Sunday, 27 September 2009

September Sun....

September - we know the summer is coming to an end and Autumn just around the corner....
The sun has still been shining here in the UK - these photos are from 2 weeks ago, but yesterday was just as glorious........... oh I do enjoy the summer. The sun just makes me feel happier, more energetic and more enthusiatic!!

Winter makes me the opposite :>(

Joshua has started to ask me "How many sleeps until Christmas Mummy?" - YIKES........ not many really (89 actually..) I have told him "but before Christmas we have many other fun things -
  1. First it's Hull Fair.
  2. Then Half Term - off school for a week.
  3. Then we have Halloween.
  4. Then it's Bonfire night.
  5. Then Emily's 4th Birthday.
  6. Then it will be Christmas.

It made me sit back and think.."why does Winter make me sad?" With so much fun and two beautiful and amazing children to enjoy that fun with!!!! It's time to re-train that part of my brain I think!!!!!

I also think today I will have to start on that Christmas Card and Present list.........

Sunday, 20 September 2009


For those of you that wasn't aware we have had a couple of meet ups now with a few families that we have managed to trace with the same genetic syndrome as Emily. It was another lovely little gathering with many a shared story and priceless advice and support over this weekend.

(minus one Mum who was unable to attend this gathering - she was missed!!)

(again minus one!!)



Tuesday, 15 September 2009

My 1st Dance Class

Last week whilst I was at the Children's Centre for an appointment with Emily, I checked out the notice board and saw this ~ "MINI MOVERS" a dance class (movement therapy) session for children with Special Needs............... (I was very excited).

Having a little girl I have always looked forward to doing dance class and things but certainly didn't have the confidence to take Emily to a "normal" class!

So tonight we went along for our first session............................

It's a small group of 6 children including Emily with SN then a few siblings - a nice friendly non-judgemental group.

I enjoyed it but have suddenly realised I need to lose A LOT of weight and get fit FAST!

As for Emily, she struggled bless her........ obviously I knew she wasn't going to be able to do any dance moves as such or actually do a lot of what was been asked but she struggled with the environment. New surroundings, new faces, new instructions - she found it hard and again complained of it been "too noisy" even though it wasn't. I'm finding that she is so hyper-sensitive to noise (perhaps another 17q trait - learning every day). She also struggled with some of the fabrics that we used during the session - perhaps another sensory issue showing its face!!!

In between her screaming and throwing herself on the floor - we did manage to have some fun - Mummy and Emily doing dance class together - it felt nice.

I will try her again next week - a little bit at a time is the best way with our children xx

Wednesday, 9 September 2009


The process for Special Education Needs in the UK is not a simple process.......... that we are definitely learning.

It's no-ones fault I suppose, just an awful lot of policies, procedures and red tape.

Where are we at?

With the support of many of Emily's professionals and advice/guidance from many special people we have finally managed to get a "Statement of Educational Needs" put in to place - that was a long journey in itself - it began October 2008....... but we have achieved it.

Now we have to try to choose a school - the next chapter of that same journey.

Now just to complicate things even further we live on the outer border of Kingston Upon Hull and the schools we are choosing are classed as the East Riding of Yorkshire Council - now this is where the problems arise. Strangely the two Councils work an entirely different system when it comes to the funding of SEN so SOME schools are quite off hand the minute we mention we are from Hull......... I sometimes just wonder...... I am a Mum to a child who "must" have her needs met, I really don't care about the cross-border issues of whom will be paying for it and how..... I just want the best start for my daughter!!!

Policies, procedures and red tape - I suppose it's there for a purpose - as a Mum that purpose is just giving me one big headache!!!!! Life is difficult enough with a child with special needs without these added stresses and obstacles.

I know we will arrive at our destination eventually as we have some amazing people helping us (if you are reading this - THANK YOU).

I will keep you posted - when my headache has gone!!!!!

Tuesday, 8 September 2009


I'm wondering where the school holiday has actually gone....... 7 weeks of doing!!
Doing what?

HAVING LOTS and LOTS of FUN...........
Holidays, Days In and Days away

Camping weekends, hotel stays, Legoland and Chessington Adventure World to name just a few.....

Me & my big brother gooning around in my room.....

On the big wheel with Papa"gripping on for my life" - trying to look like I like it.........

"NOW THIS I DO LIKE" cheese.....

Meeting Bob the Builder and Wendy - my brother telling me "be careful Em they are made of Lego" ~ "as if I didn't know"

"do I like him or don't I - I'm not too sure about this one"

Oh darling Emily - you had us in stitches here!!!!! When that huge pig "oinked" you jumped so high and actually tried to run!!

We had fun on the beach - several times this summer!!

We surfed with friends......... well pretended too anyway......

and WE CAMPED.... (a few times)


Wednesday, 2 September 2009


Since receiving the diagnosis, Emily's Paediatrician and her Geneticist recommended she have a heart scan and kidney scan as a precaution to see if she had any abnormalities that haven't been picked up.....

So today we attended the hospital for her appointment for her kidney scan.

I wasn't nervous for this, I felt quietly confident that all was well. I was hoping that the number of times she has been in hospital surely if there was anything they would have picked up on it before now!!

I explained in advance to Emily what would happen at the hospital, she did a lot of nodding so I took that as she sort of understood what Mummy was telling her. I prayed that we wouldn't be kept waiting for too long, Emily does not understand the word patience and I don't cope too well on my own when she goes off on one!!! Getting more regular by the day........

It all went fairly smoothly..... I was concerned that Emily was going to scream been in the dark room, her sensory issues are getting worse as she gets older but I managed to keep her quite calm considering I could tell she was not happy with her surroundings.

And yes - all did seem well on the scans - so relief, one less thing to worry about.

So why the title I hear you wonder: A couple of things did make me feel sad today. The last time I was in a similar room, I was having in depth scans myself "Downs Syndrome Marker Scan" to be exact (on Emily) due to my triple test results showing I was high risk- we were told our baby was fine, our sleepless nights of worry came to an end so I could finally enjoy my pregnancy carrying my healthy baby Emily...... little did we know.

Also I felt sadness, watching Emily laid there having this scan which was no different to having your baby scan, it made me question her future - will she ever have children of her own, will she ever have that amazing feeling of lying there watching the miracle of life moving in your tummy - who knows, it's a long long way in the future but it did make me feel sad that the probability may be no.

I suppose for now I should be focusing on the one emotion "RELIEF" xx