Halloweens Gone By.....

Well it's nearly that time of the year again, when our children love to get dressed up!!!  Well in my case Emily gets dressed up as Joshua doesn't like to anymore.......

So I thought I would post some piccies of Halloweens gone by....

(2006 - Joshua Age 3 1/2 and Emily Age 11 mths)

                                     (2007 - Emily Age 23 months)                                                               (2007 - Joshua Age 4 1/2)

Last year Joshua decided he no longer wanted to dress up :-( ~ but still wanted his share of the candy!!!!!  So Emily did the hard work and Josh still got his share of sweets - typical man.....

(2008 - Emily nearly 3 years)

The children have been invited to a Halloween Party this year at one of Joshua's school friends - will post again after this event.

Holland......

Well many of you especially my facebook friends will already know, life has not been great for me emotionally this last week or so....... for no particular reason really...... just feeling "down in the dumps".  I suppose sometimes the future seems a scary place to consider even though Emily is doing amazingly well at the moment - these down periods just come from nowhere.

I know I will bounce right back again I always do......... I also know that my positiveness will re-appear....... I also know my feelings are pretty normal and any parent with a disabled / special need child will confirm that.

Which takes me to my heading of this post "Holland" - again most of the parents with special needs children will be VERY familiar with this poem, I couldn't have described the feeling any more accurately than the way this poem describes it...... please read, it's moving but oh boy so very true.....

Welcome to Holland

by Emily Pearl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared the unique experience to understand it, to imagine how it would feel.  It's like this:

When you are going to have a baby, it's like planning a fabulous vacation trip - to Italy.  You buy a bunch of guidebooks and make your wonderful plans.  The Coliseum, Michaelangelo's "David", The gondolas in Venice.  You may learn some handy phrases in Italian.  It's all very exciting.

After months of eager anticipation, the day finally arrives.  You pack your bags and off you go.  Several hours later, the plane lands.  The flight attendant comes and says "Welcome to Holland".  "Holland?" you say, "what do you mean, Holland?  I signed up for Italy, all my life I've dreamed of going to Italy".

But there's been a change in the flight plans.  They've landed in Holland and there you must stay.  The important thing is that they haven't taken you to a horrible, disgusting, filty place full of pestilence, famine and disease ~ it's just a different place.

So you must go out and buy new guidebooks.  You must learn a whole new language, and you will meet a whole new group of people you would never have met.  It's just a different place, it's slower-paced than Italy, less flashy than Italy.

But after you've been there a while and you catch your breath, you look around and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there.  And for the rest of your life, you will say, "Yes, that's where I was supposed to go, that's what I had planned".

And the pain of that will never, ever, ever go away, because the loss of that dream is a very significant loss.  But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

XXXXXXX

Fun at the Fair....

9th to 17th OCTOBER - HULL FAIR WEEK

We wasn't sure if Emily would cope with the noise, bright lights and the amount of people at Hull Fair this year as her "sensory" issues can still be quite unpredictable and sometimes extreme.  Without trying we wouldn't know and why should we just presume she doesn't want to be part of the fun ~ so on Saturday afternoon 17th October we went anyway with all intentions of having to come straight back home again...........

 

She didn't want to get out of her pram and kept putting her hand to her ear telling us it was noisy - but she's smiling and seems happy....

JOSHUA ON HOOK-a-DUCK {won a police set, he was very happy}

YEAH....... Emily on the Carousel {she LOVES horses}

It was a lovely family afternoon out and Emily did amazingly well and surprised us all ~ I am so very glad we let Emily do the deciding.........

Want to know more about the history of Hull Fair?  Click HERE

Epilepsy........

For those of you that haven't read our story on Emilys website HERE.... Emily was diagnosed with Epilepsy at 15 months old after many many prolonged tonic clonic seizures - many requiring admission to the Intensive Care Unit and/or High Dependency Unit @ The Hull Royal Infirmary - those where scary months when I look back.......

Thankfully things began to settle down so Emily was weaned off one of her medications (Clobazam) by the age of 2 1/2 years mainly because her Neurologist felt it was causing some adverse side effects to her behaviour. It was a scary time for us really as no way did we want to risk putting her (or ourselves) back through what we had been through when her seizures where regular!!! August last year (2008) we had reached a year since her last seizure, when unfortunately she had a bang to the head which made her fit ~ her Neurologist felt it was probably due to a breath holding episode but slightly upped her Epilim just incase.

Another year had passed by with nothing ~ or so we thought...... perhaps we have become a little too confident or even too laid back or maybe we were just expecting the same "tonic clonic" seizures that we had seen previously..........

SADLY ~ it appears that Emily is now having some seizure activity in the form of ABSENCES. Thankfully Emily has a super support worker at the playgroup that she attends, it was Siobhan that has brought this to our attention as she spotted the signs in one of Emilys sessions this week (thank you Siobhan). After speaking with Chris, our amazing Epilepsy Nurse, she confirmed that it does sound like what Siobhan has described is an Absence episode : (

Emilys Epilim medication has been upped a little ~ which we are hoping will put a stop to them.

Obviously I am sad and disappointed as yet again we had just reached a year mark, however I am more sad that on this occasion I failed our Daughter ~ why had we not noticed it happening.......

Once again thank you Siobhan xxxxx

Cardiologist....

Today was hospital appointment day......... a date on my calender that I haven't been looking forward to.

"Monday 12th October @ 1:30pm - Emily Cardiologist Appt (Dr Patel) Hulls Womens and Childrens hospital"

Dr Patel was lovely and explained everything as she did a full scan of Emilys heart ~ we are very very relieved to confirm that no abnormalities have been detected ~ another 17q trait can be crossed off the list for Emily - we feel fortunate and extremely lucky.

Glimpse of the future..

You may recall one of my previous blogs regarding the complex statementing process for children with special needs in the UK...... well I thought I would post an update...... give you a Glimpse of the future ~ well what the next 6 months entail anyway.

Last week we managed to hold a "meeting", it's easier to get everyone around a table to discuss such things opposed to lots of correspondence been sent here there and everywhere and still getting no results!!! 

In attendance:
Myself
Manager of Emilys current mainstream nursery
Manager of Pre-school Learning Alliance (whom provide Emily's support worker)
Senior Co-ordinator from the Parent Partnership
SEN Caseworker from the LEA
Deputy Head from our chosen Special School

I was very impressed........ and relieved......... and grateful for the result that we got.

As you may be aware we still don't really know in which direction we should go educationally for Emily - it's a difficult decision to make for any parent.  So we chose to go in an unusual direction, as in not the normal direction, we requested a "dual" placement initially to see if this will give us a better understanding of which way we should go.

Thankfully this is what we have achieved for her......... so from January 2010 Emily will continue her mainstream nursery with her support worker for 3 sessions per week and then will attend a special school for 2 sessions per week ~ exactly what we wanted.

We are very grateful to EVERYONE who has helped and supported us through this process. At times I'll be honest I felt like walking away from the whole thing but with patience and determination and communication we got there in the end!!

We are hoping that after a few months of doing the dual placement Emilys educational future may become more apparent more obvious to us ~ or this is our hope anyway xx