Sunday, 28 February 2010

Meet Bobby..

When Emily arrived at her special school setting on Thursday, the children very excitedly told Emily (or the teacher did....) that the previous day they had had a day out to the local BUILD A BEAR shop...

They all chose the bear, its clothing and accessories and brought him back to school (his new home) and for the naming ceremony !!!  They decided on


The idea behind Bobby, is that each weekend one of the children will be chosen to take the bear home, to be loved, looked after and entertained - with photographs and a work book to show off what you did with him.

As Emily only attends the school on a Thursday and Friday it would be difficult for us to take him home for the weekend as we wouldn't be able to get him back for a Monday {I don't think the children would be very happy him being missing for nearly a week!!}  So Emily got to be the first child to babysit him ~ Bobby came home with us on Thursday and went back again on Friday - EMILY LOVED IT, was very loving and nurturing with him, she let him wear her pyjama top, she insisted we put a nappy on him and she slept with him ALL night.

Wednesday, 24 February 2010

Lunch in a Box..

Emily is doing quite well at her mainstream pre-school right now.  The progress we have seen in her confidence these past months is quite amazing.  Many factors are contributing - her natural development in age, having an extremely experienced and passionate support worker, her starting a special school for 2 sessions per week and of course not forgetting the therapy sessions that Emily now attends weekly........ so we thought we would introduce her to something new!!

So, on Monday we thought we would start trying Emily at staying packed lunch at her mainstream school.  A lot of the other pre-school age children do it once or twice a week - they stay just an extra hour after their session and all have their packed lunch together before us parents collect them - another way of getting ready for "big" school in September!!

Emily's support worker stayed with her (thank you yet again Siobhan).  I'd done a mixture of things as Emily is a bit picky on what she eats at times and I explained I had made a sandwich so she was like her friends, BUT I explained, she wouldn't eat it as she never eats sandwiches!!!!!

You're probably guessing what I'm about to say.... "YES, that's right - she sat very very nicely I ate EVERYTHING" !!

Emily thoroughly enjoyed her first "lunch in a box" experience - although that extra hour totally wore her out.

Both yesterday & today - she was not impressed AT ALL at having to sit with Mummy to have her dinner.  She kept on signing "friends" as she wanted to sit with them to eat again.

Did she sit nicely for me and eat her sandwich - surprisingly NO SHE DID NOT.....


Monday, 22 February 2010

Time Out..

Being a parent is one of the most amazing achievements EVER.  However, I personally have not found it an easy job ...... Some parents make it look so easy, for me it hasn't been, BUT the one thing I do find very very easy is the LOVE that I have for my children - unconditional love... I would fight to the end of the earth for either one of them.

On this subject {LOVE} my Husband bought me as my Christmas gift a "treat" {what turned out to be a very expensive treat that we can ill afford right now} but a treat that he just knew I would LOVE.

So this weekend just past we used my Christmas present and in doing that also had some TIME OUT.  Or should I be saying some time for EACH OTHER which is something we have forgot to do these past few years.

On Saturday morning we travelled down to London via train {first class}

Checked in to a very plush {expensive} hotel in the heart of the West End

Had a nice meal with the stars at Planet Hollywood

Went to The Lyceum Theatre to see the show LION KING {which was amazing}

Had an unbroken / undisturbed nights sleep with NO children in between us!!  A queen size bed just to the two of us - bliss.....

Had a lovely breakfast {with no dishes to sort afterwards!!}

Visited the stars at Madame Tussauds wax museum

Did a little shopping around Covent Gardens

Then headed back home via the train {again first class}

Don't get me wrong we missed the children tremendously, as I'm sure they did us {not a chance too much fun with Gaga & Gamma!!} but it was lovely to remember the LOVE we have for each other, the love that for some time has been buried under the busy world of "special needs", hospitals and appointments!!

{It was nice to laugh and have fun again together!!}

Sunday, 14 February 2010

It hurts like hell :>(

When we received Emilys diagnosis I can vividly recall our conversation with our Genetist.  I can remember saying to her that with Emily being so young we/she could still get away with her disabilities as she was still like a "toddler" and people would not judge her for not speaking or for tumbling alot, as that is what "normal" toddlers are like anyway.  I recall voicing my concerns that as she got older her disabilities would become more obvious and would take over her "cuteness" of just being a delayed toddler...

I'm starting to see this is beginning to happen now - AND IT HURTS LIKE HELL.

I have noticed that children her same age DO see her as different and not all children know how to deal with this - so she is excluded by some.  I don't blame those children of course, it doesn't make them "not nice" children - at the end of the day Emily IS different to them and they will find it hard in their own little minds to make sense of why Emily cannot do the things that they can do so easily ~ like talk, draw and paint without a grown-up helping, dance, sing, go to the toilet, take off & put on her own coat and countless other things - the list would go on and on......

Only this morning Joshua (her big brother - age 6 1/2) came down the stairs and said to me ~ "Mum I have had a brilliant dream, Emily was talking and playing just like me!!"


I do try to put a smile on my face most of the time but it doesn't mean that I'm coping with Emilys diagnosis. I have fears that only parents of a special need child would ever understand.  Most days something hits me...... it may just be an old dear asking Emily her name of which I have to answer for her, it may be seeing another child looking at Emily as if she is odd, it may be party invitiations being passed about of which Emily is not invited, it may be the frustration of trying to sort out appointments with speech & language therapists the list does go on.

Most days there is something - THAT HURTS LIKE HELL...

Tuesday, 9 February 2010

Calling all teachers!!


Reading, writing and computing are not really "the basics"; they require that the brain process very detailed sensations and engage in precise motor and mental responses.  The visual system must distinguish the very small differences among letters of the alphabet, numbers and punctuation marks.  The child must have good space perception to see the difference between 41 and 14 or between was and saw.  His cerebral cortex must process the visual input according to spelling and grammatical rules that are both arbitrary and variable.  For the cortex to do this, all the parts of the brain that deal with language must communicate with all the parts that deal with visual perception and memory.  Writing is even more complicated, for in addition to all of the above, the brain must process hand and finger sensations, compare them with memories of how the hands and fingers are supposed to feel when they write, and then organize the muscle contractions that move the pencil.
None of these brain functions can work well if the brain cannot receive and process sensations from movement and gravity.  If a child has a vestibular disorder, many of the sensorimotor patterns in his brain will be disorganized, and he will have no way to remember what a printed word means or how to write that word himself.  The cruelest thing anyone can say to a child with a learning disability is "You could do it if only you would try!"  How can a child read if he can't even connect what he sees with what he hears?  How can he write his name if he has to concentrate on keeping himself in his chair?  These sensorimotor abilities are the real "basics," and learning problems will continue until more attention is given to their development.  Some children have acquired the basics through normal development, and they are ready to learn to read at 5 or 6 years of age; but many other children have not been able to master the basics because of a neurological irregularity.  To try to teach them to read at age 6 is to invite failure and misery for the child.  The child usually strikes back and is then considered a behavior problem.

Did you find this interesting reading and sound familiar........

This is just a very very tiny paragraph from an amazing book I am reading at the moment ~ I personally feel every educational professional {from Heads to teaching assistants and most definately SENCOs} should read it - it would probably answer a lot of questions and solve a lot of problems within schools.  The label "naughty" child should not exist and it wouldn't if more educational settings understood Sensory Integration Dysfunction / Sensory Processing Disorder OR took it seriously!

There any many many books on this subject available so there are no excuses but the one I am reading is SENSORY INTEGRATION AND THE CHILD BY A. JEAN AYRES (understanding hidden sensory challenges).

Tuesday, 2 February 2010

Just for Fun ?

Now I agree ~ Emily looks happy and as if this is "Just for Fun"

BUT, actually this is all part of her therapy.... which we do at home daily with her.

Since Christmas every Sunday we take Emily to a private therapy centre, to work on her sensory integration and she loves it..........

Is it worth the money, time and effort  ??


In the month that Emily has been attending these sessions she is doing less self stimulating behaviour and has actually come out with a few more words.....

Get this ~ only yesterday at her mainstream pre-school she actually showed interest in letter sounds and clearly did "B" and "C K".

Doesn't sound like a great achievement to some BUT to us THIS IS MASSIVE ~ well done our little princess x