Monday, 24 August 2015

We Three Teds

'Three teds (Dotty the Cat, Olive the Lion and Frank the Monkey)  travelling the world visiting real families who want to share their lives - each is lucky to love a person with Down Syndrome'...

Our visit from Dotty the Cat coincided with a visit from some special friends…

Having Ella and her extra chromosome has always meant we have met some very special people that we wouldn’t otherwise have in our lives.  When Future of Down’s was first set up in 2011, there was no facebook page, just an online forum where parents and families could go to discuss anything and everything.  

It was during the first few weeks of being on the forum and reading posts that I came to read Rachel’s story.  And it was so very similar to mine.  Her daughter Florence was born six days before my daughter Ella.  Both had cardiac defects and feeding problems and both our girls were PEG fed.  I can’t tell you how wonderful it felt to have ‘met’ someone else who was going through what we were.

Fastforward to today and we have helped each other through uncertain times, surgeries, feeding issues and hospital admissions.  We send birthday presents and Christmas cards and the facebook message between us is 4 years old and could quite easily be turned into a novel! It’s been a running joke for a while that we would have to meet before our little ladies started school.  

So finally, this July (just 6 weeks before school starts) we managed it!

My mum bought us tickets to go and see ‘The tale of Mr Tumble’ in the Manchester International Festival as part of our Christmas present.  Rachel managed to get tickets not only for the same performance but also bagged the seats next to us.  She and Florence arrived at our house on the Satruday afternoon, stayed over and then we headed into Manchester on the tram to watch the Sunday morning performance.  

A thoroughly lovely weekend and so special to meet someone in the flesh after being friends for 4 years.  And lovely that we had a Ted to share it with too.

And Rachel, thank you for a lovely weekend and for all your words of encouragement and support over the last four years, lets not leave it so long til next time! Xxx

Sunday, 2 August 2015

Runner bean

Ella very much lives for the moment...

I love that about her, but it does bring with it certain challenges.  And this is in no way meant to be a negative post, just an honest one.

I am finding it increasingly difficult to go out with both the girls on my own.  Ella can be unpredictable, refuse to walk or just want to be carried - all of these scenarios are arduous due to her age and size and not at all easy when you've only got one pair of hands and a toddler in tow too.

When she does walk, it can also be difficult.  She will sit down if she's tired or sees something on the floor that's caught her eye that she wants to play with, or just because she wants to.  Or, she will just point blank refuse to move.  If she's run on ahead, all I see is every potential danger in the environment around us - she's really fast if she decides to change direction or go somewhere she shouldn't (and all with no warning).  A gap in the hedge along the path, steep edges, steps, streams/water in general, other people.  I just can't seem to switch off and enjoy a day out - I'm always on my guard anticipating all the possible dangers and at the moment just the mere thought of a day out can make me stressed and anxious.  I know it's going to be hard work. I feel I have to be her eyes and ears, anticipate the consequences of her actions, keep her safe and a lot of the time I end up being her legs too (my poor back!).

We've had one incident where we were sat outside a cafe with friends, on a busy street.  Ella was sat on her chair, drinking her hot chocolate and all of a sudden, in a split second got off her chair and ran. No warning, no hesitation.  Ian ran straight after her and luckily for whatever reason she ran down the pavement instead of straight into the road.  It's the 'what if's' that stay with me from that day, not what did happen.  She was ok but we had no idea how to tell her what she did was wrong and she couldn't tell us why she did it.

I still can't get over how quick she can be.  When she decides to change direction, run off the wrong way or back the way we've just come it all happens in a micro second and has several consequences.  I a) have to leave Lucy and ask her to stay put as I run after Ella (which thankfully, most of the time she does) b) we probably cover twice as much ground as we would have if Ella had stayed on track so c) running/walking further than necessary makes Ella tired, less likely to finish said walk and so ends up being carried or in the buggy meaning poor tired Lucy has to walk/go on the buggyboard.

And I am aware that I place a lot of responsibility on Lucy as a (just) 2 year old.  I see that her experience of days out are sometimes limited by her sister. Lucy sees me get cross/upset with Ella or a situation, she gets less attention if I'm on my own with them as Ella needs more or ends up relegated to the buggy so I know she is safe if I have to sort out Ella.  We also end up cutting days short as I end up physically and emotionally exhausted if Ella is being a monkey.

We recently went to visit Ian's work.  Both girls got dressed up in their flight suits, daddy in his and we ventured up onto the helipad of The Royal London Hospital to see the helicopter.  It was a sunny, clear but unfortunately very windy day and as soon as we were on the exposed helipad, Ella went into meltdown and kept asking to go home.  She didn't want to sit in the helicopter, be with daddy, speak to the firemen.  She was upset and didn't like it. She just didn't want to be there.  I had to retreat with her down the exit ramp while Lucy enjoyed sitting in the helicopter.  I couldn't settle her or calm her so we all went inside.  Once calmed down and with a snack I was talking to both girls - 'it was too much for you up there wasn't it Ella, you didn't like it did you?' at which point Lucy pipes up with a pouty face 'I liked it'.  She was very aware that we'd had to come in because of Ella and it was then that I realised she understands a lot more than we give her credit for.  She had a great time charming the firemen, being a helicopter pilot and I'm sure there would be a job for her in  a few years if she wanted one!  We both felt guilty for her, but I was happy she had got some time to enjoy the helicopter even if it was cut short.

For the rest of the time in London which included walking on busy pavements, standing patiently in a queue, a boat ride and negotiating the tube Ella was fantastic.  She listened, walked fairly well when she had to and was careful and safe on the stairs/escalators on the tube.  It also helped that Ian was there as physical and emotional help - it makes a huge difference.  I know Ella can walk well, follow instructions, you just never know when she will do it (and sod's law will dictate that she will be mostly well behaved when daddy/another adult is along to help)!

Don't get me wrong, the odd day out with both girls by myself I could probably manage.  But I'm tired - physically, mentally and emotionally.  Ian has been working away for a year now and finally comes home for good next week (yay!).  He's been home every 7-10 days on average and not home for long stretches very often.  I've had a year of being pretty much a single parent - I don't know how people do it full-time, you have my complete admiration.  The last year has taken a lot out of me.

The relief of getting to work (and on time) for every 7.30 am handover over the last year has been immense.  As someone in the room would say 'I'm tired this morning' I'd think you're tired?! I've been up since 5.30am, got two small children up, dressed and out of the house for 6.50am - I've done a days work already.  And then I'll work my shift, go home and do it all again before bedtime. And the same again tomorrow. I've felt like I've been on a roller coaster that you're not allowed to get off and that never stops.  My coping mechanisms have been stretched to their limits and my anxiety has gone into over drive - hence my over thinking every little thing and getting stressed so easily.  I can't say this past year has been much fun from my perspective but I know it has been worth it for Ian which I can live with  (I'm cashing in my year away from home when we have two hormonal teenage girls in the house ;-) ).  We now have the task of adjusting to life together again and giving the girls more predictability, routine and stability.  All needed, as Ella is due to start Primary school in a few weeks time.  The next chapter is about to begin.  Until then, I'm looking forward to my days with just Ella when Lucy is at nursery = days I can plan that I know she will enjoy and that I will manage too. Sorry for the long post, hope that explains some of my hesitation or declining of days out recently. Thank you to those who have helped me out on days out too xx

Photo credit ~ Laura Limer

 Happy summer everyone. More posts soon on the end of nursery, special friends and Mr Tumble xx

Tuesday, 23 June 2015

Proud Moments - June 2015

There's a lovely little thing that happens every month in the 'Future of Downs' Facebook group. 

We celebrate our children's milestones and share what's made us proud. We do this on the 21st to represent the three copies of chromosome 21 present in Down's syndrome.And there's no such thing as an achievement too small. 
There's a whole lot of love and pride bursting from the members every month - and quite rightly! 
Proud moments happen everyday.  I'll be sharing ours on the 21st of each month. 

Earlier this month, we found out that Ella needs glasses. We've known she would end up with them one day as both Ian and I wear them. At her last eye appointment the decision was made to start her wearing them now so we've got some time to get her used to them before she starts school in September.  The glasses she's been prescribed are bi-focals which are recommended for children with Down's syndrome. She will take time to adjust to them and may be a little more clumsy while she gets used to wearing them.

I'm glad we have time for her to adjust to them as she's not exactly keen! She's wearing them little and often for now and hands them back after a few minutes with an added 'don't like it'! Nursery have been great at getting her to wear them too.

She looks super grown up and cute in them though and we will keep on going with them. I am sure by the time she starts school she will be wearing them most of the time.

In other news, her speech continues to improve and she's suddenly got her head around using you, me, yours and mine correctly. And both girls and Ian made me very proud at our friends wedding this last weekend. Ian was one of the best men and looked super smart in his Father's Day present (new suit!). And I had several lovely compliments on both girls from other wedding guests which was lovely to hear.

Sunday, 7 June 2015

Sliding Doors

These are my two babies at their 20 week scans...

Look very similar, don't they?

Both loved, wanted and unique.  However, one of them is deemed by medicine and society to be less worthy of life...

I've wanted to add my thoughts on the recent developments relating to the non-invasive pre-natal testing for Down's Syndrome.  I've just not been sure how.  There are so many well written blogs and articles on the subject and a lot of what I am thinking and feeling has already been said by somebody else.

A test that promises a 99% accuracy of detecting a chromosomal abnormality in an unborn baby with no risk of miscarriage. What's not to like about that?  

We all make decisions every single day of our lives.  What to eat for breakfast? What to watch on TV? Where to go on holiday?  On the surface, they are all small and insignificant choices we make without even thinking about it.  

But what if the next choice you make or decision you take changes your life? Choosing Marbella for your holiday instead of Rome and meeting the love of your life, choosing redundancy only to land your dream job weeks later.  There are also the choices we make or events that happen that we then don't have any control over. Missing your train or taking a wrong turn may lead you somewhere new or unexpected 

These defining events happen to all of us throughout our lives. It's usually with the benefit of hindsight that allows us to single out the choices we made or an event that led us to where we are and who we are today.  To look back and see in black and white that fork in the road - the path you chose versus the path you could have taken...

There was a decision I made, around this time 5 years ago.  I call it my 'Sliding Doors' moment. A decision I can now say altered the course of my life and our family's life. 

In a room with a midwife, about 12 weeks pregnant I was asked if I wanted the blood test that screened for Down's Syndrome.  I was 28, healthy and had no reason to think I was 'at risk' of having a baby with any problems - besides, Down's Syndrome happened to older women, right?  

I politely declined the test and didn't really think any more about it.  At the time, the test was a stand alone option where I was having my ante-natal care.  The nuchal translucency test now used in conjunction with the blood test as standard was then only offered to women over the age of 35.  There was no discussion with the midwife, she didn't explain my 'risks' or give me any further information about the testing or about any of the chromosomal abnormalities the test would look for.  With hindsight if I had been given more information about the tests, I may have decided to have them.  

And with the results of those tests, I hand on heart do not know what I would have done.  

I am so grateful now that I never had that information before Ella was born.  It is well reported how women are not being given the information and advice they need to make an informed choice after receiving a positive diagnosis during pregnancy. Data suggests that a massive 92% of women who find out their unborn child has Down's Syndrome go on to abort their pregnancies.  

A lot of the blame for this lies with the medical professionals who are 'caring' for these women and some of the blame with the way society as a whole views and portrays disability. So much more should be being done to educate staff, challenge current views and change the culture within the NHS towards women given a high risk screening result or a positive amnio/CVS result for Down's Syndrome.  There is a lack of understanding of what Down's Syndrome is, negative and false information being offered to women and very little information given as to where they can gain more support or advice in order to make an informed choice.   I also know parents who have been given a positive amnio result and been offered a slot for termination in the same sentence. 

From a purely selfish viewpoint, I am glad these more accurate, non-invasive tests have been developed.  After having Ella we were told our chance of having another child with a chromosomal abnormality was 1:100 (about ten times higher for another woman my age).  

I knew any decision I would  have to make in the future regarding pre-natal testing would be based upon how I felt at that time.  When I found myself pregnant with Lucy, I knew that I had to know one way or the other so I could feel more at ease during my pregnancy and know what to expect. I had the triple test which came back as 1:330 so decided to have an amniocentesis - with all the worry and guilt that carried with it.  It was an awful period of time and one that, thanks to these new tests I won't have to put myself or Ian through again. 

For women in my position, the development of these tests means we no longer have to put our unborn child at risk to get a definitive result. 

A small silver lining to the black storm cloud these tests have created. 

Monday, 1 June 2015

The 'Magic'

A couple of years ago, I nursed a lovely old lady. I'd not met her before and while helping her to have a wash, we got talking about her and her family. She told me about her husband, their two grown up sons and that her oldest son was born with Downs Syndrome. 

We talked a bit more and she asked me if I had any children. I told her I had a little girl called Ella who was two and that she too has Down's syndrome.

I'll never forget her reply, she took my hand, looked at me with a big smile and without hesitation said one word...


I knew exactly what she meant, but I couldn't even begin to try and define or explain it to you. It comes from a shared experience, an unspoken bond. A complete understanding without the need for words or explanations.
I met her son on several occasions during her stay with us and was inspired by their story - so many children with disabilities born in his generation were hidden away or given up at birth by their parents because that's what they were told to do. This family had never seen that as an option and their eldest son had been loved and raised by them and given the same opportunities as his younger brother.  The lady died some time later in a hospice but I still think of her and her family often and wonder how her son is getting on.

I Wish there was some way I could bottle up and sell the magic that is having Ella in our lives. So everyone had the opportunity to experience it.

There'd be a disclaimer though... With that magic, comes emotional, physical and mental turmoil on a daily basis! Well, not all the time but we've certainly had a challenging time of late.

She's pushed me to my limits over the last few weeks - frustrated me with her defiance/reluctance to do things, worried me when she was ill and she's constantly wanting my attention or supervision - I hear 'mummy' around 243,000 times a day. And night. Our sleep is disrupted and she often ends up in bed with me in the early hours. 

When she's challenging me, It makes me feel I'm not doing enough for her. My overriding fear is that I'm failing her - by not spending enough time with her, by going to work, by having to divide my attention between her and her little sister, both with different needs and expectations of me. And a million and one other reasons too. 

And then in and amongst the frustrations, tears (mostly mine) and chaos come those little moments of magic - an unexpected hug, her smile, a new word, singing 'Let it Go' with her sister in the back of the car, trying to ride her scooter...
 or just a selfie with mummy xx

This post was subsequently published on special needs site 'The Mighty' and can be read here

Monday, 20 April 2015

The language of life

I often wish I could get inside Ella's head...  

I wonder what the world is like from her perspective, what she sees, how she thinks and how she feels.  

I've had a challenging time with her recently - she's been hard to please with every question I ask answered with a defiant 'No!' She's also been getting easily frustrated which comes across as loud shouts or tears.  And I don't know what the matter is because she doesn't have the expressive language to tell me.     

It's only since having Lucy that I realise what we miss out on knowing about Ella and her experience of life.  Not yet two, Lucy gives us a running commentary on her day from the minute she wakes up to the minute she goes to sleep at night. How she feels, what she can see, what she's doing, what she's done, what she's going to do etc.  She can tell me what she's bumped when she's crying or a story about 'daddy and Ella and Lucy and mummy and granny and Elmo cat go bounce on the trampoline!'.  

I know what Lucy finds funny, because she tells me and I know all her little quirks because she announces them like royal decrees... 
'Lulu don't want a blanket' - she won't sleep with any covers on after decreeing one evening that 'don't want sleeping bag mummy' and that 'Lucy have pillow in cot now'
'Lulu have 2 dummies' - she now has to have two dummies on her person at all times (when I asked why she replied 'that's better')

Lucy's 'birthday cake' complete with candles
Ella is a brilliant communicator, don't get me wrong.  Despite all the challenges she faces she talks, signs and can tell me most of her wants and needs.  She can follow basic instruction, put a simple sentence together but as has always been the case, she understands far more than she can verbally communicate which I think is where her current frustrations are coming from.  She struggles socially to engage with other children as their spoken language and ability to communicate with one another means she often gets left behind. 

Having Lucy around is helping with this and Ian (who is away a lot) notices the improvements in Ella's speech every time he is home so I know she is improving all the time. I am aware that her speech is already good. As it continues to steadily improve it will bring along with it other areas of her development like her social skills, her ability to express herself and hopefully diminish the frustrations she is having at the moment.

Just this evening Ella said 'What do we have here?' when I put her plate in front of her at teatime (I did laugh - and it was shepherds pie if you're wondering!). That's a 5 word sentence said correctly in context but one I know she has heard somewhere and is copying as a full phrase and not as separate words (she is only putting a maximum of 3-4 words together at the moment).    

For now, I'll have to carry on wondering what goes on in that defiant, beautiful, determined head of hers.  

Some day soon, I'm sure she will be telling me herself xx

Friday, 17 April 2015

School and the EHCP

As with a lot of families across the country, this week we received our offer of a place at Primary School for Ella.  We did our research and ended up choosing our local, mainstream school that we live in the catchment area for.  We liked the staff, the atmosphere and the size of the school - not too big that Ella could be 'lost' among her peers and somewhere we feel she will be able to flourish given the support she needs.  They also have a child with Down's Syndrome in reception at the moment which helped us in our decision.    It's the school we would have chosen to send our children to, whatever their needs and will also be where we want Lucy to go when it's her turn for school in a couple of years time.  Being that it was the one and only school we had applied for I am really pleased that she has been offered a place there *big sigh of relief*!

For a child with Special Educational Needs, being offered a place for your child at your preferred school is the easy bit.  We now have the hard work of reading the draft Education, Health and Care Plan (EHCP - which has replaced the old 'statement' of educational needs), ensuring it has all the information relevant to Ella, what her provision at school should be, who will provide it and when. Then we get the chance to amend the document and discuss it with a local 'Assessment and Review Officer' at a meeting yet to be arranged.  It's a lengthy document too so lots of homework for me to do.  I'm very aware that it's the most important document relating to Ella that I've ever had to read and act upon and that it has a massive bearing upon her education from September onwards.  

The EHCP is a legal document that came into force last September as a change initiated by The Children and Families Act (2014). All children currently with a Statement of Educational Needs are being changed over to this new document.  For children, such as Ella starting school this September they are the first ones to go through this new process from the beginning, so it's new to everyone involved.  On the whole, our experience so far has been pretty painless although I know the same can't be said for all families going through this process at the moment. I think we have Ella's current nursery to thank for the smooth process - they have been very proactive at each stage and already have a good working knowledge of the new documentation despite it being so recently introduced.  The process seems to differ so much depending upon where you live, where your child is currently placed and whether you have access to other agencies to help with the process or getting your head around the enormity of it all.  

I can personally recommend IPSEA (Independent Parent Special Education Advice), speaking with the SENCO (Special Education Needs Co-Ordinator) at your chosen school or contacting independent supporters (agencies there to provide advice and support to parents through the EHCP process) if you need more help and support with understanding the process or help reading and amending the document to ensure it has everything you think it needs to have in it.

Everyone involved in a child's care has the opportunity to contribute to the EHCP document. For Ella, this has included her paediatrician, speech therapist, educational psychologist, sensory support service and her current nursery.  They have provided their input so that all her health and learning needs can be identified and provision can be put in place to allow Ella to meet her potential through the outcomes stated in the plan.  

It's not just the professionals that have the chance to input to the EHCP.  At the front of the document is a 'one page profile' where us as parents get the chance to express who Ella is, what is important to her, her likes and dislikes and what she enjoys and what we feel her needs are.  

Once she is old enough to do this herself, it will be her 'voice' that opens the document. For now, the job of sharing Ella's character, advocating for her needs and conveying how amazingly fabulous she is with people that don't know her comes down to Ian and I (her nursery teacher also added her observations and knowledge of Ella here too which importantly added another dimension as to how others see her and what they perceive her needs to be). Quite a responsibility and one I hope we have got right as it forms the cornerstone of what her needs are and therefore what her help and support will be.  Here are some of the statements from her one page profile to give you an idea...
  • Eager to Learn
  • Being independent is important to Ella - she knows her own mind
  • Caring big sister
  • Family is important to Ella
  • Having things modelled to her so she can learn
  • Important to keep Ella safe as she is vulnerable
  • loves messy play
  • Enjoys being outside  
  • Understands more than she can say, so she sometimes gets frustrated

Ella is of course oblivious to everything that is going on.  We will start to prepare her for her new school over the next couple of months with some organised visits so she knows the building and can meet her teacher and other people who will be involved in her life at her new school.  Luckily, her friend Daniel who also has Down's Syndrome has also been offered a place at the same school so that's one face she'll definitely know!

One of my worries when we were told Ella had Down's Syndrome was that she wouldn't be able to go to a 'normal' school.  My inexperience and preconceptions meant I wasn't aware that most children with DS are taught in mainstream schools, that they have access to the same opportunities as other children and are valued, included and supported to reach their potential - whatever that may be.   

I am excited and proud of her at the start of her school journey. There is so much she will do and learn and I can't wait to watch her develop and grow over the years to come.  

And just by being there, she and Daniel will teach too. Teach the value of inclusion, patience, understanding, and acceptance.  

School Ella Bean??! Stop growing up so fast please xx

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