Specsavers launch NEW Disney #KidsFit glasses for children who happen to have Down Syndrome

When I was younger, way before I had Oscar, I had a stereotypical view in my mind of how I perceived Down Syndrome. I pictured someone with a really bad haircut, dowdy clothes and thick NHS glasses…

Call me superficial but how Oscar looks and is perceived today, really matters to me. I don’t want the fact that he has DS to be an excuse for not looking good. I want him to feel great about himself and above all valued.

So when I heard that Specsavers we’re bringing out a new line of glasses, specifically designed for children who happen to have DS, I wondered if they’d understand how important it was for them to get it right?

As you guys know, up until this point Oscar has had his eyes tested on a yearly basis by a specialist in the field of Down’s Syndrome Vision Research. He also gets seen at our local hospital but was recently discharged from them, having been advised that from now on, they’re happy for him to be tested at our local opticians just like everyone else.

To be honest with you, knowing how stressed Oscar can get in these appointments and knowing how important it is, that the person testing his eyesight understands and meets his needs, I had had my reservations. But in hearing that Specsavers branches across the country, were making a conscious effort to make sure their staff had further training in working with people with additional needs, I felt a little more assured.

Oscar was invited down to our local branch of Specsavers to have his eyes tested by one of their opticians earlier this week and although as it turns out, Oscar doesn’t need glasses this time, the whole experience has put me completely at ease for further tests

The general consensus when I asked friends of mine, about what you as parents feel is important when it comes to choosing a pair of glasses for your child, it seemed there were 4 top asks

  1. COMFORT and how important it is that the glasses sit on their noses properly, don’t slip and clear their eyelashes. If the fit isn’t right, why would any child even entertain them?
  2. DURABILITY and how it is essential these glasses can withstand being thrown about a bit 😉
  3. AFFORDABILITY – although children are eligible for FREE glasses on the NHS, because before now they haven’t met the above criteria, I know many families who have spent a lot of money outsourcing specialist branded glasses at a cost to themselves (and usually additional pairs in case they get lost/damaged)
  4. DESIGN – Our kids looking and feeling good/cool is without question, SO important right?

So having been sent 4 different designs, Oscar has trialed them all and is a big fan. They are calling the range –Disney #KidsFit and are the glasses are now available in stores across the UK. Oscars particular favourites were The Avengers pair, with the Pixar Cars pair coming in a close second. But having seen some of the other styles online, I am certain your little ones I know would be absolutely thrilled with a pair of their own.

#AD #Specsavers #KidsFit #LoveGlasses #Disney #theluckyfew #nothingdownaboutit #downssyndrome #downsyndrome #dontbesorry

It’s the most wonderful time of the year

I think it’s really easy for us to get swept up in the picture perfect Christmas. Social media is a bugger for that don’t you think? I know I am guilty of following the types of families on Instagram that look from the outside in, to be just that. Perfect. The types of families that all wear matching PJ’s, open their presents in front of a colour coordinated Christmas tree, with their log fire crackling behind them.

Our reality? Well, it’s kind of different. For a start, a log fire with Oscar around? Not even a chance ?

I sometimes get the impression from what people say, that I can paint this idealistic view of what a family looks like. We might look like the type of family you’d like to be a part of, to some, which is all very flattering, but this is just a gentle reminder, that sometimes not everything is as it seems

Oscar woke 2 whole hours earlier than Alfie and Flo on Christmas Day. Not unusual for a child to wake early on Christmas Day you might think…. But did I mention it was 4.30am? Oh and imagine if a told you that the 4.30am start was nothing to do with his excitement that the big fella had left a whole heap of presents downstairs for him. No, waking at 4.30am (or thereabouts) was something that happens every single day. And for a child who has just a handful of words, suddenly at 4.30am he becomes VERY vocal and VERY loud too. Imagine every day, trying to keep him quiet so he doesn’t wake his brother and sister, who unlike him, need more sleep to function.

Imagine, and apologies for all the “imagines” but I’m just setting the scene here, that before the day has even started I/we’re all pretty tired before the day has really begun. Not so perfect now hey?

Christmas Day started off well for us though. I actually think that this was the first time Oscar has truly understood the whole present opening thing and watching him Alfie and Flo walk down the stairs together, see that Father Christmas had been and their faces when they saw what he’d left for them, was priceless. At home, with just the 5 of us, Oscar seemed relaxed and at ease. Perhaps more to the point, I had been too but when he got to my parents, where the house was full of our family (13 in total) while it wasn’t a total disaster and there were moments of wonderful, it certainly wasn’t how I imagined it would be.

When it was time to open presents, I think Oz just became a bit too overwhelmed. The pace they were being handed out (my nieces were super excited to dish them all out) combined with wrapping paper flying everywhere, the noise, others crowding around him, eager to see what he’d gotten, it all just became a little too much for him. Sometimes when this happens Oscar can become introverted and not want to engage, other times though and in this instance, he can become wired. Grabbing at other peoples presents, trying to rip off the paper, attempting to sit on them or jump on their backs , the sensory overload for Oz at times, can be all consuming. Not wanting him to hurt anyone (there was after all a few children wandering around at this point who were younger and therefore smaller than him) we obviously tried to calm him down. We’d usually give him a movement break, taking him outside for a walk or a run around but at this point with it being Christmas Day and in the middle of the festivities, having pointed to the TV, we decided to put it on quietly for him, so that the rest of the family could enjoy opening their presents. I think before I’d had Oscar, if I’d had heard that someone put the telly on for their kid midway through present opening, I might have passed judgement. But since having had him and understanding his needs a little more. His need for calm, knowing that my mum had given me a little nod to say, it’s honestly ok Sarah, we made the call to put it on for him.

I should mention here that Oscar, has been really suffering with a bad ear infection throughout the Christmas holidays and I now realise, leading up to them too. It’s hard to know how much that effects him. I’m pretty certain it’ll be having a knock on effect on his behaviour but then there’s always the chance, that this is just him.

When it came to eating his Christmas Dinner, on seeing the big crowd around the table, he took one look at them all and bolted. He’s familiar with all my family, he sees all of them regularly, knows exactly who they all are and loves them all. He also loves food and has never been one to really refuse a roast dinner, but for some reason he didn’t want to sit down at the dinner table with everyone. This isn’t usually something that would phase him, but for some reason at the moment, whenever we’ve seen friends or family over Christmas and New Year, he’s been funny about sitting down for a meal with everyone.

We tried to coax him there with the promise that he could sit next to Daddy and even watch Daddy’s Phone if he sat with us (which worked momentarily) but after a few short minutes, a few bits of broccoli and a couple of pigs in blankets, he’d wanted to get down. Short of forcing him to stay at the table, which let’s face it, trying to implement disciplinary techniques in front of our entire family, all trying to enjoy their Christmas meal together in peace, we decided to let him get down from the table.

This wasn’t how I’d imagined Christmas Day to be. I’d imagined we’d all sit around the table together. I’d felt sad but also frustrated that the image of how Christmas Day was supposed to pan out, was slipping away.

After dinner, while his cousins and brother and sister busied themselves playing with their new toys, Oscar did so for a little while (this year loving a wooden birthday cake he could cut with a knife and dish out, along with two light up tambourines that he enjoyed shaking endlessly in the kitchen… only knocking over and smashing one loaded glass of prosecco as he went ?) but fairly quickly decided that he didn’t want to be a part of it. Instead he decided he’d much rather sit on the stairs with his iPad and watch that

As the years gone on, Oscars ability to sit and focus on toys/games has massively improved. Just yesterday I watched as he sat with Alfie and Flo and they all playing together with the array of Paw Patrol toys they’ve acquired. He honestly has made such progress in that respect. But on Christmas day, perhaps because it all got a bit too much, he chose to take himself off and sit away from the group

I think the point here is, sometimes we have this idealistic view of how something’s go and occasionally it doesn’t turn out the way you’d hoped it would. I think for any child, the change in routine, the extra people around etc can be hugely overwhelming and I really think it’s ok to give yourself a break as a parent from time to time and not try to enforce something on them, especially If they’re not happy.

But with a child who has additional needs, I think we as parents spend and awful lot of time trying to get them to lead as “normal” life as possible. Trying to get them to conform because that’s how society has us believe is acceptable. Like sitting beautifully and eating our meal in a restaurant for example. Or walking through a shopping centre without running off. Sometimes, these things are totally manageable for Oz. Did I mention he sat for the entire performance of Aladdin just the day before and loved every second of it? In fact that time it was Alfie who spent the best part of the show asking when it was time to go  (He was scared of the baddie apparently) But sometimes, for Oscar and others like him, stuff like this comes harder to them.

So just to say, I think it’s ok to give him space. It’s ok to give him the iPad or put the telly on. You do whatever you gotta do because you don’t want to ruin it for your other two children, who by the way, loved every second of Christmas. You do what you gotta do because it’s important that all the family are together at Christmas because that’s what it’s about. I don’t want to shut ourselves away and not join in because of Oz. Because there are always those times that he CAN do it and wants to be a part of it. For those times, we can’t stop being who we are.

And if it means your cousins come out to play with you in the kitchen from time to time because they know you’re out there and they want you to feel a part of it all, that’s totally ok. If it means your Auntie coaxes you outside to have a go on your cousins new roller skates (that you definitely can’t manage yet, but she did it because you wanted to have a go) that’s ok too. And if your Grandad (my dad) quietly whispers to me “I’ll go and sit with Oz” because you’re watching TV in the other room and he wants to keep you company because he doesn’t want you to be alone, that’s ok also. And when I spot your little head peeping round the door and I gesture to you to come in and you shake your head no but then smile watching everyone else having fun. If that’s all you can cope with, then I’m ok with that. Really ok

It’s not how I imagined it’d be. But it’s our Christmas. With you.

What a wonderful thought it is that some of our best days of our lives haven’t happened yet…

Back when I first had Oscar, I remember thinking I didn’t allow myself to imagine, what life might be like too far into the future for Oscar, Chris and me. It just felt like too much to think about, too soon. The future was a scary place, you see. It was the unknown, I suppose.
I know back then, I could cope with seeing other small children, a couple of years or so ahead of us but if I came into contact with anyone with Down Syndrome, that was just that little bit older, I remember holding my breath and wishing and willing that they’d be ok.
And when I say ok, I basically mean that they were coping. That they were happy. That their parents were happy too, I suppose and that life for them all, wasn’t all that different, than the next person.
You see, that had been one of my biggest fears. I’d had this preconceived image in my mind about how I imagined our life would pan out. How I thought families who happened to have someone with DS in it, lived their lives… and back then, I so hoped I was wrong.
Of course, now 5 and a half years into this journey I realise that actually, life for us isn’t all that different from what it would have been like, had we just had three small children regardless of one of them having additional needs. When we take all three out on their scooters, it’s always a work out to keep up with them. When we tell them we’re leaving the children’s playground, all three of them put up a big old protest refusing to leave and when we tell them it’s time to turn off the TV and come and eat their dinner, they totally all pretend they haven’t heard us, so they can watch the end of an episode of “Go Jetters” they’re sat there engrossed in. Not unlike most households I imagine.
Having Oscar, in so many ways, isn’t too dissimilar to having any other child…
Only sometimes it is.
This may just be me. And perhaps by admitting this out loud I may be in for some backlash or perhaps, by talking about it, some people might understand exactly where I’m coming from (I hope so anyway).
But when you have a child like Oscar, you sometimes forget the quirky little things he does and the way that he acts, that may to others, make him stand out as being different. Things that have just become your norm, that to some may seem a little odd. Like sometimes when he’s tired, instead of telling me that he can’t walk any further, he’ll put his finger in his mouth and chew down on it, making a moaning sound. He’s always done this to be honest… since he was a baby. I guess it’s his thing. But I figure to others, If you’re not used to it, it may seem a little strange.
And when, on the odd occasion he gets cross, usually because Alfie or Flo have taken a toy from him that he’d wanted, he’ll stand there for a few seconds looking annoyed, then because he doesn’t quite have the words to tell them that actually, “I was playing with that”, he’ll run at said toy and head butt it. Odd, hey?!
For the most part Oscar, aside from the obvious characteristics that a person with DS might have, looks and acts like your average child. He runs, he jumps, he plays, he interacts but sometimes these little quirks, that make him him, crop up and it reminds me of how differently he can behave to the next child.
Last week, as we were about to pick Alfie up from Preschool though, Oscar, Flo and I had to cross a road to the entrance. I had noticed a lady standing on the other side of the street but hadn’t thought much of it. As we approached the road I told Oscar to stop and wait. Which he did. I asked him to look for cars and understanding the instruction, he moved his head from side to side, to check. And when I confirmed that there were no cars, he waited for my “Ready steady go” before heading across. To anyone watching it would have looked like:
A) I totally had my s#%t together and
B) that Oscar was this angel of a child who always listened to everything I said ??
And as we approached the other side, the lady who’d been stood there and who’d witnessed this display of A* parenting ?, asked if I was Sarah as she’d heard about the blog and Oscar etc. You see, a relative of hers, had just given birth to a baby boy who happened to have DS and she knew that I’d been chatting to her via this page.
We talked for a while. About the new baby and about the diagnosis. We touched on how things were in the beginning for us versus how they are now and all the time we were chatting, I felt secretly smug that she’d witnessed Oscar crossing the road and generally being on top form.
You see it’s something I’ve always been conscious of. I guess because of how I’d once felt when I’d first had Oz. But when meeting new mums (or family members in this case) who’ve just had a baby who happens to have DS, I’m suddenly so much more aware of how Oscar’s behaving and how he’s “seen” by others.
Because you see, I recall all too well when I had just had Oscar, that I hadn’t wanted to see ‘different’. I of course wanted to see other children with DS but I wanted to see that they were ‘normal’ and being brilliant. I hadn’t wanted to see them acting differently to the next child.
In this instance I had hoped that Oscar could show this woman that he was indeed just another little boy, leading a pretty nice life. He wasn’t a burden, he wasn’t too much to handle. He was just Oscar.
Having finished our conversation with the lady, my attention was turned back to Oscar. He and Flo were rearranging the bins in the Preschool courtyard area which again I thought wasn’t too big deal and might not be too dissimilar to the next child. How lovely it was for her to see him playing, I thought.
Just as I was saying goodbye, Oscar started to run with the little food waste bin and head towards the Preschool entrance. I called after him to stop, only he had other ideas. He ran faster and it took me a while to catch up with him (ever hopeful that he might have listened to me, I actually didn’t set off straight away, giving him the benefit of the doubt. Rookie error). Once I had, I asked him to go and put it back. Only he didn’t want to. I asked him again, aware now that a crowd of parents (and the lady I’d been talking to) were gathered by the entrance waiting to collect their little ones. I told him I’d help him, which he seemed a bit happier with so we walked together to put the bin back. Flo had joined us by now, finding the whole thing hilarious. We put the bin back where he’d found it and before I had a chance to say thank you and well done, Oz bolted. He ran back towards the Preschool entrance and the crowd but as he ran he started shouting at the top of his voice. The shout wasn’t him shouting any words as such. It was the type of shout that I would have associated, before I had Oz, with a child who had additional needs. It was loud. High pitched. Startling. In fact, I’m pretty sure the entire queue of people were now all looking at him.
You see to me, Oscar’s outburst, which by the way, was just him exuding a bit of energy and his way of showing his excitement, was no big deal. It wasn’t intimidating to me, or Flo, who was running excitedly alongside him, but to others, to those who don’t know Oscar, I’m well aware it might have been.
On any given day, I probably wouldn’t have given his little outburst a second thought. But as soon as he did it this time, all I could think about was the lady I’d just met. Who I knew would have been watching him. Who if she’d been anything like me, would have been looking at Oscar and willing him to just to be “normal”. She wouldn’t have wanted to have seen different. She’d have wanted to see that he was ok.
I’d wanted her to see all the things Oscar was capable of. All the things he’s achieved over the years. Things that I couldn’t have even have imagined he would do, back when I’d been in her position.
I HOPED she’d seen the little boy who crossed the road and followed instructions beautifully. The little boy who played excitedly with his little sister, who herself, sees him for him and no different. I hope she saw a little boy who pushes the boundaries with his Mummy because he knows his own mind. And I hope when she thinks about his little outburst that she viewed, for what it was. HIS way of expressing himself. A little boy having a great time.
My message to her and to anyone just starting out on this little road… is that, when I look at young adults with DS, whether it be a stranger on the street or someone on social media that I follow, I occasionally still hold my breath. I still wonder how Oscar will do in comparison. If he’ll struggle the same way they have or be just as brilliant as they are. And as much as I know how we are all so very different, and that all our kids do well in different ways, I often still find myself wondering if he’ll be ok.
The thing i’ve figured out over the years though, is that, when you actually get there… to your destination I mean… whether it be a year on, two years on or five years on, it’s nowhere near as scary as I imagined it would be. Nowhere near.

Popsa – An app that creates a photo book in 5 minutes!

Before I had children, I had had an image in my mind of the type of Mum i’d be. The type that would make the large majority of meals from scratch. The type that would make sure their kids always looked immaculate (because dirt and bogies were just gross) and the type that would document every milestone and memory in a hard back photo album, that I could bring out in 14 years time and show Oscar, Alfie and Flo’s new girlfriends/boyfriends…. Because that’s a Mums prerogative right?

But then I became a Mum and all those ideas went out the window. The reality? I’m really rather average at cooking, my kids are bogie ridden and dirty most of the time and I don’t think I have a single photo album of any of them.

In fact i’m generally pretty rubbish at printing any photos out, let alone dedicate a whole album to their younger years.

So when Popsa got in touch and set me the challenge that i’d be able to create a photobok in just a few minutes… I kinda felt like I should probably give it a go.

Friends of mine, these are the friends I aspire to be like by the way, have told me they’ve spent many an evening, hunched over their laptops creating fabulous photo books of their baby’s first year for example. And don’t get me wrong, there’s absolutely nothing wrong with doing all that… I just know that I wouldn’t ever get round to it.

The thing with Popsa is, it literally is so straight forward and ridicuously quick.

You can download the app direct from the App Store (https://goo.gl/uvTnFU) and it’s available for both the iPhone and the iPad (and will be coming soon to Android)

The app itself is literally one of the easiest ones i’ve ever had to navigate. And if I can do it, it’s seriously fool proof. I’d decided before starting, that i’d really love to have a book that I could remember our last summer holiday by. I’d posted the photos in a Facebook album on my own private page but to have a hard copy that I could pick up and remember our time as a family together in Switzerland, I thought would be really lovely.

You start off by selecting the type of book you’d like to create. Popsa has various options, including different types (hard or soft back) and different sizes, then you instruct Popsa to access your photos either from your albums in your phone or via Facebook.

Next you select the photos you’d like to include, before giving your book a title. In this case we named ours “Holiday”. The photos then automatically get put into the book and although there are different layouts on each page, its up to you if you want to change where the photos go or change the formatting. You also get to choose your front cover which I think is a lovely touch.

If you’re then happy with the book, you pop in your payment details and you’re done

The hardback books typically takes 7-10 days to be produced but there are the soft back books that don’t take as much time. Once it’s landed on your doormat, you have it as a keepsake and/or to share with family and friends

If you’d like to see just how simple it is, take a little look at the video I put together here

At the moment Popsa are running a promotion where they’re giving any one of my followers a 50% Discount on up to 2 photo books until the end of 2017. All you need to do is put in the code – DONTBESORRY

It really is so super quick and easy to do. Why not give it a try?

Please Note this is a collaborative post.

“Be sure to taste your words before you spit them out” 

Yesterday a Tory MP tweeted – “Window Lickin’ Twitter Trolls out in force today”. This, from a well respected, intelligent woman who has a following on social media of around 30,000 people and who apparently felt it was appropriate to post this.

Shortly after the tweet went live, because of the backlash she had gotten from various members of the public (who were understandably up in arms about the fact that she had used such a phrase) she apologised and then subsequently deleted it. Her apology came however, after she tried to justify her use of language but as people continued to call her out on it, still claiming it to be unacceptable, she appeared to fail miserably. She said she wasn’t directly making reference to people with learning difficulties, simply that she was talking about trolls, but everyone knows, that the phrase “window lickers” is usually associated with people who have additional needs, hence the twitter rage

The thing is here, last week I was called out on something I said. Not in just one instance but TWO SEPARATE TIMES. The first was in relation to the blog post I’d written about adoption. A lady (very kindly I might add) let me know, that instead of saying

“A mother had decided to put their baby up for adoption”,

It’d frame it more positively, if i’d have said

“A mother chose adoption”.

She said, knowing how mindful I am about the use of language, she hoped I would understand. I of course went straight back in to my post and amended it to read the way she had suggested. I also apologised that it had never even occurred to me to phrase it that way and that i’d learnt something from her that day. I truly believe the lady in question understood there was no offence intended and we left it there.

The next exchange was slightly different. A few days ago I posted, what was meant to be a very light hearted, tongue in cheek post about the half term break. It opened with how I didn’t understand the Mums out there, who said things like

“I can’t wait for the school holidays to start”

Because in my mind (with three children under 5) I find the holidays really hard work. In response to those Mums I jokingly said, that I had wanted to say to them “ARE YOU MENTAL?”

And having gone back in to the post in question and noted that with almost 100 comments on it and 600 “likes, loves and LOL” emoticons, not one was negative. Seeing that not even one of them appeared cross with my use of language or if they did, no-one said anything. There was however, one lady, who again I might add, was so polite about it, who private messaged with the following…

“I enjoy your posts & your message is a really important one for so many families.

Please could you consider not using the word ‘mental’ in such a pejorative way?

You want to tackle stigma against Down syndrome & intellectual disabilities (Im 100% with you!) But your casual use of this language reinforces negative stereotypes about mental illness.

I’m a Psychiatrist & constantly working to tackle stigma. Stigma is such a big issue in people delaying seeking help. I find it interesting that so many of us that are so careful about stigma in so many spheres still use words like mental/crazy/psycho etc

You have a big following, the tone you set could make an impact. The language we use matters.

Thanks”

Making anyone angry or upset about my misuse of language is the last thing i’d want to. I apologised striaght away of course becasue I may be many things, but I hope disrespectful isn’t one…but much like the MP had done, I too tried to justify my actions. Having pressed send on my response back to her, I realised afterwards to her, I might have sounded flippant, like it was no big deal and I realised, I probably sounded like a prize idiot

I said something along the lines of…

It was a throw away comment. A figure of speech. That I’d meant nothing by it and that It was just a light hearted blog post, meant with no malice.

I’d thanked her for calling me out on it though because otherwise I would have never known and told her that I fully understood it to be bad use of language and that in the future I will obviously be more mindful…

… But on the flip side, there was a niggling voice inside my head, wondering if the world has gone just a little PC mad?

If I can’t say mental, incase I upset people who are or those who have lived or worked with someone who is? What should I say? Mad? Insane? I can’t say either of those can I?

I few paragraphs back, I just referred to myself as an idiot. Is that derogatory because back in the day, when people were referred to as the village idiot, they were usually those people who had learning difficulties?

If I say stupid, is that going to upset all those people in the world with a lower IQ?

But then it dawned on me. Perhaps I only get upset by people using Retard, F*&ktard, Special, Mong because it effects me personally. When people use these types of words, I feel offended because directly or indirectly they are talking about kids like Oscar. And that really hurts

I think the thing I’ve learnt from all this is that we all need to be more mindful of our choice of language. Something that might be a slip of the tongue to someone, might have a big impact on the next. I truly believe that this sort of thing should be taught in schools, educating our children and our children’s children about what’s acceptable and what’s not. When I was at school, we used to call each other “spaz”… It’s only occurred to me now that I had actually no idea what I was talking about, only that in using it, it was a put down. Racisim and Homophobia are hate crimes. Should the same be said for those people who use slurs against those with disabilities? And while I have apologised for the use of the word mental/crazy and genuinely meant no harm, am I just as bad as those people who write “window lickers?” I can’t get my head around it to be honest. On the one hand I think we all need to lighten up a bit but on the other, I know how hard it cuts when someone says something indirectly about Oscar. I know in future I am going to try and think before I speak (post on social media) because what we say and how we say it, is so very important

I actually think, had the Tory MP accepted responsibility and apologised, she might not have gotten so much stick. And it goes back to the title of this post, hopefully raising something for us all to remember – “Be sure to taste your words before you spit them out”

In the end we only regret the chances we didn’t take

It’s National Adoption Week here in the UK this week (16th – 22nd October) and as in previous years, the need to find families for some of the most vulnerable children, remains at the heart of event

There are many reasons why a mother might decide to choose adoption. But of all the reasons listed, the one closest to my heart, is when a woman finds out she is having or has had a baby with Down Syndrome and she no longer wants her baby. Perhaps she had found out at birth or perhaps she’d known prior and not wanted to have an abortion, but nevertheless, in both cases, because of the DS, these women, no longer want their child. When a woman chooses adoption, some people might say she isn’t making the choice to give up. Some believe it is an act of love to put a child’s needs ahead of their own desires and I do understand that to a point. But as a mother to three children myself, I can’t even imagine being put in that heart wrenching position. Is there really that little hope?

Something that has played on my mind for a long while now and something i’ve felt really passionate about writing about, are those babies. The babies who happen to have Down Syndrome that are born, aren’t wanted and are put into foster care, hoping ultimately, to be placed with an adoptive family.

You see, I am contacted via my blog and page, by women who have recently given birth to a baby with DS a lot. So many of them had post natal diagnosis’ and usually have had a big big shock. Mostly these women are going through a tough time but in the main, seem to get through it. But amongst those messages and of those women that contact me, I can’t tell you the number of them that have been told by their hospital, whether it be openly or off the record, that if they wanted to leave their baby there (e.g if they didn’t want him or her because of the news they’d just gotten), then that’d be ok. Whether that be by a consultant paediatrician, a midwife or perhaps even a nursing assistant, having a private word in hushed tones… these women have actively been told, that if they didn’t want to take their babies home with them, they could sort placing them in care.

Perhaps some of these women feel relieved as they think that that’s the only answer at that point in time? Or perhaps others might argue, if that’s the message the hospital/health care professionals are projecting (that it’s ok to leave your baby with them), no wonder there are babies placed on the adoption register, simply on the basis that they have Down Syndrome.

I don’t doubt that statistically the number of babies with DS placed with adoptive families, is fewer than recent years. I hope that with awareness being raised about what caring for a child with DS in this day and age means, would give both those expectant mothers with a prenatal diagnosis or the ones who find out at birth, hope, that life really will be ok.

It’s my understanding though, that the large majority of babies/children who are adopted can have underlying “issues” themselves. They may be suffering from neglect. The may have suffered abuse. Their mother may have even drank or taken drugs throughout her pregnancy and therefore they are at risk of having Foetal Alcohol Syndrome. The mother/father may have been mentally and emotionally unstable. From what i’m told, children aren’t in care because they come from intact families, with good standards of living and access to good health care and nutrition. Proposal for adoption by destitute, single mothers with poor prenatal care and inadequate diet, is sadly the most common reason why a child is available. The second most common is termination of parental rights, because of neglect and/or abuse. It’s been proven that lack of stimulation and consistent caregivers, poor nutrition, and physical/sexual abuse all interfere with normal development. These children fall behind in large and fine motor development, speech acquisition, and social skills. Many never find an individual with whom to complete attachment…. So with that in mind, can I ask why adopting a child with Down Syndrome would actually be so bad?

Yes, Oscar comes with his challenges but with a family behind him who love and care for him, he is genuinely thriving. Would a child with DS really be that awful?

Just recently I had a message via my blog from a lady called Jane. She wrote to tell me that she enjoyed the page because she found some of it relatable as she has a sister with DS, who they’d adopted, called Nicole. Knowing that I wanted to write this, I asked her if she’d mind sharing her experiences. Here’s what she had to say…

“When I was 5 years old, we decided to become a foster family. Mum and Dad felt that they had been so blessed having their three girls, that they wanted to help other children too. On in June 1985 we got a phone call to say that they had a 5 day old baby with Downs Syndrome that they would like us to foster. Her parents had said they were not sure if they would be able to cope with her additional needs or not and needed time to make that decision. Mum picked Nicole up from the hospital when she was just a week old. I remember her coming to pick me up from school that afternoon with Nicole and thinking that she’d brought one of my dolls to school. She was so tiny and very very cute.

Mum was a paediatric nurse and had worked with children with Down Syndrome before so she knew that the best thing for her, even at week old, was stimulation. With some help from social services we looked to find local support groups and we also talked to another family who had a child with DS, to ask about their experiences, both the good and the bad!! Nicole’s family came to visit her until she was 4 months old,when they decided definitively that they would put her up for adoption after all.

So she was put up for adoption through the usual channels but no one came to see her. Nobody appeared to want her. Social services were looking at putting her into an adoption service that deals specifically with children with particular needs. Mum and Dad discussed this with us and my sisters and I turned round and asked why someone else should have Nicole and not us. To us she was our sister so why should we let her go now?

And that was when we went down the route of adopting her. As a family we talked about it a lot and made sure we all felt happy with our decision. Some of our extended family were not very keen on us adopting Nicole (mostly the older generation) as they thought she would take Mum and Dad’s attention away from the rest of us. It took another 14 months for all the checks and legal stuff to be done but we ended up adopting her in the December of 1986. Social services were very helpful and very supportive. Nicole is now 32 and doing so well. She went to mainstream school, has a job, gets the bus to and from work every day on her own, does her own cooking and cleaning (with some help) and is a generally very happy person. She has been such a blessing to us and to our community. Yes, there have been struggles, a lot of frustrations and she does my head in sometimes but I wouldn’t change her for the world. The only thing I would change, is other peoples attitude towards her.

Jane”

I fully understand, there’s always going to be those people who feel they wouldn’t be able to cope with a child with Down Syndrome regardless of what I say. But if I have just one ask here, it’s that you listen to this plea…

To the married couple, same sex couple, single parent wanting more than anything to adopt a baby or child – Please please would you consider one who happens to have Down Syndrome?

I get that we all strive for perfect. I like you, did too. I wanted a ‘normal’ baby. I didn’t want ‘issues’ and I certainly didn’t want ‘different”. But now that I do… have my very own ‘different’ baby I mean  (well he’s 5 now but still my baby) i’m here to tell you that ‘different” is actually pretty frickin wonderful.

And all the while I believe that every unwanted child deserves to be adopted and I have the upmost respect and admiration for those who who choose to adopt, please remember that none of us know with any child, what we’re going to get. No child comes with a money back guarantee in that, if he or she does turn out to be different/have issues, we can’t just trade them in. So I ask you to think about it for a while. Do you research by reading up to date information on what it means to have a child with Down Syndrome today… in 2017… This would be your opportunity to show the world, that you wanted them for all that they are, in spite of their diagnosis. And although life won’t necessarily always be smooth sailing, I can say with more certainty than i’ve ever felt before, your child will teach you more about life and love than you could ever have hoped for. It will be brilliant. I promise.

Down Syndrome Awareness Baby Brain Apparel Leggings Giveaway

If you follow me on social media, you’ll know October is Down Syndrome Awareness Month. To celebrate our beautiful boys, Harps and I are teaming up to host a fabulous giveaway!

A little bit of background for you…

As some of you will know, I write the blog “Don’t Be Sorry” primarily all about my son Oscar, 5, who happens to have Down Syndrome. I originally started writing, as I found it cathartic to document my thoughts and feelings following Oscar’s postnatal diagnosis. And then one day, having decided to publish my words on my own private Facebook page, I received such an overwhelming response, I very quickly launched a website and public Facebook page. What started as just a handful of people following my journey with Oscar, has grown into a following of close to 30,000+. I regularly talks to “new” Mums and Dads online following the news that their babies have received the same diagnosis as Oscar which I hopes helps them when they may be feeling like the future’s looking bleak. I also give talks to medical professionals about the importance or language and terminology and just because you know, life’s not busy enough raising three kids and doing all of the above, I’m currently busy writing a book.

I got chatting to Harps online shortly after her second son Saajan was born and we quickly became firm friends. Saajan like Oscar, was diagnosed with Down Syndrome at birth and Harps has since said, that she feels I helped her, at what was a seemingly a very dark time. She also says following our blog and page has given her an insight into Saajan’s future and that she can now see, it looks to be a bright and happy one.

Harps originally started her blog, Baby Brain Memoirs back in 2014 as an outlet for her journey riding through post natal depression and the highs and lows of motherhood with her first son, Arjun. Since then, she gave birth to her second baby boy, Saajan, who like I said, happens to be rocking an extra chromosome! Since her husbands moving post on sharing the news about their precious little boy, she’s not blogged much as she still doesn’t feel ready but she’s sharing her journey through social media and has received an outpour of love for Saajy from her blog followers! Aside from his extra chromosome and a few extra physio appointments (which she sees as brilliant family time now!), she feels they’re living a pretty regular life. Arjun and Saajan have the most beautiful brotherly relationship but she’s sure soon enough there’ll be plenty of squabbling!

Harps started her spin off business, Baby Brain Apparel, in 2015. She makes handmade baby and toddler leggings and do a matching adult range too which includes leggings and lounge pants! She hand designed character tees which were inspired by the quirky antics of her toddler Arjun. Since having Saajan, Baby Brain Apparel has an even greater meaning for Harps and her family with it being uncertain when she will return to work. Although she’s still riding through the journey of having two tiny humans to keep alive alongside a Down Syndrome diagnosis(!), she has begun to focus her energy on raising awareness in hope for a brighter future for children like Saajan and Oscar. Part proceeds of all navy and yellow clouds sold at Baby Brain Apparel will be donated to The Down Syndrome Association.

To celebrate our beautiful children, Harps and I are giving one of our readers the chance to win a matching pair of adult and baby leggings in a choice of navy or yellow clouds!! Oscar and I have tried and tested them and they definitely pass the comfort test!

The competition is open worldwide however postage is covered for the UK only.

Competition closes at midnight on 17th October!

It’s super quick and easy, click on the link (“Enter the Giveaway”) below to enter!

Enter the Giveaway

Good Luck Everyone

Sarah xxx

 

Toy Box Tots

I don’t know about you but our playroom at home is full to the brim with toys. Dinosaurs, Lego, Pirate Ships, Paw Patrol figures, Cars and goodness knows how many Dollies… it always looks like there’s been a national disaster happen in there after Oscar, Alfie and Flo have got their hands on it all. And although they aren’t short on toys, when we go round to other peoples houses, or to any sort of playgroup/scheme, they always appear to have so much more fun playing with NEW toys.

So when Toy Box Tots offered us one of their Toy boxes to review, I jumped at the chance.

They have a selection of different boxes to choose from. Boxes for 12-18 month year olds, 18-24 month olds, 2-3 years and 4-5 year olds. They also have Corporate Box for Preschoolers. Each box is based on one of their favourite books and they include your very own copy of that book in the box, for you to keep forever.

The idea for Toy Box Tots came up when Caroline and Ceci (who’d become friends when their babies were in Neonatal Intensive Care together) were at a playgroup and realised that we were finally able to have half a conversation and actually drink a warm cup of coffee all because other children’s toys are so much more interesting than their own! So they came up with the concept… loaning out complete toy boxes for extended periods of time, to families who might fancy a change from the toys they have at home…. Or perhaps want a box delivered to an alternative location because they hadn’t toys available to them there (Grandparents houses, Holiday homes etc).

My daughter Flo and my gorgeous niece Sophie are two little girls who love to play together and I knew they’d be the ideal candidates to trial one of the boxes. We were given the 2-3 years box, based around the book and theme “The Lion Inside” and I can’t tell you how much they loved it. My sister read them the story to start with and then showed them all the toys they got to play with next. The moment they saw them all, their little faces lit up. The plane was a firm favourite with them both, as was the safari truck. They had to post the different animals into the holes of the truck, which was tricky at first but towards the end they’d just about grasped it. Sophie’s favourite appeared to be the puzzle. Every time she put the pieces in, it would make the sound of that particular animal e.g. If it was a Lion, it roared etc. She found this highly amusing.

Flo seemed to enjoy the blocks, making towers and knocking them down. Hours of fun!

The box also included a torch and a touch screen keypad as well as the cutest puppets which were a big hit.

Just to say, all the toys were really great quality and looked like they’d barely been used (very clean) so If you wanted to give this fab new business a go, you can either pay for a one off box or sign up to a monthly subscription (Prices on their website)

Toy Box Tots really do make things simple for you though. All you need to do is go to their Boxes page, click on the one you require and purchase. Once the order has been processed they will then call you to arrange delivery. As well as some amazing toys, you will also receive their newsletter which is full of exciting ideas and ways to use the toys in the box.

I think you’ll agree a fab concept that was definitely a big hit with the girls. Not sure how I’m going to break it to Flo that soon she’d going to have to part with her mouse puppet but maybe we’ll just have to sign up to the subscription and distract her with something else. Here’s hoping she doesn’t notice hey.

Thank You Toy Box Tots

It always seems impossible until it’s done…

So…. it’s just after 7pm. All three kids are in bed and almost asleep, after 7 whole weeks off for the summer holidays. Tomorrow, is a momentous day for us (and many many families like us across the land I should imagine), in that Oscar goes back to school (followed shortly after by Alfie and Flo, who are both off to preschool. Can I get a woop woop!!!)
I’d been a bit apprehensive at the start of the holidays. 7 weeks is a long old time to entertain three little peps AND keep sane myself… and I was worried, what with our kitchen and garden being out of action, that 7 weeks of it, may just send me over the edge
But we made it.
Yes there’s been tears. The pinnacle of which was about midway through the holidays, in a crowded park trying to get Alfie to sit down to a picnic, whilst Oscar made a break for it in search of a bouncy castle he’d spotted across the field. The tears? They were mostly mine?
There’s been the odd tantrum or two. I’ve learnt that taking three small humans to anything that resembles a shop, will result in Oscar dropping to the floor, refusing to move and him and I having a stand off. Yep, if you saw me in Sainsbury’s Brookwood earlier today, I was the mum losing her s#%t!
There’s been parks. About 247 at last count. Yeah we’ve seen ALOT of parks. In fact I could probably go on that programme “You Bet”and if Matthew Kelly were to show me photographs of children’s playgrounds in Surrey and the surrounding areas, I’d recognise all of them and be sure to win a holiday to Lanzarote ?
There have been some “Sparkly moments” though ❤️ (Sparkly moments are apparently the moments that make you feel all warm and fuzzy… thanks to the lovely reader who pointed out, that this is what she calls them). Like being on holiday as a family and watching the kids play with one another.That was pretty sparkly. Listening to them laugh together… that real belly laugh, when something cracks them up, is always the sparkliest of moments to me. Spending time with family and friends too. Oh and the sunshine (for the brief moments it was out in the UK) are definitely amongst the things i’ll remember this summer.
People tell me, as kids get older, they get easier but this summer I found, instead of having two on the loose (because Flo was still pretty tottery, walking around this time last summer) this year, I had them ALL charging off in hot pursuit of one another
But we did it. And the bonus? We actually had fun.
Perhaps next year, like everyone says, it will get easier?…or maybe they’ll just find ways to run rings around me in different ways? Who knows.
So to all the parents out there, sending their kids back to or off to school this week. Cheers (That was me raising a glass of the fizzy stuff). We only went and smashed it

Ignorance is always afraid of change

“What a bunch of selfish stupid people. What kind of life are those kids going to have? No chance of independance, no chance of holding jobs, no chance of normal life. Stuck on disability pension for the rest of their lives …. And I am REFUSING my taxes being spent to pay for the stupidity of their mothers …,” said the delightful Patrick Novak in response to the TV Show, “60 Minutes Australia” who covered a report on NIPT, the controversial test that, in their words, could eliminate Down syndrome.

I’ve stayed quiet on the subject mainly because the response the report got from some of their viewers, left me feeling utterly deflated and that this battle (the battle to get people to see that Down Syndrome is such a small part of Oscar and how we see him) is too hard a one to fight this time. But deciding that staying silent is not really my style and because I have this platform to say my piece, I decided better of it. So here goes…

Before I go on though, another of the comments I read-

“Wait till you still have to give your kid continence care when he’s 50 yrs old and your 85 year old hands find it too hard. Thats what happens to downs syndrome grown ups” was a quote from the equally articulate Lisa De Lace

“For those who want to keep the downs syndrome gene, its like keeping the rectal cancer gene alive” was another gem from her later on in the thread

And a particular favourite of mine, Sarah Marie Miles commented — “What a selfish decision to allow a child, whose quality of life will be no better than a dog, to live”

So here’s the thing.

My first thought was that these people (and believe me there were a lot more) don’t seem to possess a single brain cell between them all. “IndepenDANCE” Patrick? Really??! But that would be me being an arsehole and stooping to their derogatory level right?… So I try to rise above it.

Secondly, referencing the “I’m REFUSING my taxes being spent to pay for the stupidity of their mothers” (one of the most common arguments people seem to raise regarding the fact that someone with DS would cost the country a shed load of money over the years – Disability Living Allowance, Benefits, NHS bills etc etc. I find myself (and again I’m well aware I sound like a total arsehole here), hoping that at some point in their lives, they or perhaps someone close to them, will find themselves needing the NHS or benefits. The arsehole in me, finds myself hoping they’ll have a car crash, end up disabled and need the NHS really badly. Or get so addicted to crack cocaine that they won’t be able to work and will find themselves on benefits. And when I’m feeling like the worst arsehole of all, I find myself wishing, that they one day they might find themselves in a position where they’ll need it all, for the rest of their lives – DLA, the NHS, benefits, the lot… because – How do any of us know if any of us will be struck down with Dementia, Alzheimer’s, the big C tomorrow and need all that money we’ve paid in taxes over the years, and a whole load more? None of us know. And they better hope that karma doesn’t come and bite them on the butt hey.

Oh and by the way, i’m not likening DS to an illness. Just that people with DS are eligible for all of the above because of some of the challenges they face and because it helps them. Helping those who might need more than others is a good thing surely?

My main gripe here though is people are forming opinions without really knowing the facts. Without having met anyone like my Oscar and making a judgement on what they think his life is like or will be in the future…

Yes, having a child with DS comes with its challenges but because of early interventions and the fact that our kids are being born into families where they’re loved and valued (instead of being institutionalised like they once would have been), they’re thriving.

Yes, some children/adults with DS do better than others but in the same way, isn’t that true of those of us considered “typically developing”? Before I had kids I made a living prancing around a stage because, lets face it, some of us were never destined to be brain surgeons. We all have different IQ’s, different levels of intelligence right? We’re all different.

Has it really come to this though? Are the comments that these people left after watching the show, what they really think? Are there really such cold, heartless, narrow minded people in the world, who think it’s ok to say such things? I mean even if they think it? I guess the answer is yes.

Can anything be done to ever change their minds? Probably not.

For the record Australia, and all those other countries, including us here, so hell bent on eliminating Down Syndrome… I really don’t think we ever will. For there will always be those people who choose not to screen. They’ll also be other people like me, who won’t be offered the NIPT (Harmony Test) because in my pregnancy, I was considered Low “Risk” and wouldn’t have been deemed eligable. They wouldn’t have offered it to me because the screening they do, to work out who should have the test and who shouldn’t, isn’t worth the paper it’s written on. They get it wrong. Oh and even if you do have the NIPT and “get the all clear”… they sometimes get that wrong too. So yes, there may be fewer, but they’ll always be people with DS in the world

I would so love for these people commenting, to spend a day with us. To see Oscar for who he is and not just his diagnosis. For them to understand what a huge impact he has on so many people who have the privilege to be around him. A little boy whose life I value for everything he is and everything he has brought to us as a family. He’s not a burden. Far far from it. And if we are ruling someone out on the basis, that as his Mother, i’ll die before him and he’ll be left costing our government too much money, then I think it’s become an even sadder world than I already thought.

I may have said too much here and I may (definitely) have come across as an arsehole (I don’t really wish ill of anyone) but I can’t tell you how much hearing people talk this way about your child, hurts.