Family fun at Center Parcs

 image
I don’t know about you, but with two little boys, (Oscar- 3 years and Alfie- 18 months) and currently 7 months pregnant, the prospect of a long car journey or having to get on a plane, to go on holiday may have sent me over the edge. We had had three choices this year. We either braved the holiday abroad, stayed home and didn’t go away at all (but with a baby on the way, this could be the last holiday we would be having for a little while) OR we booked to go to Center Parcs in Woburn Forest. We chose the latter for obvious reasons. Plus, I was lucky enough to win our break as a prize for being voted Best New Blog at The MAD Blog Awards last year so we were excited about what Center Parcs had to offer. Our car journey only took 1 hour 10 minutes, door to door, which was brilliant. The kids slept pretty much the whole way there (winner) and thankfully Chris and I didn’t have a chance to argue – our most favoured place to have our little disputes, is in the car… the disputes are never of any importance… usually about my navigating (or lack of) or his appalling driving skills!
All calm and collected... for now!

All calm and collected… for now!

Arriving at Center Parcs was smooth sailing – aside from a bit of a queue to get in, mainly due to us arriving bang on check in time, which was an error on my part. I had paid an extra supplement so that we could be closer to the centre and not have too far to walk (Yuuuup, I’m THAT lazy at the moment) and I don’t think I could have been happier with the positioning of our lodge. We were literally opposite to the main square, swimming baths and shops. It was perfect.

 

A hop, skip and a jump away

A hop, skip and a jump away

I had chosen to stay in the Executive Games Lodge. The reason I’d chosen it was because we had invited my mum and dad with us, along with my sister and her two children so we wanted to make sure we had enough space for all of us. Five days with 5 adults and 4 children, all 4 years and under, could have been carnage but refreshingly, it was actually rather fun.

Oscar with his cousin Bella

Oscar with his cousin Bella

image

I cannot talk highly enough of the lodge itself. Woburn Forest has been open for a year and the quality of the lodge and the grounds (nearly 400 acres!) was second to none. They have thought of everything. From wine chillers (notice this being top of my list, too bad I can’t indulge at the moment), to TV’s in every room, a DVD player, a pool table, a BBQ outside, a flashy button on the bath that when you pressed it you had your very own jacuzzi (much to the delight of my boys)… it even had a sauna, for goodness sake, which Chris just thought was amazing. Because we were in the lodge we were entitled to a maid service, which meant a team of cleaners came in and changed sheets and towels, emptying rubbish etc. A real added luxury.

Bubbles and fun!

Bubbles and fun!

Our Lodge

Our Lodge

The biggest draw for us though, were the swimming pools. We knew that Center Parcs was famed for its fantastic pools and Woburn Forest didn’t let us down. The boys sported their brand new life vests and were ready to go. They absolutely loved the pirate ship, with the slides and the water shooting up from the floor. The toddler pool was a fab place for them to have a paddle and play on some of the water fixtures available. They weren’t the biggest fans of the wave pool but perhaps that’s because they’re just a little bit too young at the moment. Chris assured me that the rapids were great, along with some of the slides which unfortunately I wasn’t able to partake in due to pregnancy. No wine OR rapids/slides… this pregnancy lark is a bit rubbish really;0)

Oscar

Oscar

Alfie

Alfie

I did, however, get to spend some much needed time in the Aqua Sana Spa, thanks to my lovely husband Chris, who had booked me a treatment as a surprise. He booked it for 6pm which meant I missed the boys’ teatime and bath time which, at the risk of sounding mean, was a treat in itself. Almost an hour of leg massage, bump wrap and facial, all specifically designed for pregnancy, 55 minutes to myself but mainly 55 whole minutes of peace and quiet. The spa itself was beautiful, the treatment divine and I loved that although friendly, the staff weren’t in your face trying to do the big up-sell on products. Even if she did mention that I had “hormonal congestion” in certain areas of my face (to you and me, she meant spots!). After my treatment, I could chill out in one of their relaxation rooms, where I may or may not have stayed a little longer than I should have, just to enjoy some extra peace and tranquility. Perfect.

Aqua Sana - Bliss

Aqua Sana – Bliss

The other big pull for us with somewhere like Center Parcs is the selection of playgrounds for children. When you have kids the age ours are, other than swimming, it’s quite a hard age to entertain them with activities. I mean it’s not as if they’re going to be able to make full use of the tennis courts or sports bars, is it? But what I was pleased to see, was that they not only had two playgrounds for the children, they also had soft play areas in a lot of the bars and restaurants.

Soft Play fun with Grumps

Soft Play fun with Grumps

How amazing that when you sit and have a meal in Strada, when the kids get a bit ratty because it’s a little past their bedtime, you can put them in soft play and really tire them out before you put them down for the night. Good thinking Center Parcs.

imageimage

Oscar and Bella enjoying the playground

Oscar and Bella enjoying the playground

I had booked the boys and my niece, Bella, on the activity “Mucky Pups”. Advertised as messy play, I was pretty sure it was going to be a hit. Sand, Painting, Glitter, Gluing, Playdough and Drawing. What more does a little person need? The lady who ran the session was engaging and friendly, making a huge effort to learn every child’s name. I would highly recommend enrolling your child/children in an activity like this one as our children thoroughly enjoyed it and it was something different to do to break up the day

Mucky Pups

Mucky Pups

Mucky Pups

Mucky Pups

You might notice that Alfie, my youngest, isn’t in any of the messy play pics… and you’d be right. That’s because he was in A&E in Bedford, 20 miles down the road. That morning he had been sat in one of the armchairs in the lodge and fell backwards cutting his head open on the corner of the coffee table. We had taken him to the medical centre on site, and the staff were extremely helpful and knowledgeable but because it was classed as a head injury, he had to go to A&E. Alfie and Chris spent the best part of the morning there (while Oscar and I enjoyed Mucky Pups) but thankfully after a clean up and a bit of glue to seal it back together, he was on fighting form again. Unfortunately, it meant that he missed out on the last couple of days of swimming, which was disappointing, but it meant that Alfie and I could have a bit of a rest and enjoy the delights of Starbucks together, while everyone else in the family went swimming. Did I mention they have two branches of Starbucks on site? You can imagine my excitement!

Bedford A&E

Bedford A&E

The site itself was easy to get around and the fact that there were no cars to worry about was brilliant. The only thing you had to be mindful of when walking around was people on bikes. We had taken Oscar’s Rollers Trike, which I was lucky enough to have also won for receiving the MAD Blog Award. He has only really just started getting the hang of using his feet to push himself along so Center Parcs was a great place to practice but I’m sure it won’t be long until he’s got his confidence and is whizzing around on his trike!

Oscar and his Rollers Trike

Oscar and his Rollers Trike

Probably the main highlight for me, as cheesy as this may sound, was taking the kiddies to the disco. Neither of mine had ever been to a disco before so one night after dinner, we walked over to the sports bar and let them loose on the dance floor. Seeing them have so much fun was priceless. They loved the disco lights, the music and watching them all dance was what a family holiday is all about for me.
As the holiday drew to a close, we decided that as the weather was gorgeous, we’d have a BBQ. We couldn’t have picked a better evening for it. It truly was a perfect end to a perfect holiday.
Family BBQ

Family BBQ

I cannot thank Mary Lewis @micommsPR who works for Rollers World who sponsored my category at the awards. Rollers World not only gave us Oscar’s Rollers Trike, they so very generously also gave us the vouchers for Center Parcs. So grateful . Also, thank you to Lizzie Jackson, who is PR for Center Parcs Head Office who went above and beyond in ensuring our stay was the best it could be. And of course to my family – my mum, dad, sister Clare, nieces Bella and Evie, my husband Chris as well as little Alfie. Thank you all for coming and making my time there extra special.
My little family

My little family

Finally, to Oscar, my eldest son, the reason I started writing the blog in the first place and the reason we were lucky enough to go to Center Parcs. Without you, none of this would have been possible, so Thank YOU. We love you, little man.

To find out more about Rollers World, Click on the link below

http://www.rollersworld.co.uk

imageIMG_1327IMG_3874

Blog of the Year Finalist? – MADness

2014 MAD Blog Awards

2014 MAD Blog Awards

It may sound odd but I started writing originally, as an outlet. Somewhere where I could write my most personal thoughts down and once I started, I found I couldn’t seem to stop. It never even occurred to me that I would actually bother publishing it. I mean who would want to listen to me waffling on? But 18 months down the line, I have and I now call it my online therapy. When my eldest son Oscar was born (almost 3 years ago) unbeknownst to us, he had Down Syndrome I literally thought my world was over. I wanted to run. Run out of the neonatal unit, down the corridor, out the door of the hospital and keep going. It was a fear of the unknown I guess. Fear of the future and what lay ahead for us as a family. This wasn’t what i’d signed up for, I thought. I wanted a “normal” baby like everyone else. Not one less than perfect. Little did I know, 3 years on my little boy to me, IS perfect. I guess it was naive of me to think that life always goes the way we plan it too and even though my life looked slightly different from the way I thought it was going to look, I can now honestly say, hand on heart, that life is good. The blog has given me a voice, initially it benefited me and my need to get everything off my chest… but now it seems to have helped new parents dealing with a pre or postnatal diagnosis of Down Syndrome who feel that the future looks bleak. I’m told that seeing Oscar and hearing about his progression has been a comfort to them. I don’t sugar coat things though, sometimes life sucks… But doesn’t it for everyone at times? It’s also been about the re-education of people who haven’t necessarily got any connection with Down Syndrome. It’s about making them see that the world isn’t over or sad just because you have a child with Down Syndrome and that life very much goes on.

image

The MAD Blog Awards last year, was the first ever awards ceremony I had ever been too. I felt a bit of a fraudster, as i’d only been blogging such a short time in comparison to some of the blogging legends that were in the room, but I was thrilled to be a part of it nevertheless. I had started blogging at the beginning of that year and I was up for Best New Blog. I don’t think I really got the magnitude of the parenting blogging community until I attended that event and saw it for myself. These people all seemed to know each other and I wondered how?

Thankfully i’d had the foresight to buy a M&S Gin in a tin (Gin and tonic) for the train journey into London and that, combined with the glass of champagne on arrival, meant that mingling with complete strangers was eased in my slightly squiffy state

Photo Credit - tomarber.co.uk

Photo Credit – tomarber.co.uk

I had an amazing time, meeting fellow bloggers and sponsors of the event. It honestly didn’t occur to me for one second that i’d actually win. But I did!!! Crazy and ridiculous. But so incredibly touched and honoured (if slightly inebriated by the time I collected by award as I genuinely didn’t think I was going to have to walk up on stage and deliver a speech. Goodness knows what I actually said)

Photo Credit - tomarber.co.uk

Photo Credit – tomarber.co.uk

And so one year on, I find myself nominated again. This time though for blog of the year. Little old me in the final 6 for Blog of the year? Double crazy. I’ve seen the competition and it’s tough. These ladies are heroes and undoubtably, are more deserved to be in this category. But I honestly do thank each and every one of my followers, likers, friends and family that took the time to vote for me to get me into the final. Thank You all

Photo Credit - tomarber.co.uk

Photo Credit – tomarber.co.uk

The MAD Blog Awards 2015 are taking place in September this year and there is little more I can do now… other than choose the obligatory new dress (eeeeekkkk) which of course, is one of the top priorities (I know this sounds very sad but hey, with 2 toddlers and a baby on the way, I don’t get out much). The Blog of The Year is chosen by a panel of judges, unlike all the other categories that are calculated on the numbers of votes, so thankfully, I can now sit back and relax and wait for the awards themselves. Please do take the time to look at the blogs and categories the MADS are showcasing, as theres some amazing ones in there. Hey you could even vote for your favs, I know I will be

http://www.tots100.co.uk/vote/

When I walked into the ceremony last year , if you remember, I had wondered how all these people seemed to know each other. They had all met virtually and were now friends. I liked that. Amongst the bloggers in that room, they all wrote about different things – Some were about getting through the day with small children. Coping with them, holidaying with them, feeding them, photographing them but then there were some I knew very little about and perhaps opened my eyes to a different world again – post natal depression, additional needs, single parenting, having a baby who was born sleeping. Such wide and diverse subjects that thankfully I now have an insight into from following other peoples stories. They all have one common connection though… We are all parents. We all “get” this mad journey we call life and for that I know I for one, am extremely grateful

image

Good luck to all the bloggers in all the categories. I’ll be following your posts with continued interest and can’t wait to see you all again in september x

To see who the MAD Blog Awards 2015 Finalists are, see link below

http://www.tots100.co.uk/2015-finalists/

IMG_1327IMG_3874

“Life is like a box of chocolates, you never know what you’re gonna get”

Oscar at 12 days old

Oscar at 12 days old

When I open my “Don’t Be Sorry” emails, the number one reason people often message me, is when they have had a baby with Down Syndrome and are looking for some sort of support. They’re reaching out, I guess. They’re asking how I felt in those early days, weeks and months. Asking me if it’s “normal” to feel the things they’re feeling right now. I figure they’re wanting some sort of validation, just as I had sought out when I had found out my first son had Down Syndrome, that it was OK to be feeling all the things they were currently experiencing.

The second most popular reason people message me is when someone has decided they might like to have another baby or are indeed pregnant, having had one previously who has Down Syndrome. When people write, it is usually because they have wanted to know how I felt having Alfie (my second son) or am feeling now being pregnant with my third (due beginning of August). I get it. I totally get it and although by no means an expert on the subject, I am more than willing to share my thoughts on having another child after having a child who has had a diagnosis of Down Syndrome.

image

Let’s just say the lady in question who has been messaging me is pregnant again. Elated. There’s a word. She’s just found out she’s pregnant and she’s over the moon. She had always wanted a sibling for her child and she can’t wait to watch their relationship grow. But mixed with that elation is fear. She’s fearful of what happened before. How, prior to having a first child, her world had seemed pretty average. Pretty normal if anything. Perhaps she had known about her first baby having Down Syndrome and made the decision that it hadn’t mattered and wanted to have her baby regardless. Or perhaps like us, she hadn’t known and when they were born, the shock literally knocked the wind out of her sails. Either way, in my opinion (and I appreciate all of this really is only MY opinion), going on to have another baby afterwards, is scary stuff.

Alfie's (Oscar's little brother) entrance into the world

Alfie’s (Oscar’s little brother) entrance into the world

For those of you who have been following my blog for a while, you may have read a post I wrote, called “To test or not to test – No judgement”. I wrote this shortly after I started writing the blog and just after I had given birth to Alfie, and I shared my views about extra screening/invasive testing and what I had done when I found out I was pregnant for a second time. I chose to have an amniocentesis with Alfie. I wasn’t proud of my decision. Of course, there were the risks of losing him but, in truth, I felt like I was being disrespectful to Oscar. And when the test came back that Alfie had been cleared for Down Syndrome, I cried with happiness but mainly I cried because as I came off the phone, Oscar was sat there looking up at me with the biggest smile on his face and I felt sad. Sad, that it may look like I hadn’t wanted another one like him.

Oscar at 22 months

Oscar at 22 months

At the end of that blog post I wrote that in hindsight, perhaps I hadn’t needed to have that amnio. Knowing that Chris and I can cope with life, whatever it throws at us and should I be lucky enough to fall pregnant for a third time, I wouldn’t need to have invasive testing.

So why am I sat here today, pregnant with my third, admitting to you, that a few months ago I had another amnio to check all was “ok’ with my unborn baby? I shall explain…

The truth? I thought I’d be stronger. I thought that third time round I wouldn’t need to know. But for me, the thing I couldn’t let go of was that initial shock the first time. The feeling that our world had been turned upside down. And truthfully, I didn’t think I could go through the rest of my pregnancy wondering, what if that were to happen again.

Our 3rd baby... due August 2015

Our 3rd baby… due August 2015

Of course I knew there were other methods of screening/testing on offer to me. I had been quite prepared to go up to Harley Street in London to have a Harmony Blood test carried out. But at a 98% accuracy rate, I figured I could still be the 2% that they got it wrong for. I’ve never had that much faith in statistics, particularly since having Oscar. When we were pregnant with Oscar, I was considered “low risk” of having a child with Down Syndrome, I had a 1;350 chance. Let’s face it, if I had 350 boxes in front of me and only one of those had a million pounds in… what are the chances of picking THAT very box? With Alfie and this current pregnancy, my odds were significantly better than the first time round, even though Oz was on my records and of course I’m older now… they were in the thousands. But it still didn’t sit right that if I’d been that one before, I could be again.

Alfie at a few weeks old

Alfie at a few weeks old

What I do know is that had this pregnancy come back that he/she had Down Syndrome, I’m certain we wouldn’t have done anything about it, but as I’ve always said, for me, the reason I needed to know definitively, was to be prepared. With Oscar, the shock was immeasurable and in those first few months I struggled. Had we had another just like Oz, sure we would have coped. Hey, we probably would have handled it way better, but I just needed to know for sure.

And for the record, out of many friends who have gone on to have a baby after having had one with DS, I am in the minority. Hardly any of them have felt the need to bother with odds, or screening, or blood tests, or invasive testing. They have been stronger than me.

Oscar washing Alfies hair???

Oscar washing Alfies hair???

Last year, a lady messaged me about her unborn baby, saying that they had had a prenatal diagnosis of Down Syndrome and that she, along with her husband, didn’t know what to do. However, she felt more at ease about it than he did. It’s not the first time I’ve received a message like this one and I felt comforted that she had felt she could approach me with her fears and concerns. I told her our story. How it was slightly different from hers and that we hadn’t known prior, so didn’t have that choice to make. I told her that Oscar brings more joy to us than we ever could have thought possible. That yes, there were hard times but then who doesn’t have them? We had quite a few messages back and forth. I asked her to do her research. Not just to think of the outdated stereotypes out there. I told her our kids were thriving. That people with DS were getting jobs, living independently, getting married. I talked of hope and sure, there were ups and downs but isn’t that what life’s about anyway?

Oscar and Alfie last August 2014

Oscar and Alfie last August 2014

It’s not my place to say what happened here but my point is, with this invasive testing, we are being given the right to choose. In some cases, to decide whether parents want to keep their unborn child or not. Would it be better that we weren’t in the know? If there was no testing available and we simply had to wait and see, how differently would I feel about approaching this pregnancy then? All I know is that it was my choice to make this time. I don’t judge others for the choices they make, I just ask that they remember that the reality of the situation is never as bad as your initial fears. I am well aware that even though this current pregnancy has come up as negative as far as Down Syndrome is concerned, there are other things that babies can be born with, or complications in childbirth. Whatever life throws at us, I know we’ll be fine.

Oscar at 9 months

Oscar at 9 months

I had two friends of mine round when I got the call from the hospital to let me know my amnio results this time. They were two friends who had children with Down Syndrome themselves. I had told them I was expecting the call, so when I came off the phone, I told them the results. Our reaction was interesting. There were no tears this time. Just a sense relief from all of us, I guess. Happiness, smiles, “that’s wonderful news”, “I’m so relieved” were along the lines of what came out of my mouth that day. It was after this, that we sat quietly for a second. Reflective. For we realised, we’d just celebrated that this unborn baby didn’t have Down Syndrome, even though the three of us all have children with Down Syndrome, who we absolutely categorically love and adore. What was that about, we asked ourselves? We didn’t talk anymore about it but I’m wondering if, like me, in that moment they felt just a little ashamed.

image

I’m sure in writing this, i’m opening myself up to fellow parents of children with DS, saying that it would have been irrelevant to them and they wouldn’t have needed extra screening or testing. I am aware of that and I fully respect their views. I also know that since writing the blog, I have had people contact me, who have said they have been in the “high risk” category of having a baby with DS and since following Oscar’s story, they feel strength and encouragement that they could cope. I love that.

Love him

Love him

It’s now up to medical professionals to follow suit and help promote, that just because you might have a baby with a DS diagnosis, that it doesn’t have to be the end of the world. It’s my hope that both screening midwives and consultants understand that it’s not the bleak outlook they might think it is for a lot of people and that a termination leaflet shouldn’t be the first thing that gets handed to expectant parents. Both my consultant and screening midwife didn’t even flinch when I said that whatever the outcome of the amnio, we would be keeping the baby. Perhaps they could see the certainty in my eyes and knew not to mess with me :0) But I know for a fact that there are hundreds of cases out there, where expectant mothers have been told their unborn baby has DS and have immediately been advised of a termination. Even when someone has already had a baby with DS, they have assumed that because they’re having an amnio, CVS or harmony test, that the reason they’re doing so, would be because they want to abort. It’s so very sad that they feel like this and all perhaps through lack of understanding

image

It wasn’t that I didn’t want another Oscar. Hey, sometimes he’s a lot easier to handle than my demanding little 18 month old! But what I wanted was to be prepared. To have the knowledge. To feel just slightly more at ease that this birth wasn’t going to be the foggy memory I have of Oscar’s and that I wouldn’t spend those first few days, weeks and months worrying unnecessarily about the future. I would know what to expect this way. I’m guessing if you asked any mummy of a child with Down Syndrome, would you change anything about them? I’m pretty sure they’d say no. Would they take away some of the hospital appointments, the worry over sending them to mainstream or SEN schools, the prejudices, the stares, the biting ;0)… of course they would. But would they take away the actual DS? I’m guessing not, for without it, they wouldn’t be the little person they are. That day back in July 2012, we opened the box with our million pounds in it. Our Oscar. I’d call that pretty lucky.

Our Oscar xxx

Our Oscar xxx

IMG_1327IMG_3874

Out Of Sync?

I’ve had an emotional few weeks. And before you start feeling sorry for me. Please don’t. You see, my emotionalness (I know that’s not actually a word) is bordering on dramatic. I’m guessing it has a little to do with Oscar and some of the added worries we have along the way with him but perhaps more so, it’s EVERYTHING to do with me being 28 weeks pregnant! You will read the below and probably think, “What’s her problem? It’s really not that big a deal”, but when you’re pregnant, and I don’t think I’m the first to feel like this, you kinda turn a little loopy at times. When you get verification from your husband, who bares the brunt of said loopiness (he’s had to put up with these slightly crazy ways three times over now) AND your sister, who tells you that “you’re usually a lot stronger than this”… It tells you that perhaps you may be slightly overreacting occasionally

image

Aside from the fact that Oscars STILL going through his biting stage (yeah he stopped for about 5 weeks… lured me into a false sense of security…but then started again <sigh>) and that causing me a lot of stress, my wobbles started when I was advised, (and this was some advice I greatly appreciated, I might add) that I read a book called “Out of Sync Child” as it may help me “understand” Oscar.

I’ll start at the beginning – The other week, Oscar, Alfie and I went on a trip to the supermarket, all in good spirits. I put Oscar and Alfie in the trolley and I set foot inside the supermarket, but from the moment I did, Oscar cried. When I say cried, I don’t mean uncontrollably, it was more a moan of sorts. When he’s upset he puts his finger in his mouth and chews down on it. It’s something he’s done since he was a baby and people often comment that he’s teething when actually, he does it when he’s upset or unsettled.

image

 

Presuming it was bit of a protest at being cooped up in the trolley and not wanting to pander to him, I carried on with the job in hand. Knowing Oscar as I do, I thought he’d stop the waterworks soon enough. He’s usually such a happy little boy (there’s that annoying cliche that every parent of a child with DS hates) but in Oscar’s case for the most part, he really is! I was sure he’d stop… but he didn’t. I tried everything. A drink, a snack, letting him play with my phone (I was desperate), singing, dancing down the aisles (me not him obvs), you name it; I tried it but he was having none of it. After a long and stressful supermarket shop (I’m pretty sure this convinced me to do my grocery shopping online from now on), we left the shop… only for him to stop his moaning/protesting the second we exited the building. I expected him to be unwell later that day or miserable, but he wasn’t. He was as happy as Larry. I put this to the back of my mind… for a while at least.

image

The next day we had Consultation Day at our local support group with some of Oscar’s therapists. I’ve talked of this group before but for those of you that don’t know, every Friday we meet with Oscar’s peers, all of whom have DS and the children go from room to room, doing their different therapies. There’s OT, Speech Therapy and Early Years Teaching and of course in-between, the parents get to chat, while the children play. On the first week back every term, the therapists talk to the parents about their child’s progress, areas of concern and what’s next for them.

It was when I went in to see his Speech Therapist that things started to become a little clearer. We agreed Oscar had made great progress, that we should continue working the way we had been and although his concentration wasn’t the best, it had absolutely improved. I felt happy that she had been so positive. She is an amazing therapist and we’re so lucky to have her. But I had had one thing on my mind, that I had wanted to address. When Oscar’s concentration wavers, she will often give him a chewy or buzzy which he immediately brings to his mouth, to either start chewing down on, or to feel the vibrations of the buzzy, through the mouth. I knew that for whatever reason it worked and that invariably, the distraction was all he needed to continue with the session but in my naivety, I asked why.

image

She started to explain that Oscar is a “Sensory Seeker”. She was explaining like I already knew this. And although everything she was saying about him I had agreed with, I didn’t realise there was an actual label for it or indeed an explanation. She said that Sensory Seekers simply can’t get enough of anything, literally. And that anyone who suffers from the disorder (ouch, I hate that word) are constantly in search of ways to arouse their nervous system. She likened it to someone like you or me. She said some people feel the need to incessantly tap their foot. It could be a comfort thing or a concentration thing, but that you or I understand that foot tapping is what that person needs to do to remain calm and grounded, whereas someone like Oscar might be feeling a bit odd, but can’t work out what he needs to satisfy that.

She also explained that Sensory Seeking is a subtype of Sensory Processing Disorder and that there are many different types of SPD. He could have had the reverse, in that he shies away from sounds, touch, smells, tastes, but instead he seeks them out.

When I told her about the supermarket, she said it could have been any number of things bothering him, from the lights, the temperature, the background noise, things that perhaps weren’t noticeable to me because I have learnt how to deal with those changes in environment.

So here’s where the book came in. She advised me to take a look at a book that was recommended for Sensory Seekers. It was called “Out of Sync Child”, and as I said, all the while being so grateful that she was helping me understand, I couldn’t help feeling wobbly that I needed to read a book with that title. I mean, could it sound any more… depressing?

Whilst waiting for my amazon order to arrive, I took to google.

I have advised people on here not to Google stuff. It’s the devil. If you have a headache, you think it’s a tumour. If you have a child that doesn’t sleep, there are literally 10 million reasons to help them (and no quick fix solution on which one is the best for you) and if you have a child with DS and you Google it… well, it can be the bleakest, most depressing thing in the world, according to some of the search results. Every once in a while though, Google is your friend. And in this, reading up on sensory seeking, Google helped me see things a lot more clearly.

It was literally like reading a blow by blow account on Oscar. I won’t list all of them. There are a lot. But these in particular jumped out at me from the screen:

1.Loves loud noises, often watches tv and listens to music very loudly (This IS Oscar. He loves anything with the volume turned up or any toy that makes noises. He loves the traffic lights when they beep and an ambulance whizzing by with the sirens blaring… Claps his hands, shouts and just generally gets excited at all of the above)

2.May frequently make noises just to hear them (When we went round to a friend’s house recently, they had a fire guard, that when you shook it, it made a lovely loud noise. This was a great source of amusement for Oscar and even though I repeatedly took him away from the guard, he was drawn to it all afternoon)

3.Will put anything in their mouth in search of oral input, such as chewing or crunching sensations (He loves crisps for this reason I’m sure… and his latest, pomegranate seeds, I’m sure because they crunch in his mouth)

image

4.May love or crave bright lights (Always has done)

5.May love to spin in circles (He does this, not all the time but when he spins, he’ll often do it a few times as he clearly loves the sensation of dizziness)

6.Fidgets, has difficulty sitting still at times and takes bold risks (Oscar to a T)

7.May frequently jump from high heights (Ummmmm this is definitely him. He has no sense of fear but will often repeatedly jump from the arm of the sofa, rolling into the chair, then roll to the floor, like some kind of stuntman… rest assured we do TRY to stop this behaviour… It’s an ongoing battle)

image

8.May repeat certain movements almost endlessly just for the sensation (See above <sigh>)

9.Frequently overstuff their mouth when eating (He has done this from a young age, although he’s much better now. When I sign “wait” for example, he’ll make sure he does just that before he stuffs the next grape in his mouth)… Or Mcdonalds chip

image

10.Problems sleeping (Although not awful, and I mustn’t complain because I know it could be a lot worse, he can have periods of time, where he’ll be wakeful throughout the night)

11.Frequently attempts to engage in rough play, such as wrestling (Tick… although so does Alfie, Daddy and Grumps- Oscar’s grandad- so you can’t really blame him)

12.High levels of energy (HE.DOES.NOT.STOP.MOVING… ALL.DAY)

image

I remember a while back I posted a picture on my page of Oscar holding a toy that sung a little tune. He was holding it to his mouth and the picture received a lot of comments from other parents saying that their children do, or had done something similar to this in the past. We concluded between us that it was probably down to the vibrations he could feel through the toy… and so using a buzzy in his therapy sessions or a chewy to help calm him a little, now makes perfect sense.

IMG_1409

And so my point here? I know on the grand scheme of things this isn’t a major deal. It’s just something that Oscar and I are going to have to try and manage and understand. His speech therapist told me she knew a little boy, who didn’t have DS but had another form of learning difficulty, and that from the age of 5, had hated P.E at school. It wasn’t until he was 9 that he could articulate to her, that it wasn’t because he hated P.E itself, it was that he didn’t like the way his feet felt in his plimsolls. I guess this just made me feel sad. Would Oscar be like this? Would he not be able to find the words to tell me what was bothering him in the future? Frustrations in communication come hand in hand with having a not quite 3 year old, but as he gets older and may not be able to let me know what’s troubling him, there lies the problem and all of which can contribute to behavioural problems.

I figure all I can do is watch and learn. What are his triggers? Why is he acting the way he is and is he just being a typical little boy, or like in the supermarket, is there something upsetting his balance? I have read that there are treatments to explore, for example, putting him on a sensory diet or doing therapeutic listening, so in time I will take a look. I will say that finally understanding some of the differences we had noticed in him, has been a huge blessing and relief. The whole thing is fascinating and perhaps my slightly dramatic hormonal state at the moment is kinda adding to my anxiety about it.

image

As a parent, I can spend hours on end worrying about my child – The truth of the matter is, he’s Oscar, regardless of any label or diagnosis he’s given. He’s our little boy, who is loved more than ever and will continue to do brilliantly because simply, that is what he does by just by being him.

image

IMG_1327

IMG_3874

‘All kids need is a little help, a little hope and someone who believes in them’

I remember in the mid 80’s, being around about 8 years old, taking a trip up to London with my family and being approached on the street by a man with Down Syndrome. I was walking a little way behind my family, not so that they were out of sight of course, but more than likely, I was dawdling behind them. Being the mid 80’s, I had been channelling my inner “Sarah Ferguson” (Sarah Ferguson as in Fergie, who went on to marry Prince Andrew) and that day I was sporting a huge bow in my hair! A dreadful fashion faux pas in hindsight but I digress. The man I spoke of approached me. I remember he got right in my face and told me he “loved my bow” and that I looked “beautiful”. I remember the way he talked and thinking back then, that he sounded a little odd. I remember feeling like he got inappropriately close to me and that I didn’t much like that feeling, but mostly I remember feeling panicked. He wasn’t alone. I imagine he was with either his parents or a carer. They backed up his comment about my bow and continued on their way.

image

But that day has always stuck with me.

It was the beginning of my irrational fear of people with DS. I’ve talked about it briefly before and perhaps I am being a little too honest here (it is not my intention to cause offense and I do have a point I’m trying to make, which I’ll come to later, I promise) but that was really the beginning of a series of events that I can now look back on and wonder how ironic it was that I was to go on to have my own child with DS.

image

There was the Sarah Ferguson bow incident, then there was a young boy with DS in my local dance school when I was around 12 years old, who intimidated me; a whole bunch of young adults with DS who visited my college when I was 18 years years old, who just seemed, well really over familiar and then after that, no real interaction until later in life.
In every instance, there was something about these individuals, which made me wary. They were different and I felt nervous around them.

I’ll come back to the point I’m trying to make later…

A couple of weeks ago, it was 9.30am and I had just dropped Oscar off at nursery. It wasn’t unlike any other Wednesday morning, only that this day, I felt on edge. You see, over the last few weeks Oscar has been going through a bit of a phase. He’s taken to biting. I thought at first it was just me that he was biting, after all I’m the person for the most part that tells him to stop doing things that he shouldn’t be doing. I thought it was his way of retaliating. Of letting me know he wasn’t happy with being told off. And although not ideal, I felt comfortable that I could control it to an extent. Over the last couple of weeks however, he has taken to biting his friends, something I am completely and utterly mortified about. Now I appreciate there are so many much worse things happening in the world at the moment, but dropping him off that particular day, I felt nervous. I was standing talking to the nursery staff, who for the record couldn’t have been lovelier or more understanding if they tried. I could see Oscar across the room with his friend and she was giving him a hug… she must have hugged him about 5 times in a row and in-between each time, they kept pulling away from each other and giggling. Even though it ended and they went on their way, it took everything in my power not to go over there, just in case he might have bitten her, as there is nothing worse than seeing your child hurt another child (well, there is of course; national disasters, terminal illnesses, murder… but you get what I’m saying).

We have nicknamed Oscar "JAWS"

We have nicknamed Oscar “JAWS”

On arriving at the nursery last week, I was told he’d bitten a little girl, three separate times throughout the day. No one else, just this one little girl. MORTIFYING! I knew that the nursery couldn’t tell me who he’d bitten (nursery policy) and that although they had to tell the little girl’s parents that she’d been bitten; equally they couldn’t tell them who the culprit was. It was pretty obvious however that when the parent questioned their child about who bit her, being almost 3, this little girl was going to be more than capable of saying “Oscar did it”, of course. It turns out the little girl in question was a friend’s daughter, who again couldn’t have been more understanding and nicer about the whole thing, but it was still embarrassing all the same.

I always remember when Oscar was a baby, he growled. He doesn’t do it now, but at the time, I was concerned. WHY is my baby growling? He seems to be growling for no apparent reason. Like the time we went to baby sensory class and everyone elses children were sitting quietly or babbling away nicely. Oscar didn’t though. He growled. People would often comment on it. One of his therapists said she thought it was a little odd (which for the record, this therapist wasn’t a speech therapist so didn’t really have the knowledge to back up her “odd” theory and for the record, using the word “odd” to a relatively new mummy, about her already “different” child, was bordering on sending her over the edge but whatever). I remember being out and about with him and feeling like everyone was looking at him like he was some kind of crazy loon. We’d get into a lift, where of course, especially in England NO ONE dares talk to each other being the stuffy Brits that we are, and in the silence he’d growl. I’d then do my mock surprised “Oscar, what’s that funny noise?” As if he’d literally done it for the first time there and then, to be met with smiles and laughter. Looking back now I’m not sure why I was so embarrassed… It WAS a phase, which he grew out of, after some time I might add. And honestly, the only growling he does now is if we sing the verse of “Row Row Row Your Boat”, with the lion in it, then we of course the growl at the end in true lion fashion.

image

Also I remember a while back, I wrote about Oscar going through a period of pushing his little brother over. Alfie had just started to walk and Oscar would take great delight in body slamming him to the floor and like an international rugby player, pinning him down. I had been worried, I sought advice, I reprimanded him… and it passed. It took a while mind you, but he eventually stopped. I mean, he still sometimes gives Alfie the odd push but then what 2 and three quarter year old wouldn’t? The good part is that Alfie gives as good as he gets now so his match has been well and truly met!

"Just be grateful i'm not biting you today buster"

“Just be grateful i’m not biting you today buster”

But the biting thing seems worse than these other little phases. A push happens and someone can get up, usually unharmed. But a bite? Wowsa it can hurt! And he’s got a good set of gnashers on him now.

We were at a play date a few weeks ago, with a whole bunch of Oscar’s friends. We had all been to music class and then afterwards we went back to one of our friend’s houses for lunch. The children were in great spirits. We’d all had lunch and I knew it was getting to that time of day where both Oscar and Alfie were ready for their afternoon naps. I should have left about an hour before I did as they were tired and subsequently Oscar was wired. If I had been on the ball, I could have stopped him in time… but I wasn’t. I could see that Oscar wanted to get out of the door, but one of his friends, a little girl, wanted to shut the door. There was a lot of pushing and pulling going on. One wanted to get out; the other wanted to stay in. It was a battle of wills, who was the strongest? Who was asserting their authority loud enough? The door was swinging. And then a shriek. A loud piercing cry. It was the little girl. A cry SO piercing that I knew instantly what it meant… She’d been bitten! Oscar had become so frustrated, that he couldn’t get out the door and I’m presuming that he couldn’t put what he wanted into words and so he bit her. That’d make her get out the way surely? And it did of course.

I immediately approached Oscar. “No biting”, I said and signed to him. I then took him over to the little girl who at this point was in the arms of her mummy, inconsolable. “Look Oscar, she’s sad” I said and signed “Say sorry”. I helped him sign “sorry” as even though we have MANY signs now, a list that I’d been so proud to take to his paediatrician and team meeting last week, no matter how many times we use it (and we use it a lot at the moment), just like Elton said, sorry most definitely seems to be the hardest word (sign) in Master Roberts’ world. MORTIFIED.

"It LOOKS like butter wouldn't melt in his mouth... I can assure you it does"

“It LOOKS like butter wouldn’t melt in his mouth… I can assure you it does”

Thankfully, this little girl was ok after a few minutes and thankfully her mummy was understanding. “Children go through these sorts of phases, Sarah”, she said. “It could have been any one of the children here today.” Of course I knew she was right and subsequently, having spoken to other friends and parents of little children, they all say the same thing, but I realised as I got more and more upset by Oscar’s behaviour, that the biting wasn’t the real issue here.

You see, had it been Alfie biting I could accept that people would be happy with the “just a phase” label. But With it being Oscar, I realised I couldn’t shake this one thought going round and round in my head. Would people feel anxious about their child hanging around with him now and in the future, knowing that he could be volatile at times? Would they decide that they didn’t want to have him in their friendship circles, for fear of his behaviours? Perhaps an irrational thought on my part (lets not forget I am 23 weeks pregnant and a little over emotional at the moment) or perhaps, if people were truly honest, it was something they may be feeling. Maybe not so much now, as children of Oscar’s age, regardless of having additional needs or not, still constantly push each other, shout at each other, fight over toys and so on, but maybe in a few years time, when their children are fully aware of the consequences of their actions and Oscar potentially still not quite getting it, would they then turn around and say we’ve had enough of him? I guess that’s my biggest fear in all this. Are people not going to want Oscar in their lives?

So now back to my initial point…

image

I appreciate when I think back to the girl I was with my “Sarah Ferguson” bow in my hair days, I was young. But what if Oscar’s peers feel nervous around him? And even into my teens and early adulthood, having not really been exposed to people with DS and having very little knowledge and understanding, I made a judgement. I give my friends and family full credit here and know that they have lived life long enough not to be so narrow-minded and prejudiced as I once was, but if they were? Could I blame them? I was told this week that amongst a group of friends, one of the children started biting. It turns out, one of the parents felt they couldn’t let their child be at risk of being bitten, so sent an email to the mother, saying that she felt she could no longer mix in the same group. Hearing this, I felt sad. Because surely at some point, every child goes through some kind of phase and although not every child bites, there are many other ways they can vent their frustrations.

I’m hoping with Oscar, people understand. I’m hoping that in time, it will pass. I’m hoping that anyone reading this that knows Oscar and me, knows that I am doing everything in my power to make it stop. To help him understand it’s not acceptable and can’t go on. I’m hoping that people will give him a little bit of a break and give him that time. And I’m so hoping he/we will not lose friends over this. When I was that little girl back then, there were no children in my class at school that had DS or any other disability for that matter. But here’s hoping times having changed. Children are more understanding and accepting… there is that hope at least.

image

It has been a whole 13 days since Oscar has bitten. He’s been to 3 sessions of nursery, playgroups, and music groups and mixed with a lot of children. I don’t for one second think it’s the end of the phase already, I’m aware he has a habit of lulling me into a false sense of security at times…. but it is a start. I’m guessing behind the biting comes frustrations. He’s coming on so much communication wise, both in his signing and the odd word here and there. I’m presuming the biting is a frustration in that he so desperately wants to get his point across, that sometimes, the only way he knows how, is to bite. This parenting malarkey is a minefield. There’s no instruction manual available that tells you how to deal with this stuff. This isn’t the first phase and most definitely won’t be the last. All we can do is put the lid back on the blender from time to time… and hope that there’s not too much of a mess!

Unknown

IMG_1327UK Blog Awards 2015 - Shortlisted Logo

 

‘Facts do not cease to exist because they are ignored’ – World Down Syndrome Day 2015

If I’m truly honest, just over 2 and a half years ago, before I had Oscar, I wanted to be someone that treated people with additional needs just the same as I would treat the next person. But the truth? I felt uncomfortable. I felt especially uncomfortable around their parents. I didn’t understand how they could possibly be ok with having a child with additional needs. I’ve talked about it before but how could they not be sad, when their lives were surely a bit…well, rubbish now? Looking back I realise it wasn’t just ignorance on my part, more about my lack of education on the matter. Now that my eyes have been well and truly opened to a whole new world, I realise I needn’t have felt that way. Sure, it might be a slightly different world, but it’s a still a happy world. You see, parents of a child with DS aren’t asking you not to see a difference. We’re just asking you to give our children a chance because we now know there is much much more to them than we would have first believed. Our children are individuals. They excel in different areas just as the next person does. 

image

World Down Syndrome Day (WDSD15) is celebrated on 21st March every year (21/03) representing 3 copies of the 21st chromosome present in those that have DS. John Langdon Down first described what he though DS was in 1866.

Having DS is just a small part of the person, but it certainly doesn’t define them.

image

Did you know?
People with Down Syndrome…
Are living in their communities with some support
Are often fully included in school with their typical peers
Are going to college more frequently
Are employed as artists, actors, child care workers… Not just your local Sainsburys Supermarket as so many people like to reassure me ;0)
Yes, people with DS are often “happy” but they also, like you and I, experience a whole host of other emotions and feelings. People with Down Syndrome enjoy healthy relationships and some get married.
image
 
Myth: Down Syndrome is a rare genetic disorder.
Truth: Down Syndrome is the most commonly occurring genetic condition. One in every 691 live births is a child with Down Syndrome and there are more than 4 million people with DS world wide. Not so rare after all hey!
Myth: All individuals with Down Syndrome will have severe developmental or intellectual delays.
Truth: Most people with Down Syndrome have cognitive delays that are mild to moderate. IQ is not an adequate measure of the functional status of people with Down Syndrome. People with Down Syndrome have great potential when given the opportunity to succeed.
Myth: Individuals born with Down Syndrome do not experience full or productive lives.
Truth: Individuals with Down Syndrome live at home with their families, in group homes or in homes of their own. They are integrated into the regular education system and are active participants in the vocational, social and recreational activities of the community. Many individuals will go to college, work and lead meaningful lives.

 

image

We have high hopes for Oscar and we will help him achieve anything he sets his mind too. We’re realists in that we know the road ahead may be a bit of a bumpy one, but hey, who ever said they wanted to lead a boring, mundane life? Oscar has already taught me so much in his two years of life. I’ve said it before but I should never underestimate him, as he surprises me every day. I love seeing how family and friends of mine have changed THEIR preconceptions and how, knowing and loving a child with DS now has only enriched their lives more than they could have imagined. He truly touches people in a way I didn’t think possible.

image

So what are my hopes for World Down Syndrome Day 2105? To ask people to be a little bit more understanding, a little more accepting and like me back then, remember that life truly isn’t sad or rubbish, it’s just the beginning of an exciting new chapter for us.

Down Syndrome International invites everyone across the world to wear LOTS OF SOCKS on 21 March 2015 to raise awareness on World Down Syndrome Day (WDSD). If you do, it’d be amazing if you could spare just a £1 by texting SOCK57 £1 to 70070

Thank You x

image

 

IMG_1327

UK Blog Awards 2015 - Shortlisted Logo

World Down Syndrome Day 2015 – Don’t Be Sorry’s Video

Today marks the first day of Down Syndrome Awareness Week (16th – 22nd March) with World Down Syndrome Day 2015 #WDSD15 on Saturday 21st March
So I thought I’d do something I’ve never attempted before! I’ve put together a short video clip, all about my little boy Oscar and our journey so far. I remember quite vividly, the first few hours, days, weeks after Oscar was born and how I felt. Regrettably I thought my world had ended if I’m honest. I was wrong. So completely and utterly wrong. World Down Syndrome Day is all about raising positive awareness about DS and I hope this clip can have a little hand in that. I would absolutely love it if you could like and share the video on your on profiles/pages to do just that! #WDSD15 #raisingawareness #stevenspielbergiamnot #downsyndrome #dontbesorry

 

https://m.youtube.com/watch?v=esugTw_Lhbw

Comparison is the thief of joy

At the park this week, there stood a father with his son. The son can’t have been more than 5 years old and was asking his daddy if he could have a go on the roundabout. His dad’s reply: “You can have a go on the roundabout if you tell me what force is created for that roundabout to go round.”

I couldn’t quite believe my ears!  I mean come on, he’s barely 5 years old and you’re asking him questions like that. I’m not sure if it was for the child’s benefit. Perhaps it was… but my suspicions were that it was very much for the benefit of all those in ear shot as well.
image
I have a competitive streak. I can recognise that at times, to be competitive is a good thing. Like back in the day when I was auditioning, wanting to be the best was absolutely a good thing. When playing ‘Mr and Mrs’ with my family this Christmas, getting cross with Chris because he did not know my ‘ideal holiday destination’ or what ‘I wore on our first date’ is perhaps taking the whole competitive thing a little too far.
When Oscar was a baby, I used to compare him to his typical friends. Was he rolling over as quickly as them? When did they sit up compared to him? How many steps had he/they taken and at what age? The answer for the most part was that he’d taken longer than them and although it took me a little while to accept, I soon realised that it was irrelevant what they were doing and my focus should be only be on Oscar. I can honestly say now, I really don’t compare him to his typical peers. When I gave his friend Effie a lift to nursery the other day and we had a detailed conversation about what she’d done the day before, what she’d got for Christmas and who her best friends were, as Oscar sat there and listened unable to join in, I didn’t at all feel sad. When my niece Bella (who will be in the same school year as Oz) whizzed past him on her scooter the other day, I thought about the fact that Oscar had only just mastered using his feet to push himself along on his trike and I was fine. And even when his friend Ethan who, at two and a half, has taken to potty training like a duck to water, I don’t feel sad that Oscar’s lagging behind. I accept that Oscar will get there in his own time. Some things might take longer than others, but with every milestone that we wait with baited breath for, my boy will do it.
image
So why is it, that just recently I’ve noticed I’ve become bothered about how Oscar’s doing in comparison to his peers that have Down Syndrome. It’s frustrating me that I compare, for I know that it’s wrong, but for some reason it’s happening
I can only draw conclusion that it’s because when you have a child with Down Syndrome, every single developmental step is scrutinised. If Oscar manages to even attempt to move his mouth when doing his jolly phonic sound cards, he is met with a yelp of delight by his speech therapist. If he manages to pick out the blue card when asked, when faced with blue and red, well its the best news since sliced bread. Things just happen naturally with a typical child (I asked friends this morning if I should be teaching Alfie, Oscar’s little brother, any words and they said he’ll just pick it up… It’s baffling to me, when I’ve had to teach Ozzie every single step).
image
And what I’ve noticed most, is that I’ve become all the more aware of other parents of a child with DS around me and the way THEY act. Recently we’ve not only been to our local support group, we’ve gone to Speech and Language groups, therapy sessions, meetings, met up with new friends, all of whom have included children with DS and I’ve found it interesting listening to other parents address their children and hear what expectations they have of them.
image
Why is it that my heart sinks when I hear a mother ask their child, who is just a few months older than Oscar, to sign a three word sentence to ask for something? Oscar is only just signing one word at a time. Why is it, when a little girl, roughly the same age as Oz, walks in to the room and says “hello” do I feel sad that I haven’t heard Oscar say hello yet? Why is it when a therapist asks the group to do something, and Oscar sits there having lost interest, do I want to shout from the rooftops: “he can do this! I’ve seen it! I promise you, he totally knows what he’s doing!” For the record I never do, instead I sit there quietly and perhaps try to coerce him to join in gently… But then you get some mums who are literally shouting at their kids across the room to “do this, do that”, trying to prove to said therapist, along with everyone else in the room that their child is the winner! Is it an inbuilt thing that we’re all competitive? I kinda think it is but I do everything in my power to suppress this because I really really don’t want to be THAT mum!
image
Someone else once said to me that it’s very easy for us as parents to see our children as projects. We put every ounce of energy and enthusiasm into making them the best they can be, by teaching them their colours or religiously counting to 10 in front of them so one day they’ll magically pick it up, but actually, if you’re too busy working on them so much, you’ll miss the little person they are today.
She is wise, that lady! I must try to hold onto that.
image
Am I most bothered about the over enthusiastic parent who almost seems as though they’re trying to compete with everyone in the room by saying “look what MY child can do”, or is that I’m most bothered with myself for caring so much whether or not Oscar can do what they’re saying their child can. I’m really not sure. Probably a bit of both.
When people message me on my Facebook page and ask me when Oscar started walking for example, I always tell them the truth but am mindful not to leave it at that. I always say although he may have walked earlier for a child with DS, there are other areas he’s struggled or is struggling with. What I mean is, I am conscious not to worry the parent unnecessarily as all our kids progress at different rates.
image
And I guess that’s the point. All our children really do excel in different areas. Just because a child might be signing three word sentences or using a few more words in context than Oscar is, I mustn’t feel disheartened. I must stop seeing him as a project but most importantly I should take no notice of the odd parent that may be a bit over zealous in their approach to showing/proving what their child can do. I am certain their enthusiasm comes from a good place and they’re just willing their child to do well… But I should try not to listen. It’s not good for the soul.
Back in the day, children born with DS were labelled as either having mild, moderate or severe learning difficulties. In this day and age it is frowned upon and considered very un PC of us, to pinpoint our child somewhere on the spectrum. You either have DS or not, there is no mild or severe. It’s a question people often ask me about Oscar. “So, do you have any idea yet how he’s doing/development wise? I mean, has he only got mild Down Syndrome?” Yep, people actually ask this from time to time. I try to educate them politely and reiterate the above so they have a better understanding. But the more I go through life with Oscar and his peers it’s obvious to me that like any typical child or adult, there’s going to be varying abilities both intellectually and physically. I guess what I’m trying to say is that all children learn and develop at different rates, because for children with Down Syndrome the window in which they might first reach a milestone, is so much bigger than that of a typical developing child. With that in mind, as parents we do have a harder task in hand. We want our child to succeed as early as possible in those windows. We must be mindful however that every child will develop at their very own rate and the next time we want to shout from the rooftops that our own child can do this or has mastered that, we must remember that their are other parents there, willing and wishing their child to succeed just as much as we once had.
image
And Oscar? So he might not be signing sentences yet and he might only just be getting the odd word here and there. He IS however, picking up different signs all the time, he understands so much more than ever before and his communication and vocalisation is really coming on.
image
And as for me? Well, I just need to remember the title of this piece today…. “Comparison is the thief of joy”… it’s as simple as that.
image
IMG_1327
UK Blog Awards 2015 - Shortlisted Logo

Happy New Year – We won and turned one!

As 2014 draws to a close, and the coffee creams are the only lonely chocolates left at the bottom of the Roses tin, it’s time to reflect on the year past. It’s lovely to look back to see how far Oscar has come but not only that, next week it will be a year since I first published my blog online. “Don’t be sorry” will be 1 next week!

When I think back to this time last year, I had just had Alfie (my second son). How I managed to start writing this thing with a tiny baby I’m not sure… I’m not kidding when I say I seem to remember I was in a sort of daze, wandering around trying to find my feet. I’m not great with newborns and find it hard, so last Christmas kind of just passed me by in a cloud of expressing and sleepless nights!

Oscar through the year!

Oscar through the year!

What I do remember (and seems all the more poignant as I look back) is that, as the whole family sat around on Christmas Day, our attention was turned to Oscar. He’d just learnt to stand alone. He’d been pulling himself up a while but this time, there were no tables to prop himself up on, no sofas to cling on to… Just him, standing there, all by his little self! I remember us all watching him with bated breath. Could he really manage it on his own? His hands in the air, his own breath held, he’d look for our reaction, and once he’d realised what he’d done, he’d smile, the biggest smile on his face and then he’d clap himself! His performance of course lead to our obligatory applause and yelps of delight. The whole family couldn’t have been prouder. I think back and can appreciate all the more now, that every milestone Oscar achieves honestly means so very much.

Look no hands!!!!

Look no hands!!!!

So looking back on 2014…

January was where all this began. The beginning of “Don’t Be Sorry”. What started out as way for me to document what was going on in Oscar’s life, a diary of sorts, I realised very quickly that by writing things down, it was helping me. I had actually started jotting things down when Oscar was a lot younger and it was a relief for me to pour my heart out onto the page. I could rationalise things that way. I posted my first ever blog on my personal Facebook profile, thinking that a few friends might have a read… Only to be blown away by the response it received. It was the comments and encouragement of those friends and family that persuaded me to keep writing and then to eventually publish it and create an FB page, Twitter account and this year, launch my own website. The blog has gone on to help others in a similar position, to help family and friends understand the challenges we have had to face, but also I’ve found that people, whether they have children or not, are simply enjoying reading about Oscar. It’s more than I could ever have hoped for. Crazy!

1st ever blog post

1st ever blog post

In February Oscar started walking! It was a major milestone for us. I remember vividly being in his paediatricians office when he was just 5 weeks old and her telling us that he appeared to have “very low muscle tone” and that he’d need regular physiotherapy. Within weeks he’d started his therapy. She helped at first with tummy time, side lying, prop sitting, sitting up independently, crawling (although Oscar didn’t crawl he was a bottom shuffler), pulling himself up to stand, standing alone to finally walking. At just 19 months, a lot earlier than we’d expected, Oscar walked. I cried. The happiest of tears. My boy had defied the odds and done it. That for me was a big step in me coming to the realisation that even if people said Oscar wouldn’t be able to do something, he and I were as sure as anything going to try to prove them wrong! It might take a little longer than the average Jo… But you know what, we’re ok with that!

Taking steps...

Taking steps…

March marked Down Syndrome Awareness Week and we donned our “odd socks” and I posed this photo of Oz. To my amazement it went on to get in excess of 2 thousand likes and our page a whole bunch of new followers. My little superstar!

"Am i rocking this extra chromosome or what?"

“Am i rocking this extra chromosome or what?”

The Roberts' do "Odd Socks"

The Roberts’ do “Odd Socks”

In April we made the 13 hour drive to Switzerland for a family holiday. I learnt a lot of things that trip… But mainly that 13 hours in a car with a 21 month old and a 4 month old baby was literally the most ridiculous decision Chris and I had EVER made. We had a good time, but I can say with more certainty than I’ve ever said before, we will be flying next time!

Oscar in the Alps

Oscar in the Alps

May saw Oscar’s 1st Heart Day! A year since his open heart surgery and VSD closure at The Royal Brompton Hospital. A year on and a time to reflect on that life changing day. We were told the night before his surgery, that in the few short weeks since they had told us he needed surgery, the hole in his heart had got significantly bigger. If they hadn’t had operated on him, he may not have made it to his 2nd birthday. A roller coaster of emotion started that day. Nothing can prepare you for something like that. Mostly we felt scared. Scared that we might lose the baby that over the past 10 months we had fallen in love with. Until the point we had to leave him in that operating theatre, we hadn’t really known what love was or indeed how much we loved our baby with every inch of our bodies. That hospital gave him life again and for that, we will be forever grateful.

One year on... Forever grateful xxx

One year on… Forever grateful xxx

Back in June I wrote a blog that probably had the biggest reaction I’ve ever had on a post. It was called “Sometimes the smallest things take up the biggest room in your heart”. I talked of how I wished I’d had a crystal ball the night Oscar was born, so I could see into the future and see, that although different to the way I planned it, life now is pretty amazing and I really didn’t need to be quite so upset. I talked of how I felt then and how I feel now,  which was just so completely different. The responses I had were heart-warming. Mothers and fathers of children with DS who said that they had felt some of the same emotions but hadn’t faced them and my words had hit home. Complete strangers, telling me that they were pregnant and that IF their baby was to be born with DS, now that they’d heard my story and seen Oscar, they wouldn’t be nearly so scared. Words of encouragement, support and understanding. But my favourite response of them all, was from NEW mums. Ones that perhaps like us, didn’t know about their babies diagnosis and who had found out at birth. Still grieving for the baby they thought they wanted, angry with the world, sad, sinking lower and lower but mixed with an overwhelming love for their new baby. Those responses. The ones where they tell me that in reading my blog they can see that they’re not alone and that someone else gets exactly how they’re feeling. They’re the ones that touch my heart and remind me again why I continue to write.

My boy x

My boy x

In July Oscar turned 2. A party with family and friends, a cake, a trampoline, singing, presents… Happy faces everywhere! Perfect.

Birthday fun

Birthday fun

The month of August was all about Oscar’s transition into mainstream nursery. I had spent weeks visiting various nurseries in the area, mindful that I needed it to be the right one for him. When we arrived at his now nursery, I knew it was right. They embraced Oscar, they included Oscar… they have been amazing with Oscar. When any mother leaves their child in the care of someone else it is always daunting but knowing that Oscar has additional needs that others may not fully understand, I had my reservations. I needn’t have worried, as he’s flying there. I truly believe his development has come on leaps and bounds over the last few months because he has had the opportunity to thrive there. His key worker has learnt and his continuing to learn makaton. His understanding and signing is really taking off. The nursery are well aware of his targets he has had set by portage, OT and speech and do what they can to assist him in these too. In all the times I have picked him up, I always try to watch him for a while before he sees me and he always has the biggest smile on his face. He’s genuinely happy there. What more could I ask? I mean, don’t get me wrong, this week I arrived and he had a different pair of trousers on, no shoes and someone else’s socks. The staff had been washing aprons after a painting activity and apparently Oscar had decided to sit in the washing up bowl fully clothed. So yes, it’s still a work in progress but little steps :0)

Oscar starts mainstream nursery

Oscar starts mainstream nursery

In September I received a MAD Blog Award for Best New Blog 2014. To say I was shocked would be an understatement. I think I just about held it together to blurb something out in my acceptance speech but I am just so thankful to all those readers that took the time to vote for me. The awards have not only opened a few more doors, it has also been so lovely to connect with other bloggers and an online community that now provide me with support and friendship. Never underestimate the power of social media.

2014 MAD Blog Awards

2014 MAD Blog Awards

October we dressed as an alien, a pumpkin and a spider for Halloween. I even made some pretty scary looking Oreo spiders. hashtagPROUD!

Halloween!!!!!

Halloween!!!!!

I’ve looked back at my blog posts in November, the last time I wrote and smiled. I talk of how Oscar has taken to pushing Alfie and am trying to figure out how best to deal with it. I’m smiling because so many of you were right. It WAS a phase. 6 weeks on and he’s not pushing anymore. Sure he’s still a little monkey at times but now Oscar and Alfie work together as a team. There’s no more pushing as Oscar has realised he’s met his match in his little brother. Don’t get me wrong, there’s still rough and tumble (they’re boys… that’s what boys do, right?) but they laugh together, and they laugh a lot. I love that they’re friends. And I know that in time, Alfie is likely to steam ahead in development, but for now I’m enjoying them just as they are.

Double Trouble

Double Trouble

On reflection, I look back on 2014 with fondness. In contrast to last Christmas, where he’d just started to stand, Oscar is now running around the place. A ball of energy that hurriedly rushes everywhere. Engaging, mischievous, determined and always looking for the next adventure. As I reread posts written throughout the year, I remember just how I was feeling back then. I’m relieved that those worries I had about Oscar have passed now. Happy that every month he achieves more and more. I’m delighted that the blog is still going strong and that people are seemingly still wanting to read about my little boy. I hope I’ve stayed true to my word and show the real us, warts and all. I’ve always said, life is good, but at times, I guess like anyone else, it can suck. Sure there are still worries… It’s just that I’ve come to discover that as soon as you overcome one fear about your child, another one crops up. That’s called being a parent, regardless of whether you have a child with additional needs or not right?

Christmas last year... Just before I started writing

Christmas last year… Just before I started writing

As we head into 2015 however, we have a stream of appointments with medical professionals ahead of us. Cardiologists, ENT consultants, Thyroid consultants, Speech Therapists to assess his swallow/reflux, hearing tests, blood tests, goodness knows what else. And while it would be easy to sit here feeling sorry for myself that this wasn’t the life I signed up for, I don’t. I feel thankful. Thankful that (touch wood) Oscar appears to be doing well. Thankful that he was born into a time where there is all this medical intervention and therapies to make him the little boy today. Thankful that every day, along with his brother, he brings so much joy and happiness into our lives. But mostly I’m thankful that I have been lucky enough to have Oscar in our lives. He has taught me more about myself, about life, about the value of family, friends, support and LOVE than I ever thought possible. So Thank You 2014… and 2015? Bring it on.

image

image

Happy New Year x

IMG_1327

Having a 2 year old is like using a blender without a lid

Today started off pretty badly. The Roberts’, (that’s us by the way) had a 4.45am start. For the past week or so the boys have been getting over nasty colds, which at night has left them coughing. I swear, as soon as you tell someone that your baby’s sleeping through the night, 9 times out of 10 something goes wrong. Lesson learnt. Never be a “smug mum” because it will come back and haunt you when you’re next getting up at the butt crack of dawn!

Hhhhmmmm Like butter wouldn't melt!!!!

Hhhhmmmm Like butter wouldn’t melt!!!!

My children have never been ones to “lie in” though. Typically they can be awake from anywhere between 5.30-6.30am. Nothing can prepare you for the early wakings kids bring you. I think I underestimated how knackered I’d actually feel after such little sleep. So today, when I was woken at 4.45am and spent the best part of the next hour trying to resettle both Oscar and Alfie intermittently, the day didn’t start off too well. Around 5.45am I gave up and took them downstairs, not before (I’ll admit this may have been a little childish) stomping around our bedroom for Chris to hear me, huffing and puffing, “For god’s sake. 4.45am… I’ve been up since FOUR FORTYFIVE.”

Chris – breathing heavily, either pretending to have heard nothing OR actually asleep. Either way, both in my eyes, equally irritating.

The 4.45am start did indeed set the precedence for the whole day. A catalogue of events that I won’t bore you with, but the overview is that it involved 2 toddlers, a kitchen cupboard, various pots of spices, virgin olive oil, vinegar, 2 toddlers fully clothed covered head to toe in said spices, oil and vinegar… Spices in the eye, crying, spices in the mouth, MORE crying… And a beaker full of water to wash it down.

I’d left them for moments. I mean literally a few minutes. Lesson number 2 learnt. Never be one of those “smug mums” that says… “I’m just going to teach my children NOT to go into kitchen cupboards so there’s no need to put child safety locks on them”. NEVER be that “smug mum” again because you’ll find yourself hot footing it to the nearest Robert Dyas to do just that!

image

So yeah, trying to scoop the boys up off the floor, whilst trying myself not to slip on the oily gloopy mess, wasn’t my finest hour as a parent. The rest of the day involved two hyperactive (tired) children, a mummy who didn’t have the energy to calm them down,  disturbed nap times due to builders next door, Oscar’s portage session enjoyed immensely by Oscar but with Alfie trying desperately to partake in each and every toy the therapist brought out (cue tears and tantrums from Alfie, as to why he couldn’t possibly join in too). It will conclude, with me going to bed far too late again I’m sure, resulting in another early start and me cursing myself for watching “I’m a celebrity” (I know, dreadful tv choice) all the way through, when I could have been catching some extra Zzzzzz. I will never learn.

Anyway, my point this week was totally about a little phase Oscar’s been going through. You may wonder why I mention the events of today but when you read about this phase, you may realise why none of the above helped. I say a phase as I’m praying it’s just that but it’s, at times, becoming a bit of a habit.

Who me?

Who me?

You see Alfie has started walking. He’s been walking for about a month now and since then, I’ve noticed a big change in Oscar. Suddenly he seems to be taking a lot more notice of his little brother. Before, in his eyes, Alfie was pretty boring. He just used to sit there or crawl around. Now that he’s almost eye level, well, he’s a lot more intriguing, isn’t he? I think in Oscar’s mind, he now sees Alfie as a walking target. I liken Oscar and Alfie to a cat and mouse. Scurrying around everywhere, busy doing what they do, but every once in a while, when Oscar sees his target, he pounces. And by pounces, I mean pushes him to the floor. He’ll walk up to him, place the palm of his hand, square in the middle of Alfie’s forehead and bam, he’s down. It’s been going on now off and on for a month. It would be funny, if it wasn’t a regular thing but today in particular, Oscar hasn’t stopped. If Alfie cries when he does it, Oz thinks it’s hilarious. And he’s worked out that although Alfie’s walking, he’s not the sturdiest on his feet yet and if you push him, he wobbles and that’s funny too. He went through a bit of this sort of thing when Alfie first sat up. He’d push him over then. Falling from waist height and on carpet wasn’t so bad. Being pushed over from standing may be grating on Alfie just a little.

"Mummy, Seriously?"

“Mummy, Seriously?”

So I’m struggling. I obviously need him to stop but whatever approach I take, it doesn’t seem to be having the desired effect. I tell him and sign “no” and he ignores me. I tell him and sign “stop” and he just gives me a high 5. I’ve tried ignoring him and turning all my attention to Alfie, I’ve tried telling him and signing that he makes me “sad” when he pushes Alfie over and he just looks at me perplexed. I’ve tried taking away his favourite toys and although he might cry for a minute or so, he quickly forgets, busies himself with something else, until he spots Alfie again and makes a beeline for his little friend, the mouse. I have told him time and time again to use “gentle hands” and this works for a while, but then 10 minutes later he’s forgotten.

image

I know he knows I’m cross, as he cries. I also know he fully understands he’s not meant to do it and am pretty sure it’s for a reaction… Or to get my attention.

So here’s the thing. How do I handle this? I know the above might sound like I’m not being consistent in my parenting methods but I’ve tried a lot of these theories out over time and still don’t seem to be working. I make him sign “sorry” but as yet it’s just hand over hand as he doesn’t seem to want to offer it without my prompting. I would try the naughty step but I’m not altogether convinced he would understand the concept yet. Maybe he would.

image

What I do know is that the pushing is not out of malice. It appears to be a game. I can tell the difference between a push because it’s funny to Oscar, to a push because he wants to sit where someone else is sitting or play with the toy kitchen that someone else is playing with. When this all started a few weeks ago I was worried Oscar would push other children over. I’d notice at our local playgroup for example or when we were out at friends houses, that he’d be doing it. I realised quite quickly it was never his peers though, it was always younger children. I’m guessing with children his own age or height he didn’t feel the need to do it.

He may LOOK like an angel :0)

He may LOOK like an angel :0)

I think it’s easy for parents of a child with DS to make excuses. I really don’t want to be that person. While I know it’s going to take Oscar that little bit longer to grasp certain concepts, I also think I’d be doing him a disservice to say that he can’t understand. He can. It’s just finding ways to get my point across. Over the last month I’ve spoken to both professionals and other mummies. The general consensus is that he’s a 2.5 (almost) year old little boy and regardless of the DS, that’s the sort of things little boys do. I guess I could sit here and speculate about why he’s doing it. Frustrations in communication? Jealously? Attention? Who knows? It’s a phase and it’ll pass… And if it doesn’t, in a few months Alfie will be stronger and Oscar will have met his match.

To me this parenting malarkey is a work in progress. I’ll figure it out one day. In the meantime if anyone has any advice on how to deal with a nearly 2.5 year old, then feel free to share.

image

* Please note I’m asking for advice here, this doesn’t come under the unwanted advice that I blogged about a few months ago ;0)

IMG_1327<center><a href=”http://www.letstalkmommy.com/” “><img border=”0″ src=”http://www.letstalkmommy.com/wp-content/uploads/2014/02/ShareWithMePicM.jpg” /></a></center>