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Showing posts from 2015

A letter to my MP about rare & undiagnosed conditons

George Kerevan
House of Commons London SW1A 0AA


Dear George Kerevan,
All party parliamentary group on rare, genetic and undiagnosed conditions.
I am writing to you as my MP to ask you to join the All Party Parliamentary Group (APPG) on rare, genetic and undiagnosed conditions. Rare, genetic and undiagnosed conditions are often life-long and serious, affecting multiple systems of the body. Many of them are progressive, meaning that the health and quality of life for affected individuals will continue to deteriorate throughout their lives and many of those affected will die prematurely. The vast majority of rare and genetic conditions cannot be cured and most have no effective treatments. Families like ours frequently experience delays in gaining an accurate diagnosis for their or their loved ones condition and can struggle to access appropriate care and support. My son Reuben has a rare genetic condition that doctors have so far been unable to identify and he is currently on the Deciphering De…

Professionals v Understanding & Awareness

Dear Mr Audiologist,
You saw my son for the first time yesterday during a hospital appointment to see the ENT consultant. I saw you look at my Hearing Dog for the Deaf then you glanced at me and carried on talking very fast. A quick interruption was needed to tell you I was profoundly deaf and needed you to talk slower, clearer and facing me. But that proved too hard for you as I had to rely on my mum to explain some things that I hadn't managed to lipread. Not impressed at all. Then you started doing this test, talking to my son explaining what you wanted him to do. I watched quietly thinking to myself " have you read his notes? What part of limited understanding don't you understand?" I could see my son just copying your actions, not concentrating as he didn't understand what was expected of him. I said that this kind of test wouldn't work but you wouldn't listen and kept trying and getting slightly annoyed until you said " this isn't going to w…

Stop Staring!

Staring is something we have all done at some point in our lives...many say it's a natural thing to do but there comes a point where staring becomes rude, offensive and hurtful. 
A street entertainer doing amazing, unbelievable tricks making everyone stare - that's ok.
A person standing on steps, chair, stage to give a unprompted speech making people stare wondering what going to be said - that's ok.
A child sits in a wheelchair, screaming while his mother tries to console him and people stare, muttering under their breath - not ok.
A woman walking with a dog by her side, not a pet dog but a guide dog and people stand pointing and staring - not ok.
Staring has become a big part of my world as well as that of my family. It was easier when Roo was a baby as you couldn't really tell that there was something different about him...as he got older he remained using a buggy and we get comments like " isn't he too old for a buggy" , " he is lazy , you should be m…

He should be but isn't ...

At the beginning of this year during a big meeting it was mentioned by several people that it would be beneficial for Roo to be deferred for a year so instead of starting school this month he would remain in the nursery redoing his preschool year. I understood their reasons and actually agreed that it would probably be better for him as despite all the progress he has made there was no way he was ready for school so we were handed paperwork and filled it all in and the professionals involved wrote their reasons for supporting this decision and sent it off to wait to hear if the LA agreed to the decision. We didn't have to wait long as we soon got a letter saying that the LA agreed and things were set in motion ready for Roo to return to nursery with full time support. When the letter arrived I actually felt relieved as it was one less battle for us but then I could feel tiny niggles of doubt trying to creep into my mind but I pushed it to the back and concentrated on the summer ho…

Goodbye Green Room..

Shortly after Roo's 1st birthday his Paediatrician referred him to join Kidzone which is a playgroup for children with additional needs. Must admit I was really apprehensive about it all, not sure what to expect as it was a completely different environment to what I was used to with my older boys. It wasn't just a new experience for Roo but for me as well but I needn't have worried as all the mums were lovely as were the staff..it was through this group that we were told about the Green Room that provides nursery provision to special needs children from the age of 2-5yrs & it was recommended that we apply for a place. Shortly after Roo's 2nd birthday he started going to the Green Room for two afternoons a wk which then built up to 2 full days a week.

The Green Room is a great place, as they have various different areas all accessible for the children regardless of their disability. They also have access to soft play ( a big favourite of Roo's!) and sensory room …

Bank holiday antics!

So it was bank holiday weekend just past, it was far from a 'holiday'! I'm pretty sure my greys are growing in so much faster than normal!
Why? 
Because of the endless antics my youngest got up to! Here are a FEW examples of what he got up to -
What's that white thing? Oh it's a wipe behind the glass...he managed to find a very small gap at the top and squeeze the wipe through! So the whole thing is gonna have to come apart in order to remove the offending wipe...what is it with children and wipes? If Roo sees a wipe packet lying around he makes a beeline for it and cleans the house with them ( think he doesn't rate my housekeeping skills?)

While he was quietly lying on the floor playing with his car I sneaked the opportunity to have a seat and drink my cuppa which was going cold after me abandoning it because he had gone upstairs of his own accord...I see a white thing flying past, just missing my cuppa...on closer inspection it turns out that while I thought he w…

Sleepless

You start screaming so I lift you to see what's wrong, Nothing is obvious apart from your distress I see you pulling your eyelashes The tears running down your cheeks I hold you close, whisper in your ear that it's ok Your hands are covering your face You scream on and on ,  Eventually your screams turn to sobs which turn into sniffles  You keep your eyes covered refusing to look at me, If I try to move your hands you start to get upset, Eventually your breathing slows and becomes deeper,  I know you are sleeping I keep cuddling you close wishing I knew what was wrong When you wake up from your sleep you aren't happy You scream and cry in distress, I try to hug you but you push me away I put my hand on your back to comfort you but still you scream even more You push me, kick me your way of telling me you can't bear to be touched I sit beside you letting you know I'm near It breaks my heart that I can't comfort you That I can't just scoop you into my arms to comfort... I try lif…

Years flying past, still waiting on answers..

As Roo's fifth birthday approaches later this year I never dreamt that we would still be on this journey - being undiagnosed. When his issues came to light at 11 wks old and underwent tests in hospital I naively thought that they would find what was wrong and give him the treatment he needed and then everything would be OK ...how little did I know that it was the start of a long journey. As the months,years went by I found it hard to understand why consultants, professors in the medical world could not find out what was wrong with my son, they had been to university for years to train in their profession so surely they should be able to find out what was wrong. Not long after we came across an article in the paper of a little girl called Jess and it talked about how she was a SWAN - Syndrome without a name so I was curious and started googling and soon came across the SWAN Facebook page & website I was amazed that there was many other children like Roo out there , who were als…

Small things that are huge in a Sibling world...

In the background of most special needs children are their siblings, they are the ones who have had their lives changed from what they are used to when their disabled sibling has joined the family or if their disabled sibling is older than them then they have known no different and are "used" to their life. They are the ones who often are left to their own devices when parents are busy doing therapies, tending to the child needs as many need 24hr care, they are the ones who are often left with other family members when their sibling goes into hospital, are often dragged to the various hospital appointments and left to amuse themselves in waiting rooms. They also have to grow up much faster than other children as they have to help out around the home, help to care for their disabled sibling, sacrifice days out & lose out on holidays if they have to come home earlier than planned due to their sibling being unable to cope the the different environments, they have to deal w…

The first show..

I often hear parents saying that they wish they were a fly on the wall so that they can see what their child is like in nursery/school and there have been times when I've thought the same but more so at the moment as with Roo he can't tell me what he does , has been doing etc.
Last week Roo nursery class held a small party to celebrate Burns day so hubby and I went along, curious as it would be the first time we would see Roo with his peers. We watched him come into the hall along with all the children and our first thought was "hope he doesn't see us"!! Reason being was at sports day last year when he saw us he got upset wanting to come to us and didn't understand why he couldn't. But this time when he saw us he gave us a wry smile! 
First part was some Scottish dancing and we watched with big smiles when they did the moving in a circle as Roo clearly loved that - running round in a circle holding hands as he had a big smile whenever he did that part! When…

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 comm…