Monday, 30 July 2012

Choices

I don't feel I can ignore the recent media spotlight on Down's Syndrome.  It's in the papers, on TV, on my twitter feed, article comments, health websites.  The list goes on.    

Maybe I should be pleased that awareness is being raised, debates are happening and Down's Syndrome is being talked about and reaching people who may never have thought about it or understood it before. Personally, I'm not.  I feel that the media is intruding into my world and the picture it is painting to everyone is more 2 year old with a crayon than the 'Matisse' I see everyday.  Most of the articles or comments are ill-informed and are certainly not based upon fact, experience or understanding.  And Samantha Brick's comment about parents 'Disney-fying' DS was just so wrong on so many levels.  But I'm not giving that woman any more of my blog space.

The reason behind the attention appears to be two-fold.  The debate over women who have had IVF terminating pregnancies screened positive for DS and also the proposed improvements in pre-natal screening that essentially give women the opportunity to find out if their unborn child has Down's Syndrome earlier and less invasively.   

Screening available now is the Nuchal Translucency test and the triple blood test.  Results of these plus risk factors such as mothers age are put into a computer and a number is generated.  A number greater than 1:150 (as of October 2011) is deemed to be 'high risk'.  Women with a high risk result are then offered an amniocentesis.  The amnio provides an almost 100% certain result as to whether the baby has a chromosomal abnormality or not but is invasive and carries a miscarriage risk.  In hearing other mothers stories, an amnio result positive for DS is generally given in the same breath as the health professional asking about termination.  Some mothers choose to have the amnio so, either way, they are prepared for when the baby is born.  Some have the amnio because they don't want a child with an abnormality and they go on to terminate.  

Since having Ella, friends have spoken to me about this.  I have friends who have said that knowing Ella and what we have been through has shown them that Down's Syndrome is not to be feared.  Yes, it's tough but they feel better informed in making a decision about having a child with DS should it ever happen to them.  On the flip side I also have friends who have gone all out to ensure that their unborn babies don't have DS.  Knowing me age 28 have Ella made them seek out all the testing they could.

I am fine with both viewpoints, everybody is different and situations are different.  We are lucky enough to live in a society where we have access to screening tests and have the ability to choose what happens based on the results of those tests.  Whether that child has been naturally conceived or through IVF is another debate. There is also the reality that embryos can be screened for chromosomal abnormalities before they are even implanted.  So many ethical issues!

The worry that some have voiced is that with the improvements in pre-natal genetic testing we are slowly entering a world where no babies with DS will be born.  I disagree a little with this and go back to my point about having the right to choose.  Until they make the testing compulsory there will always be women (like me) who decline pre-natal testing. There will also always be parents who have an amnio and continue pregnancies knowing their baby will have DS.   

Out of Ella's peers - the 9 or 10 other families we know well - we were the only post-natal diagnosis (Some parents had amnio's and knew they were having a baby with Down's  Syndrome others knew they were high risk and declined the amnio). That says a lot.

For some people, having that knowledge won't change the outcome. No matter what those tests tell you, there will be a baby.  Maybe a perfect, healthy baby. Maybe a baby with DS.  A baby that will grow up happy and healthy.  A baby who is autistic, gets cancer, has an accident...  Nobody knows what will happen to their children and while ante-natal screening programmes have their place, they aren't for everyone.  They can't screen for everything  nor can they predict the future.

What does worry me is that if the numbers of babies born with DS decreases,  where does that leave funding, support and services for babies, children and adults with DS?  The whole debate over pre-natal screening opens many moral and ethical debates - too many to go into here.  It just seems a shame to screen for DS, not because it is the worst thing imaginable that can happen to someone, but because we can.  

All I know is that we have Ella, we love her to bits and we wouldn't change her for anything. Life is good, we are happy.  I still have bad days and worry that people will always see the Down's Syndrome before Ella and judge her based upon their misjudged pre-conceptions.  Life with Ella hasn't been easy and this isn't quite how I imagined motherhood to be.  

Despite all that, I will always be happy with the choices I made... 













If you would like to read more, here is the best article recently written about Down's Syndrome:

Are we stumbling towards a society with no children being born with down syndrome?






Friday, 27 July 2012

Involve me and I learn...

Last year we attended a pre-school special needs group run by our speech and language therapist and play specialist, specifically for children with Down's Syndrome. It was a chance to learn more about how children with Down's Syndrome understand the world around them and how we can provide the best learning experience for Ella.

When we started going, Ella was 4 months old. She slept through most of the first two sessions and we missed the third as she was having her heart surgery.  She was the youngest of the group, with the oldest being about 2.  I wondered what we would get out of the sessions with Ella being so young, but I think those of us with the very young babies will probably benefit the most from the sessions in the long run. We have been able to put into practice at an early stage all the tips for helping Ella to learn as much as possible.

Looking around the room, we were a pretty good representation of our society. The parents divided by so many factors; race, religion, culture, language and faith (to name but a few). However we were united, in this instance by the genetic make-up of our children, who despite sharing the same extra chromosome were all just as different as we are.  

Over the sessions we learnt several important tools when interacting with and developing our children. Pausing and pacing,  taking the lead, taking turns, hand-over-hand and signing.  

The importance of a sensory box for play and a song box were also introduced.  The sensory box (or, in our house a Roses tin..) was a favourite of Ella's for a long while and I still get it out now for her to play with.  The idea is to encourage tactile play and introduce little one to different materials, sounds and objects while using all their senses.  They are heavily advocated in play for children with additional needs but I think any child would enjoy having a sensory tin.  We rotated objects and added new things to keep Ella interested.  Things I included were:
  • beaded necklace
  • silk scarf
  • wooden peg
  • flashing ball
  • wooden rings
  • bells
  • shuttlecock
  • Feather
  • small piece of foil space blanket
  • Rattle
  • Rattan coaster
  • Ribbon
  • Washing up pad

I also added some 'objects for purpose' to help her learn what certain items are for:
  • phone
  • hair brush
  • spoon
  • cup
As well as the sensory tin, we started up a 'song box'.  It supports the understanding that children with Down's Syndrome are visual learners.  Each song has an object that represents it in the box.  The idea is that the child learns the association between a certain object and the song it links to.  They are then eventually able to ask for the song they want by choosing the correct object.  This is also an activity that Ella's nursery use successfully with all the children.  

The songs we have at the moment are:
  • If you're happy and you know it
  • One, two, three, four, five
  • Twinkle Twinkle
  • Baa baa black sheep
  • Incy wincy spider






The learning will never end, for Ella or for us.  Ella will be joining the 'opportunity group' at our local special needs nursery (Charnwood) from September which I am looking forward to.  

Happy weekend everyone xx

"Tell me and I forget.  
Teach me and I remember.  
Involve me and I learn."
Benjamin Franklin


Wednesday, 25 July 2012

The bean is back!

It's been a long week.  Ella has been poorly with a virus, unsettled and off her food. She wouldn't even eat a yoghurt (this has never happened before!).  You wouldn't believe so much snot could come out of a nose so small :-(   


Thankfully, the bean is back.  Smiling, demanding, pointing, talking, playing and generally getting up to no good (like pulling the 'n' key off the laptop so I have to press twice as hard for it to work - sorry for any that are missing!).  


As the weather has been good, she's had lots of trips out on her trike including an evening lap around the neighbourhood.   It's fast becoming part part of her bedtime routine.  


Baby girl loves cars.  Now she can say it, even better!  Car parks, walking along the road, parked cars, moving cars... you get the picture.  


Pointing out the (many) cars on her evening stroll

You'll often find her heading for the front door where she likes to sit on the doorstep and wave at traffic or standing in the window where she also gets a good view...



Keeping her occupied while she was poorly was a hard job, but a few things helped...






As the week went on (and with the help of some antibiotics) she gradually got better, started eating and misbehaving again...






We have also been getting some sneak previews into what I think may be the 'terrible two's'.  Fist clenching, red faced frustration and getting very upset very quickly.... She's scary!....  

But not all the time (yet)...




Friday, 13 July 2012

Little Chatterbox!

Ella has really turned into a little chatterbox, she's always chatting away.  I was thinking yesterday how well she has begun to communicate.  She attempts a lot of words, has words she says consistently but I don't know what she means and there are words that I have heard her say once or twice but are not yet consistent.  And on top of her words there are her signs too.  

I decided to write down all of Ella's signs, words and emerging words to see where she was up to.

So today, I unleashed my inner primary school teacher and transformed the glass double doors in our living room into a display of Ella's words and signs.  The words can be moved around as she progresses and new words can be added very easily....






I have also downloaded the DownsEd See & Learn resources so we can start using the  activities and flashcards to gain better insight into what Ella understands.  

For those of you also with young children with DS the DownsEd resources are currently free and you can download them here. I have heard on the grapevine that they will soon be charging for them but you can download and save the resources for a later date.  


Now, I can't have a post without Ella making an appearance, so here she is on her trampoline in the garden yesterday:




Happy weekend everyone xx

Friday, 6 July 2012

Dirty feet, ducks and angel hair

Ella continues to want to be mobile.  She loves being on her feet or crawling but she prefers to walk (holding onto our hands) more than anything else...  Unfortunately, this means she has very grubby feet due to our carpets needing a good clean after all the recent work...



We spent a few days at Granny Karens and Ella has become a little more confident with the cats... think she would have chased after them if she could! Unlike last time...












She's always on the go, and her language continues to develop.  She attempts words but can't say them properly yet.  So far we have car, zoom, duck, Ella, star and Rosie (her doll)...  

She also needs a haircut as her unruly, thick angelic curls are in need of taming (but not too much)!...





Baby girl loves her baths... She will ask for soap, rub her hands together and then wash her tummy.   She also likes throwing her ducks into the water....










We will hopefully have her little bedroom ready soon, I am just in the middle of painting, then we need a carpet and curtains and she'll have a new room!  

Happy weekend everyone xx


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