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Showing posts from October, 2016

Not on the dirty floor

Baby changers are a great necessary aren't they for whenever parents go shopping, hospitals, days out, resturaunts name it and practically every place will have baby changing units. They are a life saver esp for those poonamis (poop explosions that basically go everywhere and require a full clean set of clothes)! But where are the facilities for those children more specifically disabled children who are often incontinent for much longer , sometimes for the rest of their lives?
There are less than 1000 changing places in the UK alone...that's shocking considering how many toilets there are that come with a baby changing unit. In this day and age people go on about human rights, equality and do everything they can to ensure their needs are being met but what about disabled children/adults? They deserve dignity just like the rest of you, decent changing facilities are needed to make this possible.
Would you sit on a public toilet floor? Would you even walk bare footed…

Tuning her ears

We were looking forward to Faith getting her new hearing aids and seeing how they make a difference for her...with the help of Leo my eldest we chose pink coloured hearing aids (how I wish they let adults chose coloured hearing aids instead of the boring tan or silver coloured ones !) So when her appointment finally came through to get fitted we were looking forward to it. She was 10wks old when she got them. We watched patiently for an hour as they tuned it to her levels of hearing , trying the moulds, getting new ones done as they didn't fit well, watching them put tubes in her ears to try and record feedback levels etc etc. .she tolerated them and even fell asleep during it as it was rather boring for her! We didn't need to learn how to look after them as We already know with our own aids, we were given a bag with various things like battery checker, puffer, cords to attach hearing aid to clothes so you don't lose them, double sided tape to tape the aids to her head! Y…

Halloween is too scary

It's that time of the year again that many children love - Halloween. Dressing up, carving their pumpkins, going trick n treating, parties and most of all the huge amount of sweets they get!!! I must admit I have never allowed my boys to go trick n treating purely because all my friends live too far away & with the world we live in now, its not safe and I get too anxious. But thankfully my boys aren't too fussed and are happy enough with the parties at school and our little house celebration on Halloween night.
But when you have a child with additional needs who is terrified of Halloween you come to dread this time of the year every year, longing it for to be over so that your child can be less anxious and you don't have to worry about going out,  and visiting shops.
Roo's very first Halloween was special as he had just learned to sit unaided 3 days beforehand which was a huge milestone considering he was 3 wks from turning 1. We captured that moment on camera with t…

The older one

The one person who has surprised me with how supportive and caring he can be is my eldest . He is the one who showed me what motherhood is like, taught me the ups and downs of being a parent, who showed me that the love between a parent and child is unlike any other. When his brother Lucas came along he played the adoring , protective big brother until they got to a certain age and sibling rivalry started and still goes on to this day! Then along came Roo and he was so upset when he realised Roo was different to Lucas and had issues, we were often at the hospital during the first few years of Roo life so he was often sent to his grandparents or aunty house to be looked after along with Lucas. He also started to become difficult and emotional at home and in school he was bullied for a while due to having a disabled brother and parents who were deaf. We put a stop to the bullying but the damage was done. He became angry and resentful esp towards me. Young carers helped for a short time…

A simple gesture

This time last year we were told we had to make a decision about what education setting would be best for Roo. After many meetings, speaking to various professionals all who had their opinions, sleepless nights and wishing for a Crystal ball so that you could get a glimpse into the future to see if the decision is the right one we finally made the choice. Despite everyone's different opinions the decision was ultimately up to us as we were his parents. It was so hard as we were scared of making the wrong decision but we realised that we couldn't look too far forward into the future, we needed to concentrate on the present time so decision made, paperwork done and then it was summer break so we put it all behind us and concentrated on having some family time.
As the day drew closer for Roo to start school , the sleepless nights started again (well we already have sleepless nights but I'm talking about the precious hours that I was allowed to sleep but now unable to due to my…