Autismum

By day: mum of an autistic tot. By night: mum of an autistic tot.

Four

This paragraph has been inserted about 6 hours after I began writing this post. People, I’m in pain.Not emotional yearning or existential angst but proper Oh my blessed stars back pain – lower back either side. I got me some drugs though (diazepam and diclofenac) so this post may veer a little so apologies in advance of my pharmaceuticals kicking in.

My Big Pwdin

It’s been a busy week with a super busy weekend to round it off. My little Pwdin turned four and, to celebrate, had my nieces (aged 9 and 14) and nephew (14 – twin of my older niece) to stay. First things first, this is for my teenage niece: I will have my revenge for that Wiggles song you put in my head. It is haunting my every waking minute. I cannot and will not forgive you.

Moving on. The Pwdin had a brilliant time. Ok, he didn’t eat any birthday cake but this year he gave it a poke. He loved his presents – a toy tablet computer, a froggy bath toy (which he took to bed) and a little tiered racing track for wooden cars that has come out as most favouritest present of the day. It’s highly doubtful that Pwdin has even the remotest concept of birthdays at all. He rarely gets invited to birthday parties and we find it impossible to explain future events to him. He lives, rather gloriously and noisily, in the now. For Pwdin having his cousins over was a great treat. Why were they sleeping over? Doesn’t matter to Pwd he was just going to have fun. My “evil” niece was in charge of cwtches and throwing him around and tickles, my younger niece had to entertain Pwd with her infamous chicken dance. My nephew, all 6ft plus of him was a climbing frame.

For Pwd’s third birthday (his 2nd we went to Bristol Zoo and on his 1st he got his MMR jab and our lives didn’t change forever)  we threw a small party at our house which doubled as a house warming do. This year that was entirely out of the question. We have no furniture in our dining room as our little monkey arranges and then scales it to dive into the kitchen. The carpets got smeared with poo, we replaced them with vinyl which got torn up so we replaced that with tiles which got broken and have gone in the bin meaning we don’t have safe and even flooring throughout most of the downstairs of the house. All the little Pwdin’s doing (with some help from KaBoom). Besides, last year, when his little friends came to play Pwdin completely ignored every one of them. We’ve recently had to fork out on a special needs car seat (I’m still too furious to write about that without using expletives) so cash was tight, hence the tiny celebration.

Not a UTI

It was good to sit down with my hubby and a glass of pink and fizzy, that birthday evening and recall how we felt when he was born. Even before that: the OMG moment when I realised that my supposed UTI was in fact a pregnancy. How the anaesthetist and I were discussing how to get on to Countdown while I was having my c-section and the first time I got to hold that funny looking bundle of baby boy. We talked about autism: our disappointment with professionals, frustrations with friends who can’t accept or try to understand how Pwd’s condition affects him and us. We have never felt disappointed in him. Oh yes, he can be a frustratingly, infuriatingly stubborn character then so is someone else I know (guess who). I knew my child wasn’t typical from the start and I think having that realisation so early is a big boost to acceptance. Your happy hormones are flowing and you meet the child you’re going to love until your dying day.

He’s got better looking with age

I really do understand how parents who believe their child is developing typically only for that development to halt or for their child to regress must feel. I remember our wonderful (now retired) health visitor offering us counselling when it was becoming apparent to the professionals that our boy wasn’t “just a bit behind.” She thought we would be experiencing grief or guilt or both. She gently alluded to her belief, having worked with autistic children and adults that this would be what the child health team would be looking for. After a long conversation, this lady came to realise that what we needed was help to get a speedy, official diagnosis of autism because it was a conclusion we too had drawn from his behaviour.

Birthdays mark a year gone and yes, point to another year ahead, concepts that the Pwdin simply cannot understand. It may have been his birthday but it was a day for us, the people who love him, to celebrate this funny and complicated little boy.Pwd’s life, his way of living, is a beautiful thing. For Pwdin it was a celebration of cousins and cwtches.

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8 comments on “Four

  1. Love Many Trust Few
    3 May, 2012

    Lovely! My 5yo still has no idea about birthdays and couldn’t give two hoots about the presents or the cake but he does enjoy the cuddles and kisses and feeling so loved and treasured. And cousins are brilliant!!

    • Billa
      30 May, 2012

      Hi BevI just checked the site again and still there are only 4 stroies, some of which are very negative.I sent this email to he campaign organisers;”I notice on the section of the web site inviting insights into autism, there are only 4 stroies so far, all from parents, and some very negative about autism. I am parent to an autistic boy myself, and didn’t write my insight on purpose, since I think it’s far more important that the voices of autistic people are heard. I know that several autistic people have submitted their insights and am very disappointed that they have not been featured yet. Lots of people will visit the site only once and will never have the opportunity to read these people’s thoughts. Please pass my message on to the relevant people to ensure that this is sorted as soon as possible.I do think this is overall a very good campaign and commend the NAS for running it.”I hope they do change this asap as it’s very discouraging.

  2. lilady
    4 May, 2012

    Happy birthday Pwdin! Thanks for sharing his birthday and his baby pictures. Kisses to you all and feel better Autismum.

    • Autismum
      4 May, 2012

      Thank you. Cledwyn and I send big cwtches right back xx

      • Brokan
        30 May, 2012

        I have a 28 month old daughter dx’d with modrtaee autism, global delays, non-verbal and will be dx’d with dyspraxia when she turns 3. She started mild SIB about 9 months ago and so far we do the chewy tube and vibrating toothbrush to redirect her. I have watched some of your videos since I first suspected autism and you have shown so much courage and strength. I think you are the most awesome mom and you are so beyond calm, Jamey is such a handsome young man.I truly thank you for sharing.VA:F [1.9.17_1161]please wait…VA:F [1.9.17_1161](from 0 votes)

    • Musthafakm
      29 May, 2012

      One way is to be certain the mteohr is in good health before pregnancy. Celiac disease was common in my family, and so were amalgam fillings.Genetics may predispose a mteohr and child to the conditions that lead to autism, but do not directly cause it.There are three popular theories on what causes autism, and each have studies to prove it. They are not completely unrelated though.The first one is damage from mercury exposure. This can be from dental amalgam in the mteohr or child, thimerosal in vaccines, or environmental sources.Some studies show a link between autism and gastrointestinal autoimmune disorders, such as Celiac disease, which have been found in many of these children and their mteohrs. If an expectant mteohr had this condition without knowing it, both her and the developing child become deficient in nutrients that are needed for proper development.= sid=91hH9H1kBCiwEeL-59107273524.07Another theory suggests a massive immune response to the MMR vaccine, whether or not it contains thimerosal.Many children with autism lack a protein called metallothionein, which normally flushes heavy metals out of the body. This would explain why some children develop autism and others are unaffected. The digestive and autoimmune disorders may explain why this protein is missing.Many parents of children with autism claim the onset came soon after vaccination. There are countries and populations such as the Amish who do not have cases of autism in their children.One overlooked issue is that most vaccines, whether made for children or adults, are cultured in egg protein. If a child is not yet old enough to have been diagnosed with an allergy to eggs, these injections bypass the body’s only defense to egg protein, the digestive system.

  3. Budi
    29 May, 2012

    I am a psychologist who does tesintg in this area. There are many different ways to assess a child, depending on the age of the child, how much they talk, other skills they have, the kind of doctor you will be seeing, etc. As a psychologist, I typically do some kind of tesintg with the child to assess his or her basic skills (language, nonverbal skills), as well as his or her play skills and conversational skills. I also interview the parents about their observations and concerns. If I need to, I might also observe the child for myself in some kind of school or group setting. I always welcome questions from the parents, so don’t be afraid to ask!!! Let them know that you want feedback on what kinds of tests they have administered and how they have decided whatever diagnosis they give. And by the way, to the other poster who wrote about meds not all children with autism are given meds. And the ones that are given meds are usually hyperactive and/or aggressive and needs the meds for their own and others’ safety. Parents always have the final control over whether they give meds to their child, and should always be fully informed about the pros and cons. That’s exactly what I tell my parents it’s their decision!

  4. Rohman
    30 May, 2012

    I’ve heard lots of controversial teehrios. I’ve been working with the ppulation for quite some time. Some of the parents I have worked with were very young, and had more than one child with autism. Yes, I do think it is somewhat genetic, but I also think there is something environmental going on. Perhaps it is all of the pollution we are exposing our bodies to, such as pesticides, plastics etc. I am not convinced that it has anything to do with vaccines causing autism, but I do believe that a person with an auto-immune disorder would have a greater risk of reaction for obvious reasons. Don’t you think it could be coincidence? fathers and mothers just coincidentally are getting older as autism is increasing. Allergies are also on the rise because of how we are manipulating our environment. I don’t know the details of the study, but the number of subjects and other certain details are important for validity, so I’ll check that out. I am curious. Trying to stay healthy and teaching our children healthy habits is one way. Use more natural products. We really need to start watching what we are exposing ourselves to. I also read another study that talked about pollutants that mutate genes over generations. Something that our grandparents were exposed to two generations back can have an affect on our children.

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This entry was posted on 1 May, 2012 by in Autism, KaBoom, language, Parenting, Pwd.

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