly gives to the world. BG x

Beth said...

Have just been reading through your posts. (Thanks for dropping in at my blog.)
You are an amazing mother - with an amazing son. Bless you both.

Wade said...

Hey Casdok,

I hope you hit that "better off dead" physician in the back of his head with the Hippocratic Oath!

"First, do no harm" you jerk!

I have to work with Dr's on a daily basis and some of them really make me wonder if they should have a medical license!

Grrrrrr!!!!

On the flip side though, some of the people who I have the highest respect for happen to be doctors. Unfortunately, you and "Dr. C" happened across the really bad apple of the bunch!

Be good,

W

Merelyme said...

i cannot believe that doctor said something so horrific as that! i am just so angry for you and your son! you keep writing about your experiences. people should know what you have been through.

Philip. said...

What the doctor said is truly disgraceful!

We can only hope that meeting C, doctors in the future will have a much better understanding of Autism and, hopefully, others will not have to go through what the two of you have.

Casdok said...

I hope so to.

Holly said...

Wow. Reading your blog has really given me an understanding of the darker side of the "helping professions."

I only believed such comments belonged in books, in the past.

To be so brutal, so unfeeling.

Casdok said...

Believe ir or not, it is getting better!!
But still has a long way to go.

Jade said...

No mistake about it. Your little man definitely has a purpose. My prayers go out to the two of you. My hopes are that with the ever changing trends in information around autism, that you are able to find a Dr that can smooth things out for you. I don't know about the UK but I do know that Autism is receiving ever increasing amounts of funds for research. And I hope that that trend makes its way to your area.
Best of wishes for you and C

leon said...

I admire your strength, love and optimism

I also think house is well cool
controversially . . .
I think shrek is too!!

Withy Brook said...

It is so important that people like you publish to as wide a world as possible the awful things that are said by people who should know better. As you have proved, it is the only way to get improvements. Good luck to the two of you.

BBC said...

I'm guessing that autistic folks vary a lot, so you have to look at and try to understand each one individually. Institutions are not keen and doing that, they like to group things.

Hey, hand over all the chocolate and no one gets hurt. :-)

UN PEU LOUFOQUE said...

I admire you for you pluck adn determination. Perhaps C's vocation is to teach people in medical profession that they arent always as clever as they think thye are!!

slouching mom said...

And nobody's yet mentioned Dr. House? I love love love his character on that show.

(Not to mention that Hugh Laurie is exceedingly easy on the eyes.)

bubandpie said...

It literally made me shiver to think that a doctor said that to you.

And I'm with Slouchy - Dr. House makes me shiver too, but in a good way.

Casdok said...

And they wonder why us parents have attitude!

Marla Fauchier Baltes said...

I was shocked what the doctor said to you but then I remembered what many of the doctors and specialists had said to us about our daughter. I was often told that I was the problem too. Doctors said I did not stimulate her enough or was a paranoid parent because we adopted and did not know what we were doing. Or better yet, that I wanted attention and my daughter was really not having six seizures a day...she was actually just wanting attention! I have often thought of writing all of these "doctors" we fired and telling them of our daughter's diagnosis and what she is doing now. C is lucky to have you as a mom.

dgibbs said...

Some doctors are the most infurating people placed on this earth! I am so glad you are strong for C ;)

the witch said...

I agree - Dr House is definitely an aspie! Maybe the script writers were thinking of someone they knew, or even aspects of their own personalities. Sorry to hear your GPs were so awful. The "problem" of autism is as much caused by these prehistoric neurotypical attitudes as anything else.

Casdok said...

You have hit the nail on the proverbial head!

kitten said...

Thank you for posting on my blog. When I came here to thank you, I noticed one of your intrest was autism, then noticed you have a son with Autistic Disorder. I have a nephew that they think is Autistic. I will come back and read more because I don't know much about this. I really Like Dr. House and your blog.
Thank you!

Little Wing said...

Casdok, I think you and C both have earned an honorary degree!

Daniel, the Guy in the Desert said...

M.Ds can be so brutal sometimes. I knew a young man with Leukemia, and when he went into the last stages would visit him in the hospital. The staff seemed bitterly upset that we spoke life and encouragement to him. It was as though they wanted him to die so they could free up his bed.

Rhonda said...

I CAN'T BELIEVE SOMEONE WOULD SAY SUCH A TERRIBLE THING!
That really infuriates me!

How dare anybody say that?!

Ok I'll simmer down...

Scorpy said...

Hi...I found you at Vi's and trundled over....I'm a single Dad of two daughters, my LLs (lovely Ladies). My eldest (11) has Aspergers and everyday is a learning day...her mother tries to treat her like nothing is different and disciplines her for her idiosyncrasies and I suppose it is why we broke up. She is my light for every day :)
I'll have to stop by when I have more time (we are painting flower pots :) and have a read.

DJ Kirkby said...

Honourary degree, I like that, he sure deserves it! Amazed at your GP's reactions and comments but guess it was a long time ago as GP's (some of them) awarness is improving. We'll see what happens when I ask for a referral for assesment for me from a GP where I used to be the surgery midwife! I suspect this is going to be difficult... I agree with you about House, I said to Chopper that I think he has Aspergers, textbook behaviour really.

Bare Bones Gardener said...

I'd like to see these professionals walk for just a day in our shoes...

As parents of ASD people we see what many don't. And sadly the problem isn't just with M.D.'s and dentists, it's also with psych's, teachers, O.T.'s, receptionist's, counter staff....

the list is endless of those who show intolerance and indifference to our kids.

Elizabeth McClung said...

I think I understand the frustrations about GP's as anything outside their 10 minute zone seems to be struck off - oddly the very people who are most in need of understanding care (wasn't there some kind of Oath they take....?)

I think C has earned a degree, indeed.

Just to respond to an earlier post, my brother, when he found out his son, S., was austic went sort of ballistic/funeral grief with the "he'll never be normal" crap. I sent a letter trying to explain that S. was born entirely normal, it is simply so frustrating because everyone around him isn't as they are loud, dense, unpredicable and unable to understand him. Or rather, S. will not pine or regret who he is unless that is taught to him; which society will likely do soon enough. I'd like to think that letter helped (but then my brother would spend thousands of dollars on behavior modification to try and get S to "smile normally" for family photos - so I am guessing maybe not)

Jill said...

Since I'm a part time teacher, I had two of my students that have autism. I hate to see them trapped in their own world, and I don't know how to deal with them, because I don't know much about that. I might come more on your blog, to learn more!!

Helena said...

I love HOUSE too!!!!

Anyway, (ahem!)

It's terrible, the struggle you've had with idiot doctors. I've come against some idiots myself, trying to get help/disgnosis/treatment for my bi-polar. Isn't it amazing how they can get away with being so damn rude TO YOUR FACE????!!! I usually don't have a reply at the time, as I'm sitting there thinking, "What the? He said WHAT? WHAT?"

The NHS isn't 'National' at all, that's the problem. I lived in Kent most of my life and got no help at all. Thought that was just the way it was. Moved to North Essex a few years ago and hey presto! A decent doctor at last....

Still not much in the way of help, but at least I'm being listened to and taken seriously. Now the excuse they give is finding.....

Chopski said...

I got a 'House' box set for Fathers Day! There is an episode about a boy with Autism.