Parenting from a special Perspective: Caring in the Chaos

25 April 2016

Ever wondered what it is really like to parent from a special perspective? Parent to a Special Needs Child? Where do you turn for help? What challenges do you face? What has surprised you? What have you learned? Every month I will be featuring one of my brilliant fellow SEND bloggers and sharing their reflections on raising a child with special needs.

Welcome Nadine. Nadine blogs over at Caring in the chaos. A blog about her journey as a single mother and a carer to a beautiful toddler. A place where she shares learnt developmental tips in speech and language, Occupational therapy and Physiotherapy. Please pop over and take a look. 



1. When did you first realise your child has Chromosome 18Q?

I had no idea my daughter was born with a condition, all was fine throughout the pregnancy it seemed, up until 36 weeks when they thought she was a bit small - so they opted for a planned c section. When she arrived she was tiny at 4lbs but she was healthy - it was only 6-8 weeks later things started happening infections, crying and trips to A&E that alarm bells started ringing.

Around this time I started to suspect something was wrong with her head, as it seemed bigger than normal. It was hard to get people to agree with me - as she was born so small, I was reassured constantly that she was ‘just growing’ but something didn't feel right and I went to Dr Google and came to the conclusion she may have Hydrocephalus (Water on the brain). Her face and eyes were different, her eyes had a sunsetting look. I was however ignored by doctors - brushed off as a nervous first time mum.

Some 6 months later she was formally diagnosed with Communicating Hydrocephalus.

It was not one of those times you actually want to be right.

This lead to genetic testing where she was diagnosed with Chromosome 18Q.

Autiquotes: Quotes about Autism

19 April 2016



My aim is to spread a positive message about autism through my writing and to help my son to grow up in a world of understanding, compassion and acceptance.




Book Corner: Sir Charlie Stinky Socks and the Tale of the Wizard'sWhisper

18 April 2016


My book corner choice this month is: Sir Charlie Sticky Socks and the Tale of the Wizard's Whisper by Kristina Stephenson.

The Tale of the Wizard's Whisper is a legendary tale of Knights, castles, Wizards and monsters. Sir Charlie is a truly brave knight who along with his faithful cat envelope and good. grey mare goes looking for a new adventure. The adventure involves them going on a quest to find the wizard's whisper.  Along the way he encounters a treacherous track, a frightful ogre, worrying signs, a spooky-wooly wood and ends up in a deep, dark cave with an old crone.


Mummy's law

13 April 2016

Dear friend,


I like to consider myself a positive thinker and I do believe that having a positive outlook can affect our general wellbeing but today that belief is being tested. Have you ever heard of Murphy's law? 

Murphy's law is an adage or epigram that is typically stated as: Anything that can go wrong, will go wrong (Source Wikipedia.) 

Well today I've decided to adapt it and rebrand as 


Mummy's law...




  • Relax in the tub/take a shower. Are you serious, someone will suddenly need a poo or desperately need to ask you where their football kit, cuddly toy or keys (hubby) have gone.
  • Put on your makeup.  LOL someone will have lost a sock or had a water disaster in the bathroom so you end up going about your day oblivious to the fact that you only managed to put mascara on one set of eyelashes.
  • Drink a hot cup of tea. Forget it. Your mummy brain will draw you to empty the dishwasher, to wipe down the kitchen surfaces and feed the dog.
  • Chat with a friend on the phone. I can guarantee you will need to pause at least 5 times to avert a disaster, stop a fight, ask them to switch the TV down or stop them from raiding the cookie tin. You are lucky if you can finish one full sentence. 
  • Eat your dinner. You will never again eat anything warm because you will spend every meal, spooning food into mouths or cutting up food or taking kids to the bathroom. Once your kids are older your food will never be your own as they will want to try it and then usually swap plates as mums is always nicer. 
  • Watch TV.  The TV will be constantly tuned to kids channels. If you do try and watch something you will be asked, What is this? repeatedly. You will never again get to watch anything all the way through because you will give in and put the kids channel back on.
  • Get ready for a night out in peace. One child will cry, one will want a story and one will say they are feeling sick so that you spend your whole evening worrying about them.
  • Go to the toilet. As soon as your bum hits the seat a child will appear, they either need you or have just come to watch as heavens forbid you should be allowed to poop in peace without them.
  • Dry your hair. There's something about a hair drier that makes toddlers behave like a dog with its head out of the car window. Toddler will demand blasting every 2 minutes. Someone will have lost something again or will fall over. You leave the house with half dry hair then spend the rest of the day with an attack of frizz, looking like Worzel Gumming. 
  • Go to bed early/Lie in. Kids have a radar that knows to surprise you by arriving at your bedside every half an hour, suddenly having a temperature, needing a cuddle or being sick. 
  • Read. Forget the John Grisham or Marian Keyes your author of choice is now Julia Donaldson or Claire Freedman. When you do find time to read you can't follow the thread because you've been interrupted so many times you don't have a clue what's happening.
  • Carefully select an outfit. Instead of spending ages selecting the perfect outfit with carefully matching accessories you have a 5 minute window to get dressed and will wear anything that fits and is clean but doesn't make you look like your mother.

What are your Mummy law moments?


Autiquotes: Quotes about Autism

12 April 2016


My aim is to spread a positive message about autism through my writing and to help my son to grow up in a world of understanding, compassion and acceptance.




Parenting from a special persective: with Steph Curtis from Steph's Two Girls

11 April 2016

Ever wondered what it is really like to parent from a special perspective? Parent to a Special Needs Child? Where do you turn for help? What challenges do you face? What has surprised you? What have you learned? Every month I will be featuring one of my brilliant fellow SEND bloggers and sharing their reflections on raising a child with special needs.


Steph Curtis started blogging over six years ago at Steph’s Two Girls  when her youngest daughter Sasha was given a diagnosis of ASD. It is believed that she actually has a specific type of autism known as Pathological Demand Avoidance (PDA). 
Steph is keen to raise awareness of this condition and runs courses for parents to help with strategies for everyday life with PDA.


1. When did you first realise your child has Pathological Demand Avoidance (PDA)?
We first referred our daughter for speech therapy just after her 2nd birthday as she was making plenty of noise/sounds but no clear words. The speech therapist who assessed her referred us straight on to a paediatrician, saying that was just routine. Our girl was 2 and a half at that appointment with the paediatrician when autism was first suggested, and a month later the ASD (autism spectrum disorder) diagnosis was given. It was probably a year later, after I'd had a 'lightbulb moment' when reading about PDA online, that the secondary diagnosis of pathological demand avoidance behaviours was given.

Autiquotes: Quotes about Autism

5 April 2016


My aim is to spread a positive message about autism through my writing and to help my son to grow up in a world of understanding, compassion and acceptance.
L

Photography @My_Dutch_Angle

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