I have been so proud of Seren over the last few months – having Down’s syndrome doesn’t stop her from doing anything, it just takes her a bit more practice and effort to achieve her goals. Her determination is such an asset to her development and over the last months we have seen some amazing new skills emerging! She will be 3 years and 6 months old next week.
Drinking out of an open cup – this is totally mastered now and she is drinking like a big girl!! She is so proud of herself, she is drinking loads more than ever which has played havoc with her potty training….
Potty training – she has not done a poo in her nappy for weeks and weeks and weeks – although she did have an accident when she had a tummy bug but that doesn’t count. Wee is more problematic – at home she goes on the loo, but she has too many accidents when we are out so I leave a nappy on her and she goes on a loo when I do. I am probably going to continue with this slowly-slowly method until Violet potty trains next summer then I will get them both done at the same time.
Talking – we took the plunge and have invested in private speech and language and what a difference its making!! She is really trying with her speech sounds and is coming on (slowly but surely, in her own time!). We love hearing her little voice and seeing how proud she is of herself.
Fear – I took her to our local fireworks display and she HATED it. So much so that she has now developed a fear of the dark (outside) and constantly signs “firework” and “scared”. I have to reassure her all the time that there wont be any fireworks!!
Shoes – Seren will only wear boots or wellies at the minute. Why? Because she can put them on and take them off all by herself and she likes that level of independence!
Getting dressed / undressed – wow, is she trying! I am setting clothes up for her the right way round etc and we are working on putting them on. She LOVES trying and I am sure we will get there eventually. I love that she is so determined.
Counting – bearing in mind she can’t talk, she is beginning to understand the concept of counting and even tries to say a couple of numbers. This is a fantastic development for her!
Reading – I will be pushing her reading skills in the next few months before she starts school in September 2014. I am considering delaying her start, and perhaps letting her go through another year of preschool with a view to starting receptions class in 2015, but its such a tough decision. I would be interested to hear from anyone who has delayed school start for their child (please contact me).
Single bed – Seren has moved from her cotbed in to a single bed!!! It has been an easier transition than we could ever have hoped for!
Walking distances / road safety – slowly but surely she is managing longer distances safely. She hates going in the pushchair but she is still so unpredictable that I have to be 100% attentive to her because she would still walk in to the road / run off if I wasn’t watching.
I looked back at an old family video of Seren this time last year and marveled at how little she has grown since then!! (Click here for the video). She is 3yrs6mths old next week and is only just in 18-24 month clothes. She will be 4ft 7inches when she is fully grown, so she will be pint sized!! Just as well that she has such a huge character.
We have been to the Down’s syndrome Association and the Lejeune Clinic for assessments, and both have been amazing – of course Seren sat and concentrated brilliantly on both days, sitting for up to an hour being put through her paces with puzzles, instructions, word matching etc… I have been so proud of her. I find myself reflecting on how society is moving towards “eradicating” Down’s syndrome thanks to Professor Nicolaides and how my life without Seren would be so much worse than it is with her in our lives. I think of all the families that will miss out because of the way medical professionals deliver a diagnosis – Professor Nicolaides tells parents how awful life would be with a “Down’s baby” and then if he doesn’t put them off enough, he goes on to say how awful it would be to have to look after a “Down’s adult”. Oh my. I wonder if he has ever spoken to any families who actually have family members with Down’s syndrome? I think he would struggle to put in to reality the negativity that he pedals out to the poor women he is trying to encourage towards abortion. The Down’s syndrome Assocaition have a campaign running called “Tell it Right” which aims to train medical professionals to give a more balanced and less negative view of Down’s syndrome. After I was given my “high risk” blood results over the phone, I was pushed in to having an amnio which I didn’t want. The lady on the phone was so patronising and told me to “speak to your husband, I will keep the appointment open for you”. I kept telling her I didn’t want it and she kept phoning me to persuade me to go and have it – I didn’t go. Unfortunately this is the same at every stage of the diagnosis and the majority of professionals seem to assume that everyone should follow a path to termination when that is definitely not what everyone wants. Luckily I hear some wonderful stories of amazing health care professionals who get it right – and I think it leaves all families (no matter what their decision) feeling less traumatised by the process if they don’t have to fight either way to make their choices or defend their decision.
There is a new campaign starting!! It’s called Lose the Label. It has been started by a mum, who is pushing “person first language”. This is so important. Our kids should be referred to as children first… they are not “Down’s children”, they HAVE Down’s syndrome. Seren has featured on one of the posters, and it was printed in Best Magazine a couple of weeks ago. She has also been “tweeted” by a modelling agency in London called BizzyKidz, who are supporting the use of children with disabilities in advertising.
Down’s vs Down syndrome – I use “Down’s syndrome” simply because our national Charity does. I have no preference either way and sometimes say “Down syndrome”. The argument is that John Langdon Down discovered the syndrome, he didn’t have it himself. In most other English speaking countries, they use Down syndrome. I am not bothered what way it is said, I just want people to know that Seren HAS Down’s syndrome – just like the lovely campaign poster says!
Christmas is fast approaching and we are moving in with my dad for the week over Christmas. This will be the first Christmas since my mum passed away earlier this year and the only thing that is going to make me enjoy the day is my family. It will be horrendous without her, our family Christmases were steeped in tradition and so my dad has made the decision for us to go out for our Christmas dinner on Christmas day. It is a break from everything we would “normally” do and its the right thing for us. Staying at home all day would be too much to bear, her absence would consume us. Christmas day will be 10 months to the day since she was taken from us. The pain isn’t any less, the grief hasn’t gone away… The biggest realisation has hit me – that time is simply not going to heal this. Time just carries on and I have no choice but to get on with it. I carry the pain with me in every hour of every day. I wake up thinking about her and I go to sleep thinking about her. My lovely Ava talks about her often and we love sharing memories. As for forgiving the paramedic? I am no closer to being able to do this than I was 6 months ago. I find myself hating him a bit more as time goes by, which is totally unhelpful. I wish he could see what he has done to my family and I often wonder if he regrets being the cause of her death. I am sure he must do, but I would still like to know. She would have been 64 on the 18th of December.
I am grateful every day for my girls, they are my life