About Us
My little Pwdin* is four years old and not really very little. He was diagnosed with severe autism and learning disability at aged two and four months. Despite it being very clear we had an adorable autist on our hands, the professionals wanted to take their time over formally diagnosing at such a young age (despite referring to the Pwd as autistic for months before). It was clear as soon as I met the little monster he was different – he had no suckle reflex and could not/would not open his eyes for any length of time for weeks. He was first referred to child health at ten months because he could not sit unsupported – that’s what got the ball rolling.
The diagnosis of autism did not, therefore, come as a surprise. It did not shatter our world, destroy our dreams nor leave us grieving, wailing or gnashing our teeth. It was a blessed relief and we started networking with disability groups and trying to access services to get our boy whatever he might need. There are parents for whom a diagnosis of autism does come as a shock but we had a long time to come to terms with who our child is and we love the very bones of the boy. Look at him! Who couldn’t love a face like that?
It’s just the three of us here, in Wales: Pwdin, hubby (my Irishman) and I. Hubby works with disabled students in further education and I am a freelance writer. Most of this blog is written by me with guest posts clearly marked. I love people to make comments and discuss posts and pages but I do ask that you observe my comments policy.
Me
If you’re looking for an unbiased, sarcasm free blog you’re in the wrong place. I do like a good rant. My Pwdin is fully vaccinated and, as long as I have anything to do with it, always will be as are the rest of our family including our pets (well, not the fish). Pwdin goes to an incredible special school and his being vaccinated significantly reduces the risk of him catching a vaccine preventable disease and helps protect school mates who cannot be vaccinated for legitimate medical reasons.
*Pwdin is Welsh for pudding in case you couldn’t guess
Cwtch is also a word that you’ll come across a lot in this blog because my Pwd is a very cwtchy boy. It means a snuggly cuddle.
…and the flamingos are not symbolic or anything. I just absolutely love flamingos.
15 Comments on “About Us”
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Thank you for an informative and inspring article. When canvassing in the Cardiff ward of Fairwater and Pentrebane, I was amazed at the number of parents, mostly mothers, struggling not just with autism but a complex variety of issues and conditions from ADHD to Autism. Disputes with education departments and social services also dog such families especially those opting for home education. A quarter of the pupils at a school I govern are SEN so it’s obvious my ward needs networks, support and a safe place where these families can meet regularly so anything I can do to help establish or improve such facilities please drop me a line. I am also Chair of Riverside and the double-whammy in 2013 removes both legal aid AND virtually all the specialist welfare advice from the city. I will have to campaign and lobby like hell in the next twelve months otherwise families will end up on the streets.
Best wishes to you and the team and congrats on a most excellent website!
Cllr Paul Mitchell
You can rely on my support in a non-partisan capacity. Just give me a yell!
Our son is 42 yrs. of age. He has physical dieficultifs with cerebral palsy; leanring disabilities; autism [not diagnosed until 2007]; and in addition, a complex and specific language (not speech!) impairment.He lives independently in his own bungalow, about two minutes from us; where he has been for the last six years, following a period in residential care. He is supported by carers going in; but the way in which that package has evolved has been NOT through a proper assessment based on detailed knowledge of his diffiuclties, but rather on pot luck as to what might work, and what might not. Essentially the package was instigated on a domicilliary care’ basis only; on tthe mistaken basis that he had capacity to handle his own affairs’; which he cannot. As a result he has suffered a catalogue of abuse, including a serious rape [not by staff]; and a physical attack by untrained (in autism and communciation) staff. The authorities have consistently refused to recognise the seriousness of his difficultes; because surprise, surprise! he comes over as being far more able than he is. This consitutes the most serious category of abuse that is, the abuse of power, of the insiduously institutionalised kind. We ask therefore: 1 What is the commitment to ensuring properly conducted Community Care Assessments through specialisms in autism?. 2 What is the commitment to the promotion of the concept of Specific Impairments in Language’? 3 What is the commitment to the provision of Autism Specific Services [as opposed to domicilliary care in the hope it will work]? And 4 What is the commitment to taking sanctions against those authorities who continue to bully people into accepting second-class services?Thank you.
Thank you for your comment. I’m sorry it was in my spam filter for so long.
I hope that when Pwdin grows up he will have at least some independence. Your son seems to be doing well in spite of the lack of services. I worry that cuts will strip even the little that exists at the moment.
As you can see from the previous comment on this thread I am in close contact with local government officials. I am doing all I can to emphasise the need for care of our children beyond their school years. Care, in actual fact, for families.
Hearing that your son has his own bungalow gives me hope for my Pwdin’s future.
I wish the two of you nothing but the best for the years ahead
xx
I think that your letter to the Department of Health stating that an organisation supporting the view that many cases of autism are in fact caused by Lyme was involved in the Lyme rally at the DoH on May 9th is ridiculous, and the comments you have made about the therapies used to cure Lyme are equally nonsensical.
I was at that rally and involved in the organisation process; no such organisation as the one you mention was involved in organising it, and no representatives of it were there.
You appear to have a major issue with the idea that autism could be caused by a bacterial infection, but I am not clear why you feel that way. Surely you should welcome the possibility that there may perhaps be a very real and identifiable medical cause for your son’s illness, and a wide range of well-researched and safe therapies which have helped many people.
What is wacky about that? It seems to me that you are the wacky one here!
First of all, wouldn’t your comment better suit the page relating to the, yes, ridiculous notion that Lyme disease causes autism?
I found out about the rally via the Lyme Induced Autism Foundation’s posting on Facebook pages (first I’d ever heard of them) encouraging people to “join our rally” (emphasis mine). I shall endeavour to locate at least one example of those posts. If, as you state, they had no involvement in the organisation of the rally then they have misrepresented themselves in relation to the event.
The prolonged use of antibiotics can have serious consequences and there is ample evidence of this in the medical literature. I suggest a quick search of PubMed just as a kick off. These consequences include diarrhea and yeast over growth. We all know that the inappropriate prescription of antibiotics has led to increased resistance of bacteria to these medications them putting us at greater risk of infection by them with diminishing recourse to treatment.
I do, indeed, have “a major issue with the idea that autism could be caused by a bacterial infection.” In fact, that’s massively understating it. I feel that way because the idea (and that’s all it really is) lacks plausibility and there have been no credible studies to show that any post natal event increased the risk of- or leads to – autism. Acquiring Lyme disease counts as a post natal event. Moreover, the quackery being touted to rid autists of these pathogens extends to giving them bleach enemas and bleach to drink. I am, of course, referring to MMS. If you want to discuss that, please comment on post relating directly to that poison or those comments will not make it through moderation.
You state that I “should welcome the possibility that there may perhaps be a very real and identifiable medical cause for your son’s illness.” My son is not ill. My son is autistic.
PS
Pathetic attempt at an ad hominem at the end there and I do love a well crafted ad hominem.
I was surprised at the ‘disease argument’ clouding an excellent thread. The net is awhirl with a spectrum of arguments and theories – some well argued and some quite unhelpful and some mendacious which do little except muddy the waters when dealing with the day to day realities of autism so please don’t descend into sarcasm and insults as this does not enhance debate or understanding.
Councillors such as myself, except for the few who have had personal or professional experience of the spectrum of autism and other challenging conditions, know little about your experiences so send a link and/or an e-mail to democratic services and ask them to distribute it to all councillors. The more champions you find, the more council services and through them, WAG policies can be tailored to reflect the realities of caring for relatives with challenging conditions in the city of Cardiff.
As a published author, I can also help autismum members should they wish to put their experiences into a book – often a useful lobbying tool – Eduardo’s story for example would be a powerful asset in bringing such gross abuses of personal and corporate power into the public spotlight.
In my ward, I would like to see more networking and building on excellent SEN and
mainstream education support work done by many schools and other agencies that we need to recognise, understand and support. I will do my best over the next five years to improve facilities and networking in the ward but at the moment I am buried with training and case-work. I will still take breaks to catch up with threads like these as they are important to the welfare of many Cardiff citizens.
Next year, we see the massive changes to benefits and welfare systems, cuts to council tax benefits, removal of legal aid (except for extreme domestic violence situations) and the destruction of the remaining specialist advice services. I am lobbying WAG and raising the issue whenever I can to protect all our third sector advice providers such as the Law Centre, Speakeasy, Riverside Advice and others so that least a threadbare safety net will survive. If we fail, councillor surgeries will quickly oveflow with angry, desperate people that we will have no training, time or resources to help. Summer 2013 could be a disaster for many thousands of the most vulnerable in the city and we could be powerless to prevent it.
Good luck with all your battles to come!
Cllr Paul Mitchell – writing in a personal capacity
i am a adult with asperger syndrome.i would like too get your blog HAVING A LOT
TROUBLE… do you do a newsletter..ask for stories
I don’t have a newsletter but I do have a Facebook page (the link is at the bottom of the site) and I do occasionally have guest bloggers. Feel free to PM me
Your son is adorable! Thank you for being such a wonderful advocate for him and for other people with disabilities. I wish the world had more mums like you!
Thank you so much. You’re making me blush xx
I have seen you make a lot of informed, insightful comments on a few medical blogs (such as Respectful Insolence and Shot of Prevention) and I would just like to say – YOU ROCK. I think you, and your Pwdin, are an inspiration.
Aw thank you. The pwd really is a star!
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I just nominated you for the Liebster Award! http://simpleijustdo.com/2013/03/12/liebster-award-thank-you/