Or otherwise entitled…
Don’t even try and attempt to get home on the M6 (motorway) on a Friday night
Or…perhaps more obscurely entitled (but all will be revealed)…
I’m a great fan of research, especially since Hannah came into our lives. Although I completely acknowledge that research doesn’t always steer us in the right direction. Remember that time many years ago when we were told that eating tomatoes gave you cancer?…Hmmm….or that you just HAVE to eat your 5-a-day to stay remotely healthy…but then someone else came along and did some more ‘research’ and said that was probably total poppycock…or that running is really good for you…but someone else then says don’t run, walk instead.
It’s sometimes hard to know who or what to believe, isn’t it?
But we’ve all got to start from somewhere and, let’s face it, if we don’t have research, then we can’t get facts or conclusions on all manner of things.
Actually, I’d like to do a little bit of ‘research’ myself on…say…*stares dreamily into space*…Daniel Craig or Orlando Bloom or Bradley Cooper or Robert Downey Jnr or….whoops!…sorry, getting a bit carried away there.
I’m being silly, ignore me.
But seriously, given Hannah’s genetic syndrome is so rare, the more that everyone gets to know, the more we can all try to help her and others – both now and, perhaps, hopefully, in the future.
Now don’t get me wrong, I’m not a complete fan of all research. I do have my limits. I’m totally not OK with little beagle dogs wearing red lipstick and some fancy face cream (or worse) – all crammed together in a tiny laboratory cage – or any other of God’s living beings for that matter, being subjected to something very nasty, just to benefit us human lot.
That’s SO not ok.
But I’d better stop there on that one and jump straight off my high horse, before I ramble on and not focus on what I actually wanted to tell you about. As is often the case!
Although, my friend Kevin might disagree on the above (Kevin again – he who thinks I should be in a circus due to my ‘hirsutism’ – the cheeky devil!) and that’s all dependent on what his beagle – fondly and formerly named ‘Fat Bob’ – gets up to, as he’s rather keen on emptying his bladder on their lovely Persian rug (that’s Fat Bob, not Kevin!)…or anywhere else for that matter! I suspect Fat Bob may’ve been threatened with a little visit to ‘The lab’ on occasion.
Poor old lovely Fat Bob and his weak bladder.
But don’t worry pal, you’re going nowhere. We’ve got your back.
…and I know your daddy wouldn’t ever do that to you…he probably just mumbles it when he has to get the mop and bucket out.
But anyway, research can play a big, important part in all kinds of stuff, can’t it?
So, when I read that the Cerebra Centre for Neurodevelopmental Disorders (yeah, bit of a mouthful, I know) at the University of Birmingham were asking for people to take part in a research study, I knew just the little person, right here at Broccoli HQ, who could help out.
The study specifically looks at social cognition (cognition – a fancy word for ‘understanding’) in people diagnosed with Cornelia de Lange Syndrome – the syndrome that Hannah’s diagnosed with.
It’s hoped that by examining people’s ability to understand others’ thoughts and intentions, the information gathered will help further understanding of the social and communication development in people with this syndrome, and, maybe, hopefully, find ways of helping improve lives in the future.
So, we just had to offer our services.
After a quick email and…erm…a year later…whoopsy!… (it wasn’t their fault though – I had to cancel as my mum died a couple of days before we were due to take part in 2015) we locked the door at Broccoli HQ, jumped in the car and toddled on down to Birmingham – UK, not Alabama – just in case our lovely friends in the U.S. were wondering. Hello! *waves enthusiastically*
The journey down was fine. Hannah’s generally quite a good traveller too. But despite having Sat Nav and receiving brilliant written directions to the University, we got a teensy bit lost.
We weren’t far off though.
Hannah’s daddy was pretty grumpy by this point and was threatening to emulate ‘Fat Bob’ if we didn’t stop soon. So we stopped, did what we had to do (you don’t need me to get graphic, do you?) and then lovely Kat came to our rescue, found us floating around in Birmingham and took us where we needed to be i.e. at the University.
Kat (Katherine) is a Doctoral Researcher at the University and she was facilitating the study that day, with the help of Student Doctor Adam who was volunteering his services and has an interest in Hannah’s syndrome and there was Jon too.
Prior to going down to Birmingham I received lots of really useful written information about what to expect and then arranged a time to speak to Jon on the phone and, together, he and I completed a questionnaire, so the team got some understanding of how we roll here at Broccoli HQ prior to our arrival – By ‘roll’ I mean, how Hannah functions daily etc. It only took about 45 minutes and was really easy to do.
I’d also completed some other various paper questionnaires, which I provided to Kat on our arrival, alongside consent forms etc. and then it was time to play.
Hannah likes playing!
We weren’t rushed around to get things done either. Everything was at Hannah’s pace. Which, to be honest, was quite refreshing. Us Mama’s and Daddies and Special Children are often ushered hastily here, there and everywhere, with very little time to catch our breaths at many other appointments and such like – so this was nice and relaxed.
…and I think Hannah probably felt that too.
There weren’t any ‘risks’ to this study either – I wouldn’t have put her through it if there were, No, as far as Hannah was concerned, the day was filled with lots of fun (and a little bit of mayhem on her part – involving attempting to eat birthday candles, bubble mixture and play doh and throw herself backwards off a chair – the usual, daily stuff we’re used to – *sigh*) and fast paced ‘games’ and there was lots (and lots) of smiles and laughter.
Lovely Adam (student doctor) filmed Hannah’s goings on and the observations would then be checked for their accuracy with another researcher.
Everything was done properly and, at any time, we could’ve backed out. There was no pressure put on us whatsoever and all our questions were answered. Plus, it was SO nice to be around people who actually have some knowledge and experience of Hannah’s syndrome – they just ‘got’ her and her little idiosyncrasies AND, more importantly, despite this being research, she was treated like a little girl – exactly as she should be and deserves.
Only one of us could accompany Hannah during the studies – but that does actually make sense in order to avoid distractions. So, as usual, Hannah’s daddy nominated me, whilst he ate a packet of fruit gums, mooched around campus in the sunshine and went to a Museum. Thanks buddy!
(Although, I must say, I did also enjoy the day and found it really interesting)
Everything Hannah participated in was play-based (but with specific intent)…and she was a TOTAL superstar. As always, she really tried her hardest in everything she did and threw herself into the task at hand, PLUS she completed everything that was required to complete the study.
So proud of her.
Obviously, being there for several hours, we needed breaks in-between each individual study plus we stopped for lunch too. And, at times, during each bit, Hannah needed a little ‘run’ around, but thankfully that didn’t affect the study at all.
Now that we’re home, at some point soon, we’re also going to take a saliva sample with a non invasive swab kit. This will be used for genetic analysis and may identify the genetic variation important in understanding causes and consequences of CdLS.
…although I’m not holding my breath on getting a decent sample…she’s a tricky customer is my kid…and likes to chew EVERYTHING! so those swabs might get a bit chewed up.
Anyway, it’s anticipated the study will be completed by around September 2016, but even though that’s not too far off, don’t let that put you off getting in touch and taking part. If you or a loved one (no matter what age) is diagnosed with CdLS and you’d like to participate, then please contact Kat (Katherine Ellis) on 0121 414 2855 or email her at KRE061@bham.ac.uk and she’ll send you all the details and/or answer any queries you may have.
Plus, if you have anything additional you’d like to ask us (as participants) about the study, then please feel free to add in the comments box below.
So, to (almost) conclude, a jolly good day was had by all….especially Hannah. In fact, we hadn’t even reached the motorway to head back to Broccoli HQ before she was snoring contentedly! And we were more than happy to play our little part in helping to gather information, which could, hopefully, help Hannah and lots of other people in the future.
…although we did have a bit of a nightmare getting back to Broccoli HQ. Never, EVER, will we try to attempt the M6 motorway again…on a Friday night…AND on the last day of half term!
Nor will we, in desperation and with great angst at ensuring Hannah got to eat something as close to her usual tea time as possible (routines are important for us), stop off at a grotty service station in the future.
We’ve learned our lesson.
However, as a little aside to our day, we finally, FINALLY (hip hip hoorah!) got the information that (from Hannah being 2 weeks old) I’d always known….that she displays the characteristics of Autism. It didn’t come as a shock and wasn’t rocket science to ascertain this, but despite me rattling on about her little idiosyncrasies all these years and everyone rolling their eyes and dismissing me (pah! what do I know, I’m ONLY her mother!), no-one wanted to do anything about it – probably partly because of her syndrome and all its complications, but probably (I suspect) mostly due to the cost implications a diagnosis would have.
So someone listened (yay!) and then observed whilst using the appropriate assessment tools in line with NICE guidelines.
Phew!…it’s nice (and reassuring) to know that there ARE people out there who can be bothered.
Breathe in guys and mind your backs…Special Mama coming through (briskly and determinedly and NEVER to be messed with) with a VERY important piece of information and on a mission to make sure her baby gets ALL the right support she needs.
You have been warned! Just sayin’ *wink*
N.B. Not everyone with CdLS is on the Spectrum, like Hannah…but may display similar behaviours and more research is needed on this.
So, that’s all for this post my lovelies.
Thanks, as always, for stopping by.
Until next time
This post is dedicated to Kat, Adam and Jon…and The Cerebra Centre for Neurodevelopmental Disorders. Thank you! ❤
…and all the other people who took part in this study ❤
…and, of course, to Fat Bob! (who is now continent and svelte!) *Mwah* ❤