April 2012 – We reached Kandang Kerbau Children Hospital at 1030hours and was told your surgery was scheduled at 1530hours! We had to take turns to soothe a cranky crying hungry you! Your last feed was at 0400hours! We appealed with the nurses to get us an earlier slot. Seeing you cry and beating you [...]
Dear Darya I applied 2 weeks leave post surgery. The things I do to distract you playing nurse. I took you out to distract you from your pain. I guess that kinda work heh heh! When you got into your cranky episodes, I would babywrap you and around the blocks we would walk. I think [...]
Dear Strong Trooper o’ ours 5-6 weeks of having that Suzuki Frame inserted in between your bones caused us adult to cringe each time you slam your wrapped hand against the wall or floor. Especially the floor because you were trying to crawl. Your change of dressing was every Monday and yet the wrapping looked [...]
Dear Darya my little ultimate warrior 26 July 2012 was your scheduled Syndactyly Surgery and it was also the midst of Ramadhan, the fasting period. I was not much of a nervous wreck with your 2nd surgery as compared to your first. I was so at peace, I was almost Zen-like. Ohmmmm hur hur hur. [...]
Monday 30th July 2012 was your first change of dressing post surgery. Oh boy, I told your Aby, brace ourselves for deafening screams, wails, punching and screaming…. jyeaaah we know the drill he said. Like this?Read more… Recommended by Love, Umi The Master Rantor
The Children and Families Bill, currently working its way through parliament is very big on practitioners in education, health and social care working in partnership with parents – or “co-production”. Now, this is clearly a fine goal, but it is going to require a shift in attitudes on all sides and an extensive programme of [...]
Our baby was to go to theatre. I recall nothing but going into the theatre with her and my husband carrying her. A large room with a team of experts in it, just there for our daughter, waiting to recieve her. Bob held her in his arms, just as he had the day she was [...]
It’s a grey, drizzling and miserable kind of day. The house feels dark and dismal, with a closeness that is almost claustrophobic. I hate these kinds of days. They lower your mood to a pitiful level, leaving you lethargic and sluggish, with a head full of murky fog. But there is a spark of brightness [...]
Hair has always been hugely symbolic for me where Natty is concerned. I recall thinking in the first few hours of her life, that she would always have the best haircut I could afford, and that I would always make sure it looked nice. I suppose I had in my minds eye the standard issue [...]
Aspie boy is my third child, and not diagnosed until the age of 8. Getting the diagnosis was a relief, it seemed to explain his differences, and would surely mean that he would get the help and services that he needed. I bought a few books about aspergers, and it all seemed fairly straight forward. [...]
The most popular post on Special Needs Jungle continues to be about the condition Pathological Demand Avoidance Last week I met Deborah Rourke, who wrote the post – it turns out she lives close to me so I hope we will see a lot more of each other. There is to be a PDA Awareness [...]
I tweeted this earlier, but think if I make a post about it, more people will see it and be able to pass it on to those for whom it will be sorely needed and very welcome. If you know a family like this, please make sure you forward this post or print it out [...]
My little man is on the spectrum, he is classified as HFA (High Functioning Autism) why is this? Well he walks, he talks and is now learning how to socialize, he is now 8, at the age3 we had never heard the words Mummy, daddy or I love you, we never had a cuddle without [...]
I think we were halfway through the post-surgical slide presentation when I noticed that it had started snowing. It had been a long morning already in Toronto. We had woken up very early, gotten ready, bundled up all the kids–against what was very much winter here–and hit the highway by six. Traffic had not been [...]
It’s Autism Awareness/Acceptance Day, Month, whatever… lots will be written today about what autism is and what it isn’t. No one expects to have a child with an ASD/ASC, whatever they’re calling it this year. Once you have the diagnosis, it’s like entering a parallel universe of impenetrable mazes with multiple dead-ends, where people speak [...]
When we visited Mr T last week, along with other mum bloggers, we discussed the excellent help that several of us had experienced (as well as those aspects of the system which had failed us). We then talked about how this information could be developed into “Beacons of Good Practice” that the Government could highlight [...]
“We may not work at the moment, but if we could we would be at the moment it’s not possible. Just because we aren’t working it doesn’t mean our children won’t, as both of our eldest daughters are following their dreams.” Until 5 years ago Gary Freer, father of 9 Like this?Read more… Recommended by Pinkoddy’s [...]
March is cerebral palsy awareness month and today is National Cerebral Palsy Awareness Day in the US. I don’t think that cerebral palsy gets as much attention as other disorders and I was unaware of these campaigns until today. So I feel I have to do something to change that! Like this?Read more… Recommended by [...]
Dear Darya 8 months post surgery and strangely, sometimes I miss your webbed fingers. *shrugs shoulders* You were born with that awesomeness. So I miss that awesomeness. Hehe. So sometimes I have post-syndactyly blues. Hahahaha I know, I know, get a grip Umi. Like this?Read more… Recommended by Love, Umi The Master Rantor
Here’s a video made by the DfE about when Ed Timpson, the SEN Minister, came to Surrey. It features families and young people trialling the Education, Health and Care plan and two key people from the Surrey pathfinder whom I greatly admire, Susie Campbell, Surrey’s Pathfinder Manager and Julie Pointer, Transition Development Manager. Like this?Read [...]
