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Showing posts from 2014

The Curse of the Santa Hat!!

Roo was a winter baby, born in mid November so I bought a baby Santa hat that goes up to several months old and when he was 3/4wks old I tried it on and it fitted him perfectly albeit a little bit too big so thought it would be perfect for Christmas day in 2 wks time. On Christmas Eve I decided to take a photo of all my boys wearing  Santa hat and I was shocked to find that Roo Santa hat didn't fit properly..I even asked Warren if he accidentally washed it and shrunk it but he said he hadn't, we were both confused and couldn't believe his head would grow that fast. We put it to the back of our minds and had a lovely Christmas with family...later that night as Roo was sleeping on my bed Warren commented that his head looked quite large and I admit I too had thought it but thought I was being to paranoid. We decided that we would ask the HV during his 6wk check...but unfortunately it was delayed till he was 11wks old and it was then that we started our journey as his head m…

Sensory Calender 2014

Another year, another sensory calendar done... I didn't do much as I hoped as its been such a hectic month and with Roo not sleeping his moods have been all over the place so have had to change several plans to make really easy ones..here are the photos/videos


Day 11 - Ice 
This was easy as it decided to try and snow today! It was mostly ice and mush not proper snow but thought I would let Roo out in the garden and he loved standing looking around him, touching the ice/snow..he wasn't bothered that it was freezing!!
Day 12 - Christmas party... Today the SN playgroup that Roo went to had their Christmas party..Roo enjoyed playing with the sensory beads, playing the drums before going through to the other room for some music and games before going for some food...Roo who normally stuffs his face wasn't too impressed with the food and was more interested in playing with the Velcro on the chair! Then Santa paid a visit..Roo signed "Santa" and tried to say it too 😀 he …

The worse form of torture!

Yes this is another post about sleep! 
I am seriously one sleep deprived mummy! All I wanted for Christmas was a decent sleep again but Santa failed to deliver so I'm not too impressed with him! In all seriousness this lack of sleep is becoming a joke, I don't understand why he is getting worse despite being medicated. 
When he was in hospital having his pressure reduced in his brain in March he began to sleep through every night, no longer screaming for hours on end, yes he still needed melatonin to get him off to sleep but he was now staying asleep and I started to believe that maybe we had solved his sleep issues...how wrong was I...for almost 3mths I got decent sleep, felt like a new woman, became happier and my older boys noticed. But then it was snatched away from me when gradually Roo began sleeping less and less. 
I begged for help from the disability nurse, admitted that I was struggling, that it was unfair on my boys to have a mum who snapped and didn't want to play…

Blowing a Dandelion...

If you were to ask me about flowers related to my childhood the one flower I would name would be the Dandelion. My friends and I would often spend the warm afternoons laying on the grass, with a dandelion in our hands and we would take turns to blow and counting how many we could see before they disappeared and often would say that it would tell us how many children we would have when we grew up! Somehow I don't think 17 children is realistic!! Sometimes we would pretend the seeds were fairies and we had to catch one to be able to make a wish....There are many different superstitious reasons people may blow them but for me it was mainly to make a wish...

There is something about blowing a dandelion flower, the sight of the seeds flying through the air is beautiful and sometimes magical especially to a child and if you are lucky to have a very sunny day you sometimes can see the seeds shimmer in the air.

When my older two children were younger I taught them this and they loved blow…

Silent Sunday

A special bond between a boy & a dog....

There are lots of stories about how dogs make great therapy dogs for autistic children but I believe that dogs are great therapy for any kind of disability a child may have. Its not just dogs who make great therapy pets but cats, horses and small animals. 
Ever since I was a little girl our family have always had pets , mainly dogs , and I grew up an animal lover. My very first dog was Judy - a springer spaniel who I followed everywhere, even slept walked to her bed and slept with her the whole night! When she passed away very suddenly it was heartbreaking as a pet is just like a family member and losing them is incredibly painful. My next dog was Black Bess who I got on my 18th birthday. She was special as she was completely mine and was sent away to be trained as a hearing dog...for 11yrs she was my constant companion as well as my Dad as he adored her and often asked to have her overnight! When she passed away from cancer before I fell pregnant with Roo I was heartbroken again and…

Two different worlds...

When I talk of worlds I mean like deaf world, disabled world, mainstream world, hearing world etc there are far too many to name but basically many people class certain things as a world to tell the difference ..its always been like that... for example when younger I always thought of myself as a deaf child in a hearing world until I went to boarding school when I became a part of the deaf world as I was with people who were just like me and understood me.

When Roo came along we were thrust into the disabled world and have made many friends who understand the difficulties of having a disabled child but lately I have been feeling that Roo doesn't belong anymore. Its hard to explain, but things have changed that may be subtle to others but due to my deafness I am more aware of little changes and can sense that things are no longer the same.
The school that Roo attends is a mainstream school along side the Hub which is where classes for disabled children are held and they also have …

Dad's are amazing too...

There is one person in my life who remains at my side, loves me unconditionally, supports me through the hard times, is my rock and my soulmate...he is also my children's Daddy and one of the best. Since we first got together in our college days we both wanted a family, he shared my dreams of becoming a parent, to have a child to love and cherish forever...when I learned the devastating news that I was infertile it was him who pulled me out of that dark hole, who helped me to stop being angry at the world, who made me happy again, who told me to never give up...after many fertility treatments we now have three gorgeous boys together who we love and cherish dearly. These boys complete our lives make us whole.
My husband is a brilliant father who clearly adores his boys and is fiercely protective of them. He may stuggle to show his emotions, speak his thoughts but his boys know that he loves them no matter what. They know he is always there for them...he is the joker in the family, h…

Simply Amazing!

I just want to tell you that my son is truly amazing...the change in him in 3mths is amazing itself that I keep thinking to myself "it's not a dream it's real!" 
What is so amazing you ask? Well he is communicating!!! I cannot believe it....he is so interested in sign  language and will now try to copy a lot of the signs we do and is even trying to say the words! It's like someone has flicked the switch and he is realising he can make vocal sounds and while a lot of the time he comes out with lots of babbling he also throws out words which often aren't said correctly but is still clear enough for some people to understand what he is saying :-) we still have days where he won't make a sound but as long as he keeps up the good days then I'm not worried about that. He also has started pointing, gesturing to things that he wants which is mainly to point at the biscuit cupboard or the fridge! Can you tell my boy loves eating?!! He will also grab your hand a…

Different signs...

As a young child when I spoke my first word there was many cheers and excitement and by the time I was 18mths old I could speak over 50 words much to the amazement of my parents and professionals and was even put in the papers nicknamed "chatterbox" ! What was the big deal I see you thinking as all children go through this...the difference was that I was born profoundly deaf and my parents told that I would probably not speak well and to teach sign language...my parents were determined to prove them wrong and dedicated all their time in talking to me, ensuring eye contact at all times, wearing hearing aids as they were sure I could speak eventually...their hard work paid off and now I can speak fluently like many hearing people...in fact many don't realise that I am deaf until I tell them.
I grew up in the hearing world, and being able to speak well helped a lot but it was still hard...I didn't know sign language as my parents wanted me to learn communication via spee…

The Mystery of Roo

Roo is a mystery to the medical world and always has been...as he gets older he becomes more complex and springs up more mysteries on the doctors! We are forever searching for clues that can lead to possible answers...The medical world aim to keep searching until they finally get the answer they and ourselves have longed for...But as time goes by I am starting to accept that our son may always be a mystery...we may never get answers and that's scary in many ways as it means we have no idea what the future will hold for him...So far on this journey we have come across many clues which were hopeful only to be dashed and told that the clues had come to a dead end..no one knew how to take it further or what the next step will be....
Roo has undergone many tests and even then the results are never straightforward and leaves the doctors scratching their heads and wondering why the clues aren't adding up and instead increase the mystery that is Roo... Since we started this journey w…

Tough week

Every time we end up in A&E there are always a barrage of questions thrown at us which I can understand as they need to get as much background information etc but it gets quite trying when the 3rd or 4th doctor comes in and repeats everything that was asked!! Why don't they read the notes that the very first doctor put on the notes instead of constantly asking us the same questions over and over and its hours before anything productive gets done... Also they always seem to ask me questions about his birth & my pregnancy which to me is strange as it has nothing to do with the matter at hand ?! What does my pregnancy issues have to do with him dehydrating?! And then after answering and explaining every question they then say " its OK we can just read his notes" !

Over the Easter holidays Roo ended up in A & E due to dehydration and needed a line put in...I warned them that Roo hated needles, hated being held down and that he would fight it no matter how poorly …