Friday, 9 January 2015

I'm not invisible, I am his mum

Raising a child with special needs is very challenging for all parents but when you add a parent's disability into the mixture it can complicate things, cause a lot more stress and difficulties. My disability is invisible, you can't see it and you only know if I tell you. I am profoundly deaf and can only communicate through lipreading 100%, the tiny amount of hearing I have with my hearing aid is useless so I depend on my eyes and hands to communicate with the outside world. I was brought up to speak as my parents refused me to learn to sign at first as they were determined I would speak and I'm grateful to them for that as I believe my speech would not be as good as it is today. But as I've gotten older communication become harder as lipreading is my main source and it comes with its challenges as men have beards, moustaches, people have different accents, talk too fast, mumble, stutter, too quiet, don't use their lip muscles etc...all these can stop me from communicating with some people so if they are patient enough they will write what they say or use gestures. 

We were lucky as there are so many people who are very understanding and willing to listen to me explain to them how to make it easier for me to communicate with them but there are a small minority who make things as difficult as they can because of their ignorance towards disabilities. We found a small school for the boys as we felt it would be easier for us to get to know the staff and learn to understand their lip patterns etc and that has been the best decision for us and the boys have happily settled there. When Roo came along and we were thrown into the world of constant hospital appointments, meetings life became hard, more complicated. 

Luckily the majority of the professionals we deal with with regards to Roo care medically and educationally they have been fantastic in making sure we understand everything, in making the effort to talk things slower, repeat if necessary and send us reports of what went on in the meetings so that we could read it all and make sure that we hadn't missed anything out. The education side has been fantastic probably because the staff learn signs as they work with Sen children so it's been "easy" to understand them as they are aware they have to face us, talk slower, more clearer etc but there are a small minority of professionals who like to make life quite difficult for us and their ignorance staggers me more so especially when they often work with children with varying disabilities but I suppose they rarely come across a parent who has communication diffuclites themselves but in this day and age you would think they would be a lot more understanding and be able to make changes needed.

We had an hospital appointment yesterday with a doctor who was so ignorant. He wasn't our normal consultant as ours was running very late so he had asked this doctor to stand in. Normally my husband attends all appointments with me as although he is deaf himself he has better hearing than me as is able to understand people quite well as long as there is very little background noises and he translate it for me if I can't lipread them but he couldn't make this one so my mother came along. As we went in the room I do what I do at every hospital app - remind them that I'm deaf and they need to look at me when talking and move their lips etc...doctor just mumbled something, I asked him to repeat and he mumbles again , my mother who is standing behind him tells me what he is saying...I do what he askes and during the examination he continues to talk without moving his lips at all, switches the light off to do the examination ( eye checks) and carries on talking despite being told by my mother that I can't see his lips so she ends up repeating everything he says to me, he isn't impressed when Roo doesn't cooperate, when he starts to thrash about and I struggle to hold him - he is a big boy now and so strong that it's nearly impossible for me to contain him to stop him lashing out, kicking ...his understanding isn't great so doctor should have accepted that but instead he carries on mumbling, giving me disapproval looks then once it's all done instead of speaking to me to explain the results he gets up and turns his back to me and sits in his chair with his back to me talking away to my mother as if I wasn't in the room. I felt so small , upset and insignificant. I couldn't wait to get out of there as I could feel my anxiety and upset rising, my mother was shocked and commented on how awful he was in the way he treated me and was not willing to listen and make the effort with communcating with me. Next time when we go back to this clinic I am going to tell the receptionist and the nurse that I will refuse to see him again and will only see Roo actual consultant who is a lovely man who makes the effort to talk to me.

This is just one example of what I have to put up with...I've had some professionals asking if I can train my guide dog to alert me when Roo wakes in the night because the equipment I need is too expensive and would be easier if I trained the dog!!! I explained to them that the dog is trained for me not for Roo, that it would cost the hearing dog charity heck of a lot more to train her to something no dog has done than it would be for them to just give me the equipment I needed. Other examples are professionals who refuse to send me emails etc as I cannot use the phone yet they continue to phone me knowing full well I cannot answer and then they have the cheek to moan that I am difficult to get a hold of!! I have some professionals who are more than happy to email or even text me so why can't everyone be the same?! It's like my deafness is an inconvenience to them! It causes so much stress for me and there have been many times when I have felt like throwing in the towel but I don't, I keep on fighting for my son and i will keep trying to stamp out the ignorance and get them to listen to me as just because I have a Disabilty it doesn't mean they can ignore me and my feelings. I am my sons mother and carer and all I want is to be treated the same as all the other parents.


Wednesday, 31 December 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 measurement was off the scale....


I don't have any Santa hat pictures during Roo second & third Christmas as Roo hated anything on his head and got so upset that it just wasn't worth it... Last year we managed to get a picture as Roo started to develop a bit more tolerance to having something on his head. The hat fitted perfectly, same size as his brothers although it was a bit big on his older middle brother.


This year we put the same hat on him and unbelievably its too tight and we cant get it over his forehead! I knew his head had grown but slowly but I honestly didn't think it grew that much! He has now over taken everyone in the family and has a head measurement of 59cms. The curse of the Santa hat has struck again! Next year the challenge is on to find a bigger hat or I will resort to making one myself if his head continues to grow over the coming year.